The CHD Blog

Depression, Anxiety, & PTSD: Identifying the Need for Intervention

2012-01-12T06:01:00.000-08:00

The mental health disorders known as depression, anxiety, and post-traumatic stress disorder (PTSD) affect approximately 1 in 10 people each year. Collectively, these conditions produce a multitude of symptoms such as feelings of hopelessness, sadness, guilt, pessimism, fatigue, loss of appetite, and even thoughts of suicide. So it stands to reason that this particular issue is extremely serious when considering most families who have experienced a congenital heart defect could possibly suffer from one of these mental health disorders. And it’s no wonder so many people who deal with a CHD (either their own or a family member’s) on a daily basis may end up suffering from these mental health conditions: they must deal with the emotional stress of the CHD diagnosis, the treatments, the medical procedures, surgeries, and the constant worry about the life-long health of themselves (or their family member).
That being said, it becomes urgently important to be watchful of the family members who deal with a CHD. Be on the lookout for signs that someone may be suffering from one of the above-mentioned mental health conditions. For example, if you notice someone is avoiding others, seems chronically sad or always tired, expresses feelings of extreme guilt, worry, or if they seem overwhelmed or have ever mentioned harming themselves, then you know it’s time to intervene.

When you do suspect someone is indeed suffering from depression, anxiety, or PTSD, here are some suggested things you can do:

Do a little research (it never hurts to have plenty of information and resources if you plan on having any sort of intervention for someone who you feel is suffering)

Sit down with the person and talk (ask them how they feel, what they’re thinking, let them know you and others are worried about them, share the researched information you found)

Most importantly, encourage the person to seek help from a mental health professional (you can even offer to accompany them)

Let them know you are there for them (encourage daily phone calls or visits, offer to help them with daily chores, etc.)

Some resources that may be of help:
http://www.cdc.gov/Features/Depression/
http://www.mayoclinic.com/health/depression/DS00175
http://www.nimh.nih.gov/statistics/index.shtml
http://www.webmd.com/anxiety-panic/guide/post-traumatic-stress-disorder
http://mayoresearch.mayo.edu/mayo/research/whiteside_lab/publications.cfm
http://www.mayoclinic.com/health/teen-depression/DS01188

Preparing your Child’s School for His or Her Special Needs

2011-12-21T08:25:00.001-08:00

Although the school year has already begun, it’s never too late (or early) to think about what your child’s school needs to know regarding his or her special CHD situation. And any time is a good time to consider what information you should provide to your child’s school so they can better care for and support your child.

For starters, it’s always a good first step to schedule a face-to-face meeting with important school faculty members (nurse, principal, counselor, classroom teacher, etc.). This will help all individuals be able to put a face with a name and to get to know your personalities, expectations, and concerns in a personal yet professional setting. Printing off some general information/facts about your child’s specific CHD to take to this meeting is always advised. Copies should be given to at least the nurse and classroom teacher. If your child’s condition is severe enough that it will require a special needs counselor, then of course the counselor will benefit from the information sheet as well. During your discussion you should inform all pertinent faculty members of several issues. One issue being your child’s possible learning/developmental problems. Since some children with CHDs can develop learning delays or problems, let the teacher know you’d like to be made aware of any signs of concerns the teacher may have during the school year. That way you can address the concern with your child’s doctor and get his or her recommendations. Another issue to discuss deals with your child’s general health; since children with CHDs can be at a higher risk of contracting certain infections, ask the teacher to notify you if other children are sick. Also regarding general health, the teacher (especially the physical education teacher) should be made aware that your child may require more rest or may be prone to tiring more easily. There’s also the important issue of the medical care that your child may need throughout the day (medications, procedures, etc.); in these cases, the nurse and teacher should obviously be well informed about the specifics – your child’s doctor would undoubtedly supply you with information/handouts explaining your child’s medical needs that could be given to the nurse. An important (if not the most important) issue that most parents want to impress upon their child’s school is that their child is a regular kid…they should be treated as such. It’s important to let your child’s school know your desire to have your child feel “normal” and included like every other child.

Overall, it’s important to remember that while some children’s CHDs are relatively simple and may not require any special care at school, other children may need regular intervention and attention from school faculty members. So, it’s imperative that parents evaluate (especially with their child’s doctor) what exactly the school needs to know.

Choosing a Pediatric Cardiologist

2011-12-07T06:14:00.000-08:00

It’s one of the most (if not THE most) important decisions you will make for your child once he or she is diagnosed with a CHD…choosing a pediatric cardiologist. When a diagnosis is made, parents go through so many emotional challenges that this overwhelming task can seem daunting or even impossible. But giving serious thought to who will give your child medical care is so important, and so many parents struggle with exactly what to look for when making their pediatric cardiologist selection for their child. After researching the medical community opinions and receiving parental input, we’ve compiled a list of some of the most important factors to consider when making that choice.

1. Referrals: At first, many parents are referred to a pediatric cardiologist by their child’s pediatrician (or a hospital pediatrician if the CHD is discovered at birth). But don’t feel you have to use the particular doctor who is referred to you. It’s your prerogative and right to be able to search and find the cardiologist that suits your family’s needs.

2. Insurance coverage: Although we hate to have to factor this into our decision-making process, unfortunately for many families, treating CHDs can be a long and costly journey, so knowing that your insurance will be accepted by the doctor/hospital you choose is definitely something to consider.

3. Location: In some cases, families claim they are willing to travel anywhere to seek medical treatment for their child. However, if it’s simply not a possibility for you (ex: work responsibilities, costly travel expenses, frequency of your child’s doctor visits, etc.), then definitely consider the proximity of the doctor’s office/hospital to your home.

4. Basic credentials: This is obviously one of the most important factors. What kind of education and training did the doctor receive? Is the doctor board certified in pediatric cardiology? What types of procedures do they have experience with?

5. Experience with specific CHD: For many, it’s simply not enough to know that a potential doctor has treated patients with CHDs. They want to be assured that the potential doctor has treated patients with their child’s specific type of CHD.

6. Doctor – Family Relationship: After having a consultation with this doctor, does he/she seem to be willing to work with your family and not just the patient (in other words, are they interested in educating and keeping you all informed or are they merely interested in treating the CHD)? Also, do you get along with this doctor (this may seem insignificant, but for many parents finding doctors whose personalities are compatible with their own makes their treatment journey that much easier)? Having said that, this may be one area that most parents would sacrifice if the doctor is exceptionally talented in their medical field of practice.

Even though this can be quite a stressful time, knowing what to look for when it comes to choosing your child’s medical caregiver can provide some much needed peace of mind.

Caring for and Empowering your Child

2011-11-16T11:47:00.001-08:00

Ultimately, no one knows how to better care for your child than you do. As a parent, you have instincts, passion, and most of all love – all these things mean that you are perfectly capable of giving your child the best care possible. However, when you learn that your child has been diagnosed with a CHD, most parents can’t help but wonder, “How do I care for my child?” We all second-guess our parenting abilities from time to time, but when you have a child with extra needs, we may find ourselves second-guessing our actions even more. Here are some specific things that parents of children with a CHD should consider when providing care for their children.

Although many of the day-to-day tasks such as special feedings, looking out for signs of problems or complications, or administering medicines actually become like second nature and relatively “easy” over time, other issues within the realm of caring for our children are what cause us to doubt ourselves. One of these issues involves how to treat our children when it comes to addressing their illness. Whether your child is diagnosed with a CHD in infancy or later in childhood, you’ll have to explain to him or her things such as why they have a surgical scar, why they need to visit the doctor/hospital more frequently than some other children, why they must take medication every day, etc. Many parents think they can’t handle or shouldn’t address these issues; however, it is by addressing these issues and having these types of discussions with your child that makes your care for them even that much better.

Besides communicating with and educating your child, the main advice that numerous child psychologists and doctors will give regarding this issue is to encourage your child to become involved in their own care (when/if they are emotionally and physically able of course). This makes children feel much more confident and in control – children will most likely think, “Wow, if Mommy and Daddy trust me to take care of myself I must be doing great!” It’s a great tool to empower your child and yourself. Depending on the level of care your child requires, the doctor or other members of the medical team can give you specific instructions regarding how to incorporate your child in the caretaking process. And at the end of the day, involving your child in their own caregiving is the best way you as their parent can care for them as well.

Keeping the Balance amongst Siblings

2011-10-28T09:00:00.000-07:00

It’s one of those challenges that all families affected by a Congenital Heart Defects (CHD) face…how to keep the balance amongst siblings. There are so many issues that come into play when considering how to treat your children who are not afflicted with a CHD. There’s a fine line – you don’t want to burden them with too many responsibilities or make them feel less important, yet you also don’t want to spoil them to overcompensate for the fact that so much attention is paid to their ill sibling. How do you handle it? Where do you turn for advice? We’ve compiled some tips and advice that was gathered from other parents, online resources, as well as publications by child psychologists.

· While it is very important that all siblings be informed about your family’s specific CHD situation, it’s important to set an example that it’s not something we have to dwell on every day. All children want to live as normal a life as possible. So, by educating your children about CHD rather than making it a daily focus, you’ll be off to a great start in establishing a balance amongst your children and your entire family as well.

· Allow your children who do not have a CHD to choose a specific responsibility in order to empower them. This will let them know that you value their help yet you won’t be burdening them with too many expectations. For example, maybe a sibling can simply be a reading buddy for your child with a CHD.

· Remember to let all your children know how much you appreciate their help. If they happen to be too young to actually be of any significant help at the moment, you can always tell them how much you appreciate their understanding and patience when you have to assist or focus on their sibling who is sick.

· Although it can be tempting for many parents, avoid spoiling your other children in an effort to make up for the attention you feel you’re giving your child with a CHD. Spoiling them can include giving an abundance of material items, too much attention, or even treating them with kid gloves as though they’re too fragile to handle your family’s situation. They will grow up with a sense of entitlement or even resentment. Kids are smart – they will eventually realize why you’re spoiling them and will in many cases feel like they didn’t truly earn the things you gave them or the over-attentiveness you showed them.

· Encourage your children to express their feelings. Talking can be such a powerful tool when it comes to children. It doesn’t matter their age – you can always adjust your conversations by using developmentally appropriate language to answer their questions or respond to their statements. Be truthful yet simple and to the point with your children. One story we came across involved an older sibling who asked why his little brother was sick; he thought he did something wrong. In this situation, it was suggested that the parents have a real conversation with explanations that were simple and truthful. For example, you might say “You didn’t do anything wrong; your brother just has a special heart. We’re all special in our own ways.” Sometimes, it may seem impossible to discuss CHD related topics with your children; however, it’s much wiser to at least let them know you heard them and are willing to try a discussion rather than simply changing the subject.

At the end of each day, this whole issue does tend to feel like quite the balancing act. However, it is so important to make a conscious effort to remember to think about how you’re treating all your children. Do they feel equally important? Is one child feeling neglected or perhaps, on the other hand, that you’re actually being over-attentive to him/her? These are questions we can stop and ask ourselves each day to try to keep that balance and ensure that our children sense that balance amongst their sibling relationships.

It's almost CHD Awareness Month!

2010-01-30T17:32:00.000-08:00

What are you doing to spread the word about CHD, its warning signs, its long term effects and the little known facts about its frequency? We'd love to hear!

Traci Lisa's daughter, Cassidy, was born with Tetralogy of Fallot w/ Pulmonary Atresia. This heart mom is spreading the word about CHD through her talent... making awareness jewelry. Check it out!

Share your efforts with us and spread the word. February is National CHD month. What can you do to save a life?!

Health care system holds heart patients hostage

2009-10-01T06:52:00.000-07:00

Check out ABC News' Hostages Dying for Healthcare Reform article... it sounds just like my family, does it sound like yours?

Some takeaways from the article:

Many of us are captive to our big company insurance plans - no other companies will take us, and if we lapse in our policies, we're out of luck due to pre-existing conditions.
In 2005, 60% of all bankruptcies were related to medical expenses. Wonder what it is now that the recession is in full swing...
Heart conditions account for $123 billion in health expenses a year.

We may not agree within our community of heart warriors what the best solution is for health care reform, but we have all, likely, lived first-hand the need for change. Take a moment to write your congressional representative and share your story with them.

Treatments Hard to Come By...

2009-08-11T20:46:00.001-07:00

Take a peak at this entry on the Wall Street Journal blog... it doesn't come as a surprise to patients and families of CHD patients, but it's news all the same:

There is not enough research into CHDs.

What's wrong, however, is the statement that this problem is too small for companies to invest research in. With 1 in 120 (approximately) kids born with heart defects, and a large percentage of those kids needing intervention, you can bet it's big enough to pay attention to.

The article does highlight, though, that there is hope in terms of new research. According to WSJ, the NIH is studying treatments in children with certain heart conditions and the American College of Cardiology is launching a catheter registry that aims to help inform doctors who treat kids. And at least one heart device for kids appears to be on the way: Medtronic’s experimental heart valve for both children and adults who had heart defects at birth.

Baby steps, but we can get there!

Never Give Up

2009-07-14T09:20:00.000-07:00

An article published by Associated Press today left me dumbfounded. It reminded me to never, ever give up hope. You've GOT to read this article in its entirety (see summary below). See if you feel the same...

British girl's heart heals itself after transplant

Excerpted from Maria Cheng, Ap Medical Writer – Tue Jul 14, 12:40 am ET

In 1994, when Hannah Clark was eight months old, she developed severe heart failure and doctors put her on a waiting list to get a new heart. But Clark's heart difficulties caused problems with her lungs as well. To avoid a risky heart/lung transplant, doctors took a chance at a new and novel idea.

Sir Magdi Yacoub of Imperial College London thought that said that if Clark's heart was given a time-out, it might be able to recover on its own. So in 1995, Yacoub and others grafted a donor heart from a 5-month-old directly onto Clark's own heart. After four and a half years, both hearts were working fine, so Yacoub and colleagues decided not to take out the extra heart.

However, the powerful anti-rejection drugs Clark was taking caused cancer, which led to chemotherapy. Even when doctors lowered the doses of drugs to suppress Clark's immune system, the cancer spread, and Clark's body eventually rejected the donor heart.

In February 2006, doctors removed Clark's donor heart. Luckily, by that time, Clark's own heart seemed to have fully recovered. Since then, Clark — now 16 years old — has started playing sports, gotten a part-time job, and plans to go back to school in September.

At the moment, doctors aren't sure how that regeneration happens. Some think there are a small number of stem cells in the heart, which may somehow be triggered in crisis situations to heal damaged tissue.

Granted, Hannah's case is a rare and miraculous one, but it does give us a window of hope for the future!

Side note - even if this were to become an option for treatment in the future, there is a serious shortage of donor organs available for such transplants. Consider becoming an organ donor today, and asking your loved ones to do the same!

Great News: Scientists ID'd Heart Stem Cells!

2009-07-03T08:18:00.000-07:00

Source: Constance Holden, ScienceNOW Daily News
2 July 2009

I was thrilled to read today that scientists have finally identified the cardiac stem cells that create all of the major cell types in the human heart. In recent years, scientists identified these cells in embryotic mice, but now a team at the Massachusetts General Hospital in Boston have found these same cells (that express the protein Islet 1) in humans. The team reports its work in Nature.

What does this mean? That researchers are one step closer to creating new cardiac stem cells in the heart's major cell types: heart muscle (cardiomyocytes), smooth muscle, and blood vessel lining (endothelium).

Chien, the researcher who made this astounding discovery, cautions that these primordial stem cells could not be used for therapy because they could develop into undesired cell types, but they could be used for disease modeling and drug screening and - most importantly to those of us affected by CHD - further research on congenital heart malformations. Chien speculates that CHD's "may be a stem cell disease" because Islet 1 cells are clustered in areas that are "hot spots" for heart defects.

The future I hope it holds for us? The possibility of growing human "heart parts" (such as strips of muscle or a valve) to assist CHD survivors.

Physical Restriction after Fontan: How do You Know?

2009-06-23T07:19:00.000-07:00

A recent article in the American Heart Journal from researchers at the Hospital for Sick Children in Toronto questions the use of physical activity restrictions for children after undergoing the Fontan operation. In the abstract online, the researchers studied how the information regarding restrictions are conveyed from the cardiologist, parent and in the medical charts - often these three sources disagree. Regardless of the cardiologist reported restrictions, 70% of parents reported that their child's activity was restricted. Parents and cardiologists report the same body contact restrictions, but differ for exertion and competition restrictions. Medical charts reflect competitive sport, but not body contact or exertion restrictions. So, what to do if you're a parent?

This study suggests that parents are left with uncertainty about physical activity, and rightly so, given the significant variance in the sources of information they receive.Primary care doctors are often not included in the loop (medical records don't reflect the restrictions for exertion and body contact).

Cardiologists need to work to ensure that activity restrictions are accurately conveyed, which will enable parents and primary care providers to confidently encourage the active lifestyles. And parents, talk to your cardiologists - don't take the advice of the primary doctor (though he or she may be correct). While your primary care physician is likely a wonderful, well rounded person, the specialist is better able to answer the questions specific to your child's condition.

Charities Recognized for CHD Efforts

2009-04-28T19:10:00.000-07:00

This past month, two outstanding CHD-related charities were selected by IntelliClear as its 2008 Clarity Trust recipients. Congratulations to Its My Heart and HeartGift Foundation!

As the Congenital Heart Futures Act is being introduced to both houses of the United States Congress this spring, IntelliClear recognizes this year the outstanding efforts of It's My Heart and HeartGift as leading the charge on children's CHD.

"According to the American Association of Thoracic Surgery, an astonishing 93% of the world's population has no access to cardiac surgery. With the assistance of generous corporate citizens like IntelliClear -- by combining our resources, our skills and our compassion -- HeartGift's all volunteer team of pediatric physicians will continue to save the lives of children born with CHD," says Lisa Rodman, Executive Director of The
HeartGift Foundation.

"Since CHD is America's #1 birth defect, it is vital that we bring awareness to the nation via community outreach, hospital programs and other support services that bring families and resources together. It's My Heart, Inc. relies heavily on the compassion of corporations like IntelliClear Inc., allowing us to further our advocacy and awareness programs for those affected by CHD," says Corrie Stassen, Executive Director of It's My Heart, Inc.

If you haven't taken a chance to check out these two fantastic charities, take a look today!

Mapping the Heart: Cross-functional Research Leads to Breakthrough

2009-04-10T22:38:00.000-07:00

Source: http://www.bjhcim.co.uk/news/2009/n904026.htm

Imagine if imaging of the earth's inner core could lead through to a breakthrough in cardiology... and you will get an idea of what is happening at Bournemouth University.

A computer modeling program was created by Professor Nick Petford to study how liquid metal flows through cracks during planet formation. “For a long time people thought the flow of liquid iron along the edge of grains and through narrow channels and cracks was not possible. NERC funding allowed me to develop a technique for importing object images of rock slices into a software package and then run a fluid-flow computer simulation to look at how liquid metal inside a meteorite moves around under pressure.” Then he realized that the software could be used to do so much more...

Working with a heart radiographer at the Royal Bournemouth Hospital, he used the same simulation technology to look at the blood flow in a diseased human heart. They used data from an actual MRI scan, adjusted the viscosity and density of the fluid to reflect that of human blood, then solved the equations to discover where a blockage existed.

The MRI had not shown an obvious blockage, but utilizing the software, they predicted, exactly, where a clot was located. Just imagine the implications for future studies in this area and earlier diagnoses for patients!

A detailed article regarding this research can be found at: www.nerc.ac.uk/planetearth.

Congenital Heart Futures Act - Now a Reality!

2009-03-18T08:14:00.000-07:00

Late yesterday the Congenital Heart Futures Act (Bill S. 621 in the Senate and HR 1570 in the House) was introduced to Congress! In the Senate, Senator Dick Durbin of Illinois led the charge joined by Senator Thad Cochran of Mississippi. In the House, the bill's lead co-sponsors were Representative Zach Space of Ohio and Representative Gus Bilirakis of Florida. We are thrilled that this groundbreaking piece of legislation has already received bipartisan support.

So what's next? Like any piece of legislation, the Congenital Heart Futures Act has to get majority support in both the House and Senate in order to be passed. Please email your Senators and Congressman today to ask them to become a co-sponsor of this legislation. It just takes a minute - here's how you do it:

Go to http://www.senate.gov and http://www.house.gov to look up your representatives and their email address.
Draft your email - Here is a template to get you started.

Dear [Lawmaker name here]

I am writing as a member of the Adult Congenital Heart Association to ask for your help in making a brighter future for all those born with heart defects. Yesterday the Congenital Heart Futures Act, legislation calling for research, surveillance, and education in congenital heart disease, was introduced in the Senate by Senators Durbin and Cochran and in the House by Representatives Bilirakis and Space. I am writing to ask you to co-sponsor these bills (S. 621 and H.R. 1570) and help all those born with heart defects live longer, healthier lives.

Congenital heart disease is this country’s number one birth defect and kills twice as many children as childhood cancer. Although many children now undergo successful heart repair, most will require special life-long care and face high risks of developing additional heart problems. But up until now there has been virtually no federal investment to address the research and education needs of the 1.8 million Americans now living with congenital heart disease.

[Insert 2-3 sentences saying why you care – some examples:

From an adult patient: Since being born in 1956 with a complex heart defect, I have undergone 4 open heart surgeries and am currently on disability due to my heart. I have struggled to get the information and care I need to take care of my rare condition, as doctor after doctor answer my questions with, “we just don’t know”. The federal government should use my tax dollars to do the research to get those questions answered, so that both today's adults and tomorrow's children get better care.

For a parent: My daughter was born with a complex heart defect and underwent three open heart surgeries before she was three. I want to be hopeful for her future, but right now I know there is a severe lack of research, awareness, and resources available to help us help her do well as she gets older. Please help me help my daughter survive to become a healthy, productive parent and grandparent.

From a health care provider: As a doctor taking care of congenital heart patients I struggle to find the information and resources I need to help these patients thrive. These patients face high risks of developing additional heart problems as they age, and we have limited information on best treatment strategies. Many health care providers are unprepared to care for their complex life-long needs. Please help me protect this pioneering and vulnerable population.

To sign on as a co-sponsor of the bill, House Members should contact Dan Farmer with Rep. Space at (202) 225-6265 to discuss support of H.R. 1570. Senators should contact Sara Singleton with Senator Durbin at (202) 224-2152 re: S. 621.

Thank you in advance for your help in securing a future for all those living with congenital heart disease.

Sincerely,

[name]
[full mailing address]
[email]
Make your letter personal to you. The template has a place to add two or three sentences (more is NOT better in this case!) about why this legislation matters to you personally, and offers some samples to help get you started.
Send your email. Be sure to include your full mailing address as well as your email address. Don't use US mail, since thanks to the anthrax scare it now takes many weeks for mail to arrive in Congress.

That's all there is to it! After your done, take a moment to pass this news on to your friends, family and colleagues.

If you are a constituent of Senators Durbin or Cochran or Representatives Space and Bilirakis, we encourage you to email or call their office and let them know how much you appreciate their leadership of this effort.

Need more information? Contact info@achaheart.org with any questions.

Stem Cells: What Does it Mean for Us?

2009-03-10T11:37:00.001-07:00

By now you've likely heard the news - Obama has lifted the ban on stem cell research, which will open the way for many new lines of embryonic stem cells. It's controversial to many, but what does it REALLY mean in terms of research and innovation for the creation of heart tissue?

First, let's clarify what, exactly, embryonic stem cells are. Human embryonic stem cells are our body's most versatile cells, possessing the potential to develop into any cell type in our bodies (with the exception of a placenta). Already such cells have been used to form heart tissues and valves. Embryonic stem cells are created during in vitro fertilization for persons with reproductive issues. Blastocysts are formed, from which the cells are harvested. The permission of the donors are given to donate these cells for research. Only 21 lines of these cells have been researched since 2001, due to a ban Bush placed on further research beyond the existing lines.

In a press release dated March 9, the International Society for Stem Cell Research (ISSCR) applauds President Barack Obama’s executive order, citing its potential to relieve suffering caused by diseases and conditions (including those caused by heart defects). The new policy allows scientists to utilize the many hundreds of valuable lines created since 2001, and relieves them from the substantial hurdles in duplicating equipment and other resources in order to separate privately- or state-funded stem cell research from federal government-funded efforts.

It's a hot topic most of us don't want to discuss in public. But it's a discussion we need to have. What do you think? Does the announcement restore the "integrity to the relationship between politics and science that has been traditional in the U.S.,” as asserted by Irving Weissman, President-Elect of the ISSCR? Would you be a willing recipient of the tissues and valves created in this manner?

Why Me but Why Not Me!

2009-02-24T18:48:00.000-08:00

Why Me? But Why Not Me!
By Mom 2 Andre

Why me? If I only knew how life would have turned out when the day I learnt I was pregnant. I was told on numerous occasions that life would not be the same when you have a child. I accepted it with a smile because I believed that God blessed my life. I was looking forward to the time my little bundle of joy would be here, counting the days on the calendar, earmarking all the doctors’ appointments and ultrasounds that came along with the journey.

Nothing would have ever prepared me for February 12th, 2008. It was a phone call from my ob/gyn, telling me that my little one had an enlarged heart. I remember feeling numb all over, it was a feeling of total despair. What did I do wrong? How could I fix this? What did I do to deserve this. Why me?

Nothing would have prepared me for the birth of my first born. I was induced at 39 weeks of gestation. “It’s a boy!” everyone cried to me. “It’s a boy! Congratulations!” they said to me. I heard my little boy’s first cry; yes, the one I longed to hear from the time I knew I was pregnant. I cried with my husband, and he cried with me. We named him Andre Jacques. Minutes later, my eyes laid on my little treasure, head covered with his little hat, and tightly wrapped in the hospital receiving blanket. This moment only lasted for a few seconds. It was not fair, I thought. He was rushed to NICU, in case something was to happen with his heart. I suddenly felt sad. I wanted to be the first one to hold him like a new mother could. I was his mother after all. No one should not have been allowed to hold before I did. However, because of my c-section, I was only allowed to hold my son 12 hours later. I was mad. Why me?

Nothing would have prepared us for Andre’s first heart procedure, known as valvoplasty. We were waiting to see what happened, how he would develop during the first week of his life. At 6 weeks old, we were at the hospital for a routine echocardiogram. The next thing we knew, I was carrying Andre half dressed from one building to another. I was walking with tears rolling down my eyes. I saw people looking at me, wondering why I was crying. I finally reached the PICU. I laid Andre down on his bed. I stared at him from one corner of the room while nurses frantically hooked his little body to monitors. He looked very pale; his lips had no color. The next day, he was taken away from me for his first heart procedure, not knowing if I were to hold him ever again. His heart was in a bad shape. Why me?

Nothing would have prepared me for the phone call that I received from the cardiologist days later. He told me that the valvoplasty did not produce the outcome he was expecting. Open-heart surgery was in sight. I was in Andre’s bedroom, sitting on the computer chair. I put the phone down and all I could do is cry. I felt helpless. I would do anything for my little guy to avoid surgery. Why me?

Nothing would have prepared me for the last minutes with Andre before he was taken away from me once again. Totally sedated and ready for surgery, he did not know who I was; I could see it in his eyes. Sad images raced though my mind. What did I go wrong? Where did I fail? I wished my family were here. Why me?

Why Not Me? I have everything. I have a roof on my head. I have food on the table. I have clothes on my back. I have a good God. I am healthy. I have the best husband I can ever ask for. I have a supportive family. I became a mother on May 1st 2008.

Andre was diagnosed with a congenital heart defect known as severe Pulmonary Stenosis, Tricuspid Valve Regurgitation, and an enlarged right atrium. I became the mother I always wanted to be, one who would bond with my child at a different level that many would not have the chance to experience.

At 6 weeks old, Andre was in the hospital for his valvoplasty. I did not know if I was going to hold him ever again but I lived to be a mother for another 6 weeks.

At 3 months old, Andre was in hospital for his open-heart surgery. The cardiologist recommended that it were done earlier, but the surgeons advised to wait until he was 3 months old. Ideally, it should been a surgery better performed at 4 months old, but it was too risky to wait any longer. I lived to be a mother for another 2 ½ months.

Through this entire ordeal, I did not have to work a job outside the home. This meant I could be by Andre’s side 24/7/365 during his recovery.

With the medical expenses adding up to unimaginable figures, I had medical insurance to cover all the procedures that were required for Andre.

I live 15 miles north of the country’s best hospitals for pediatric cardiac care.

I have access to great support from the CHD community.

I believe that everything in life happens for a reason. We may not understand it right away, but all I know that each of us has a God given destiny.

I believe that we are the chosen ones to deal with these difficult situations because we can.

I believe that remaining thankful for everything throughout difficult times keeps our heart from allowing anger to stay and develop into bitterness.

I believe that new purposes arise from difficult times.

I once believed in “why me?” Along with extremely difficult experiences with Andre, a new purpose in my life has emerged. Today, I am able to help others through their time of difficulty. I now ask a new question: “Why not me?”

Social Experiment on FaceBook

2009-02-15T20:30:00.000-08:00

Chances are, if you've come across this blog, you're likely also involved in a social network of one kind or another online. Many are on FaceBook... so we've created a bit of a social experiment, trying to pass the word onto others about heart defects and, hopefully, create a free-flowing community of supporters for the cause. If you're on FaceBook, you can find us under causes at "CHD Awareness Campaign."

From time to time announcements about various events throughout the nation will be posted. The cause is not affiliated with any group, but if funds are raised (and some have been), they will all go to the Children's Heart Foundation to further research.

The Care Behind the Kids!

2009-02-14T06:14:00.000-08:00

Mark O'Shea and the Staff of the Pediatric Heart Institute at Vanderbilt Children's Hospital (Nashville, Tennessee) are back! But this is not a music video... it's a nine minute look at the Doctors, Nurses, and Staff of the Heart Institute and what they do. We present this to you on Valentine's Day with love and best wishes from both Kim and Steve!

Carrying the fight to the enemy

2009-02-12T03:18:00.000-08:00

175+ people affected by Congenital Heart Defects (CHDs) attended Lobby Day 2009 in Washington, DC! The attendees were CHD Survivors, their family members, and their cardiologists. Brought together by the National Congenital Heart Coalition (NCHC), members of seven different CHD support groups united to to promote the Congenital Heart Futures Act, a new law that, if passed, would establish permanent federal funding for CHD research. It would also mandate that Congenital Heart Disease is a chronic Illness requiring lifelong care.

After a briefing/training session, attendees were split into groups by geographic location and sent to meet with their Senator or Representative. Steve didn't lobby, but stayed in contact with the groups via telephone and Twitter and blogged the event. His contacts reported fourteen congressional visits, with a high majority of them receiving a positive or very positive reaction. And obviously, those were only a fraction of the total number of visits.

Steve had personally been worried that the vote on the Stimulus bill that was occurring in the Senate would be a "distraction" from our promoting the Congenital Heart Futures Act. It may have been; we will never know. But Lobby Day had been scheduled many months in advance and just happened to fall on the same day as the vote; the only thing that could be done was to work around it.

Although from different groups with varying levels of lobbying experience, our lobbyists meshed quickly and worked together as a team. After all, we have a common enemy: Congenital Heart Defects are the #1 birth defect. A new CHD is detected (diagnosed either at birth or later in life) every 14 minutes! So in the ten hours of Lobby Day 2009, there were 42 NEW cases of a Congenital Heart Defect reported.

The Congenital Heart Futures Act will ensure that their life experience with CHD will be vastly different than ours. That's why this fight is so important.

Inspiration

2009-02-10T19:22:00.000-08:00

There's a great new blog out there by Teri Martin, an adult CHD survivor... Inspiring Hearts. Teri's personal blog, Finding Inspiration Every Day has often been a source of solace for me during stressful work days - she lists simple things she loves, reasons to be happy, tidbits of her life. And her art work is amazing. She says her art is a direct result of her CHD - while other children played sports that were not an option for her, she pursued art - and is thankful for her gift. (Some of her art is featured in this post - more can be found on her Etsy site!)

Here's Teri's story, and an introduction to the wonderful things she's doing to spread awareness, create cohesion in the CHD community between the generations of survivors and to infuse others with hope, creativity and a passion for life.

Inspiring Hearts
by Teri Martin

If I had to pick a word that summed up my life's motivation, it would be inspiration. I was born with Hypoplastic Right Heart Syndrome PA/IVS with moderate TA. Being one of the oldest survivors of this complex disease, I never really knew many people with CHD growing up. So I focused on what inspired me to get through a lot of the hard times as a child and teenager. I could not go play on the playground when it was too cold or too hot, let alone try a sport. So I spent hours creating art and writing. Even as a kid, every time I was depressed I would bury myself into things that inspired me to be something more. My mother would probably say I had a very active imagination.

It wasn't until college where I really met people like me who had CHD. Still, back in college information was scarce, what I could find on the internet didn't make much sense unless you went to medical school. It wasn't until years after I graduated, that I learned about CHD associations like the ACHA. I was a bit hesitant to join, but I eventually I did, when I thought it was best to seek advice from those who could understand me and know what I have been through. So this past May, I went to my first conference, mostly to learn the information that was to be presented to us, but I walked away from the conference with much different objective. I wanted to learn my new friend's stories. The best times I had at the conference where the times we just sat down and shared our lives with each other.

I left the conference inspired to help others. When I returned home I kept thinking that there wasn't any place where we could really share what we have been through. The ACHA message board is great, but was more geared to talking about medical issues which is a great thing, when you want advice, need to vent your frustrations, or just want a friend to listen to you.

While I was at the conference some mothers were there who had young children and they asked us so many questions. When I got home I would have daily emails from parents, and teenagers asking me a lot of the same questions I was asked at the conference. So, as 2009 approached, I drew from something I already loved to do and had been doing for a few years already; I started another blog.

I started off by asking different parents CHD groups to send me questions, I also asked my fellow survivors what questions they think are important to answer. After I had gathered my question I went to my fellow ACHA'ers and asked them to volunteer to answer these questions and tell their stories. The response was overwhelming! Some of these questions are really hard to answer so it takes time, but each week I have gotten back at least one person responses, and I hope to have more in the months to come.

So in January I took my favorite word inspiration and named my blog "Inspiring Hearts ," Living with Congenital Heart Disease: These are Our Stories. I want this blog to be a place where adults with Congenital Heart Disease are able to give hope to future generation of survivors, but also inspire each other to live life even in the face of such challenges.

Thank you, Teri, for all you are doing for the CHD community, your peers and the generations of survivors to come. You are, truly, an inspiration!

Tomorrow's a Big Day!

2009-02-09T20:36:00.001-08:00

Over 200 people are gathering in Washington DC tomorrow to promote the Congential Heart Futures Act. Steve, my co-blogger, will be there, keeping us filled in on the progress, providing some interviews and promoting the cause. I'm disappointed that due to last-minute circumstances I can't make it!

Here at the CHD Blog, we frequently receive stories and poems, some of which we post. There are a lot of heart warriors out there, and, in my mind, it's a wonderful thing. Lately we've received a few emails from a Heart Dad in Kentucky, one of which we posted. Recently he sent a poem to share with our readers. After consulting with my co-editor, we felt it was well worth posting, and hope you will agree, even if you come from a different religious background!

My Life Yet To Come

by David Moore

My days were numbered from the very start

I fought for every breath due to my heart

My PDA closing I started to gasp

Just trying to breathe became such a task

The medicines they worked for a couple of days

But my heart still beating like I was running a race

It was beating so fast it was wearing me out

My heart was failing there was not doubt

My parents were worried, distressed, and confused

The tears now flowing due to the news

Tomorrows the day I go under the knife

I'm not even two weeks and fighting for my life

My lactic's were climbing and my function so poor

I had not the energy to play on the floor

I'm feeling so weak I just want to sleep

Something my mom is watching is starting to beep

I can hear them talking but just don't understand

I am still comforted by the warmth of her hand

The tone in her voice as she started to speak

Something about Jesus and my soul to keep

I have my eyes closed but I still see a light

I'm am very little but I know something's not right

I hear my mom cry as I took my last breath

But I am to young fear this thing they call death

The first thing I saw when I reached towards the glow

Was the figure of a man that for some reason, I know

He wrapped me in his arms and I felt so safe

I reached up to him and I touched his warm face

He spoke so softly and as not to startle me so

He told me he loved me and was letting me go

He told me a story of my life yet to come

That one day my living would be witness to some

I don't know why and I still can't explain

But I opened my eyes when I felt a sharp pain

I took a deep breath and I started to cry

I looked up to see mom with a tear in her eye

Still hooked to wires and lying in bed

For some reason I'm stronger and wanting to be fed

My parents don't know it but I saw God that day

He gave me more time to frolic and play

God has his reasons that some live and some die

What some parents have to endure leaves a question. Why?

I know it's not fair but I don't question the choice

I am a witness for him and I still have a voice

My heart isn't normal but it's perfect you see

Because without it there's no story, no poem about me

I'm one of Gods miracles a testament to his grace

I was only a week old but I got to touch his face.

David, like many of us, saw a need and void in the CHD community, so created a network, kentuckianalefthearts.com.

Within the heart community there is a lot of talk - how many groups are too many? Aren't our efforts too diluted already? Yes, we are diluted, and we need to unite. But are there too many groups? My answer, though many will not agree, is that different people need different levels of support, wish to be active in different ways, and have different overall goals. We all have one thing in common though - we all are, or love, someone with a heart defect. We all strive to make a difference for others that have walked down the often scary and lonely path of CHD survival and loss. We find it in a diverse array of ways, but we are united in spirit and hope for cures, better support systems, increased research and greater awareness.

Share your group's information and services, and we'll be happy to post them here - the more we network, the greater impact we can make!

Five Minutes: A Heart Mom's Story

2009-02-08T19:22:00.000-08:00

It's National CHD Awareness Week! This year we will be posting entries daily, once again - 7 entries for 7 days.

I've had the privilege of meeting some incredible people who work very hard to share their lives with others, opening windows to allow the public to peek into the life of their innermost struggles of living with CHD.

Today's post features the writing of one such person - a heart mom who lays out the truth of the struggles many face with such honesty it stings. Though I haven’t been down the same road she has, I felt like a piece of my heart and soul were read to me. Perhaps some of you will feel the same...

Five Minutes
by Josie Kurz

Five minutes. Probably more time than it will take you to read this post, significantly less than it has taken me to write it. Certainly enough time to change a life.

A Mother's Instinct

Two years ago, when we first contemplated bringing home a sick baby, Michael and I relied upon his medical background to assure ourselves that everything would be alright. But as we came to learn, Claire's health is complicated and in retrospect, it becomes obvious that no amount of schooling could have prepared us for this journey. With no medical north star, we navigated rough waters, lots of tears, and some long nights. Lonely and scared are only the tip of that iceberg.

What became our beacon of hope was the emergence of a primal, almost unworldly instinct. To say that I know Claire is a bit of an understatement. It isn't just that I nursed her, or that I didn't leave her side for the first few months of her life and burned every minute detail of her health into my brain...it is something deeper. Michael has described our attachment by saying that despite their best efforts, our doctors hadn't cut the umbilical cord. Maybe because we are so similar, or maybe because I had to, or perhaps it was a gift from God, but whatever the reason, I know and understand that baby on an almost psychic level. With a little encouragement from some other heart momma's, Michael and I learned to rely on my instinct, particularly when Claire's health began to fail. When I felt something was amiss, something was always wrong.

Year Two

Sometimes I have to laugh at myself and the way that I came to handle the issue of Claire's heart; I tolerated its presence in our family so long as it stayed very quietly in its own corner and allowed us to live very much the way we want to without intrusion. Maybe because in the beginning we coped with diagnosis by clinging to the notion that Claire would get the switch and then be "fixed," it never really settled into my consciousness that congenital heart disease is a chronic illness in every sense of the definition. Once she flew through her open heart surgery, I was convinced that the worst was behind us and I never wanted to look back.

And then Claire got sick.

As I sat by her bed in the PICU, I suddenly realized that we could still lose this baby. For the first time that thought sunk in, and it was as horrendous as receiving the diagnosis all over again...although this time almost worse because by now Claire was more than an idea, a daughter about to arrive, this time she was Claire, a very real and amazing little girl who had stolen the hearts of our entire family. And those eight days were a very difficult battle for us because Michael's instinct was to rely on the opinion of the highly qualified physicians charged with her care and my instinct ran directly counter to their suggestion that, outside of being severely taxed by a difficult and devastating virus, Claire's heart was fine. I can't explain it, but I knew with every fiber of my being that all was not well.

Suddenly, congenital heart disease was no longer something hiding just outside my daily stream of consciousness as something we'd been through, but rather was standing on my chest, gnashing its teeth in my face. Year two of being a heart momma became infinitely worse than year one. There is no fix for this scourge, it's here to stay.

There were approximately six weeks between Claire's discharge from the PICU and her catheterization. During that time we did follow my instincts, and with the help and encouragement from family and friends, went to work creating a plan for managing Claire's health. I remember walking around in a daze, feeling like a live wire. I could feel impending doom, I knew we were facing a bad outcome.

I was convinced that the cath would show heart failure and that we would head immediately for another surgery. I was unreasonably petrified of needing another surgery, of what it meant about Claire's heart, her odds, her long term survival rates. I was so focused on what that cath might show that I never once stopped to worry about the procedure itself.

Laying her down

During our first round at Children's, Claire was still so tiny that they would allow us time to say goodbye and then they would take her away to sedate her and prepare her for the procedure. This time she was old enough that they allowed us to stay with her as they sedated her. What I didn't realize was that this entailed me carrying Claire into the cath lab and laying her on the (adult sized) table as she's still clinging to me; leaning over her with my face as close as possible to hers as they start the medicine and feeling her fight to stay with me. It took a lot of medicine to get her down and it seemed like an eternity that I held her little body as it struggled, but I would have stayed there forever if only to avoid the sensation of her finally letting go. Never have my arms felt so empty. Never had my heart felt so lost.

What were we doing when Claire was in the cath lab? Sitting in the waiting room, reading magazines, laughing at my nephew's antics. I think we wandered to the cafeteria, recalling how the pear trees were in full bloom when we'd been in this position less than a year earlier. I know I was numb, so fixated on preparing myself for the days and weeks ahead. I know I was traumatized by what had just transpired. But I wasn't worried about my baby, not just then.

What was I doing during those five minutes when my baby's heart did not beat? I can't tell you, I don't know. The greatest horror of learning that Claire had arrested for five minutes was the knowledge that I didn't know, during those five minutes, that something had gone desperately and drastically wrong. Me, with my touted mother's instinct and my ineffable connection to Claire...I wasn't aware that it could all be ending. I felt then, and still carry now, this overwhelming anger that I have been robbed of my one final safety net ~ not only could we still lose this baby, but I might not know it as it happens. All at once, the worst wasn't in the past, the worst is the fear of what could come.

In the wake of those five minutes

Who am I in the wake of those five minutes? Surely the mother and wife and daughter and sister that I was before and yet certainly never the same again. Those words are soul-searing, heart shattering, life changing. Nothing can ever be the same again. And yet, we had no time to stop and process, barely even time to grieve. What do you do? What can you do? We went first to the Chapel to turn everything over to God, by whose hands I believe all of our fates to be sewn. And then to our daughter, so tiny in that bed, surrounded by a very skilled team of physicians working to keep her here with us.

It's a blur, a pain-filled hazy blur from which I have spent the past nine months running. The walls penning in those five minutes and the havoc they wrecked on my heart and my soul began to crack in November. Suddenly, in the midst of a headache-induced daze, I found myself confiding these exact thoughts to confidantes who are the very few who could actually understand that pain, my sisters on this agonizing road, mothers to heart daughters, achingly familiar with this burden.

Leaving 2008 in 2008

Only now can I put into perspective the fallout of those five minutes. I freely acknowledge that those moments irrevocably changed me but I sense that the fallout had a wider impact. Because it is precisely what it is, no one wants to discuss it. Within our family, the ripples have been felt quietly; but families carry on, buoyed by love and understanding. Friendships seem a bit more vulnerable. While some have grown stronger, others seemed to wither on the vine and I didn't exactly understand why until I read this fascinating insight on another blog (in the context of how friends and relatives respond to a parent's grief):

"like the mourner, friends and relatives are often angry that this bad thing happened, angry, perhaps, at the universe, the gods, the unfairness of it all. But, in many cases, I think they're also very angry about the loss of their old relationship with the mourner. They don't know or particularly like this new, sad person. They want things to go back to the way they were, to reconstruct the world in the shape it was before everything shattered. At some level they realize that that's not going to happen, but it's probably not all that uncommon to be [angry] at the griever, blaming them for making it impossible...many friends don't express these feelings directly or, perhaps, aren't fully aware of them."

When I read this passage I had such a strong feeling of recognition that I felt almost ill. To be honest, there are times when I myself am angry that this has all happened and, on some level, I would love to go back to the person I was before Claire, to the relationships I had then...but not if it means going on without Claire. And then I feel frustrated that there are those out there who expect me to be the person I was two and a half years ago, who can't understand how impossible that might be.

Maybe because of those five minutes I am suddenly able to be gentler to myself, more protective of myself, more forgiving of myself than at any other point in my life. I know I have been traumatized, I know that I suffer through bouts of PTSD and depression, I know that I experience intense anxiety about the things that are in God's hands only. I allow myself to deal with those emotions, to be sad when necessary, to cry, to worry, to hover. But I also refuse to let myself wallow in the negative, because bottom line, I still have my baby girl laughing and running and dancing and getting into all kinds of mischief (not to mention her beautiful and healthy big sister, a true light in our lives). As Michael said from the very beginning, we will endure unspeakable pain and suffering now if it means that Claire will never remember the struggle or understand what we (and she) went through in order for her to survive. While those five minutes devastated me, they were same five minutes that that allowed Claire's failing heart to return to optimal functioning.

Looking Ahead

So to me, 2009 is full of promise. I enter it feeling older, wiser, and more purposeful. I have set goals for myself, some involving letting go and others, starting anew; moving forward in ways that were too overwhelming to contemplate last year but seem natural and comfortably enticing now. I accept the truths that I learned in 2008 and I honor them by living life to the fullest, by loving my children with everything that I have in me, finding joy in our moments together, carving out special time with my husband and giving myself space to be who I am and to feel how I feel. Every day is a gift, and so even when it's storming, I intend to get us out there, dancing in the rain.

CHD Survivor Video!

2009-02-05T18:40:00.000-08:00

This is Mark O'Shea's video for the song "Look at You Now!", filmed at the Vanderbilt Children's Hospital Pediatric Cardiology Unit. As you'll see at the end of the video, Mark's one of us!

Enjoy!

It works better when you work together!

2009-01-26T11:17:00.000-08:00

It’s hopeless.

We can’t do anything.

That is what parents of babies diagnosed with Hypoplastic Left Heart Syndrome (HLHS) were told not many years ago. The word Hypoplastic means “underdeveloped”, and that is exactly what has happened: the heart’s Left Ventricle is much too small to pump blood to the body. The hypoplasia extends much further than the Ventricle; the Aortic and Mitral valves are tiny (or nonexistent), and the Aorta itself is tiny. The child is alive only because of a Patent ductus arteriosus, a “built in” heart defect everyone is born with.

The Ductus Arteriosus is a small connection between the Pulmonary Artery and the Aorta that allows the heart to function while still in the womb. Once the child is born, the connection will close by itself, usually in less than two weeks. A connection that is “stuck open” — a Patent ductus arteriosus — is easily corrected. But in this case, when the ductus closes, blood flow drops and the child goes into shock.

HLHS was the defect the doctors had no answer for. Obviously, a surgical repair was the only option, but how? How do you fix a heart that is, for all intents and purposes, missing the left half? A heart transplant was an option, but rarely was an infant’s heart available, and there was almost no time to find one.

But in the early 1980’s the answer came. Rather than try to fix everything at once, make the repair in stages. Three operations, (known collectively as the Norwood Procedure) performed in sequence, allowed the child to survive. Certainly it was understood that this wasn’t a cure, but the child could live if he or she received lifelong medical care.

Fast forward to 2009. The first generation of HLHS survivors are now in their early to mid 20’s. And with no older survivors, no one has any idea what future health problems may affect them. Like Edmund Hillary climbing Everest, no one’s been here before, and no one has a clue what's ahead.

The CHD Blog and Adventures of a Funky Heart will both be in Washington, DC on February 10, 2009 to support the National Congenital Heart Coalition (NCHC) effort to create a national registry of patients with heart defects. The NCHC is made up of several different CHD organizations, working together for the first time. The American College of Cardiology, the Adult Congenital Heart Association, It's My Heart, the Congenital Heart Information Network, Mended Little Hearts, and the Children's Heart Foundation have all come together to work for this important cause. (The group information is taken from the cover of the informational packet that was mailed to attendees; there may have been more groups that have joined the effort since then!)

If data is gathered about those of us living with a Congenital Heart Defect right now, it could be analyzed and used to predict our future health care needs. It can also be used to make things a little easier for the next generation of CHD patients. As an example, I take 11 different medications. Yes that is a lot, but some CHD’ers take more, and some take less. If the knowledge gained from a national registry could eliminate one medication that each of us has to take, the savings would be phenomenal.

Much too often you read in your local newspaper about the child who needs surgery for a major heart defect (Infant Survives Heart Surgery, reads the title of the one and only article about me in the local Daily Planet) but what happens after that? Usually you don't see a follow up article in the local press. But Cardiac Kids grow up; we get jobs, pay our taxes, fall in love…

... In other words, we live our lives.

Pick them up and put them down!

2009-01-19T12:14:00.000-08:00

It's a proven fact that exercise improves your fitness level. If you have a CHD, that's important: Strengthening a damaged heart can make it work better, function longer, and be more resistant to shock if you happen to have a health crisis. In short, exercise can extend your life.

For any exercise to be effective, your heart and respiratory rate have to increase - safely! So be sure to consult your doctor before beginning any exercise program. If your doctor clears you for exercise, be sure to ask if he/she recommends a certain type of exercise. Be sure to start slowly and build your strength.

Music can make your exercise routine go by faster and keep you going when your body says "Wait a minute!" You also tend to move with the beat: faster music makes you work harder. Don't believe me? American Pie is a classic song, but just try to exercise to it. 500 Miles by The Proclaimers works much better!

This website will sell you "workout music" with faster or slower beats, depending on how intense you want to exercise. Or you can download your favorite MP3's. Either way, if your doctor approves, get out and get moving!

Put down the Vicks!

2009-01-14T09:53:00.000-08:00

No, not Michael Vick, the former NFL quarterback... that subject is an entirely different post for an entirely different blog! We're talking about Vicks VapoRub, which can be found in nearly every medicine cabinet in America. I bought a bottle myself the last time I was at the drugstore. We all have memories of our moms coating our chests with VapoRub when we were sick. Recent research has proven that we were all doing it wrong.

"The ingredients in Vicks can be irritants, causing the body to produce more mucus to protect the airway," said Bruce K. Rubin, MD, of Wake Forest University. While that's not good for anyone, it's especially not good for small children. And even though the report doesn't mention this, it can't be a good thing for someone with any airway issues... including a Congenital Heart Defect.

The study showed that VapoRub increased mucus secreation 59% in healthy, uninfected lungs. Even when a child is healthy, that much mucus could lead to airway inflammation and irritation, possibly closing the airway. Also, VapoRub doesn't actually make it easier to breathe. The menthol triggers a cold sensation as it enters the nasal cavities, which tricks the brain into believing there is increased airflow.

Newborn Screening Test Could Save Lives

2009-01-08T17:32:00.000-08:00

Research paper: Impact of pulse oximetry screening on the detection of duct dependent congenital heart disease: A Swedish prospective screening study in 39,821 newborns

The British Medical Journal

Routine screening of blood oxygen levels before discharge from hospital improves the detection of life threatening congenital heart disease in newborns and may save lives, according to a study published on bmj.com today.

The low false positive rate of pulse oximetry screening and the reduced need for treatment because of a timely diagnosis also makes this a cost effective intervention, say the authors.

Pulse oximetry screening has been suggested for early detection of congenital heart disease, but its effectiveness is unclear.

The authors found that in apparently well babies ready for discharge a combination of clinical examination and pulse oximetry screening had a detection rate of 82.8% for duct-dependent heart disease. The detection rate of physical examination alone was 62.5%. Pulse oximetry also had a substantially lower false positive rate (0.17%) compared to physical examination alone (1.90%).

However, some babies had been detected before discharge examination, meaning that the introduction of pulse oximetry screening in West Götaland improved the total detection of duct dependent heart disease to 92%. This was significantly higher than the 72% detection rate in other regions not using the screening technique. Interestingly, improved detection was achieved by a maximum of just five minutes of extra nursing time per baby.

Links for CHD Families

2009-01-08T09:17:00.000-08:00

Here are several very important links for you to read today. Read them online, download them, or print the file, whichever you choose. If you try to download the file as a .pdf document, you won't be able to... the writers are trying to protect their work, you can read the details on the download page. But you can print the entire file, which is just as good! The only bad thing is that these links are from medical journals, written by doctors for other doctors. It's almost 100% medical terminology, and you'll probably have to have an interpreter.

Tetralogy of Fallot (ToF) in a seven year old girl

Some thoughts on Tetralogy of Fallot (ToF) surgery

The Fontan Procedure... what's down the road?

This next link refers to the Glenn Shunt, and has a very good illustration. The illustration, however, is of the Classic Glenn Shunt, which was first used in the 1950's. The modern version, the Bi-directional Glenn Shunt, was first described in 1966 and not popular until the 1970's.

Click the .pdf button to be taken to a three page file concerning both versions of the Glenn Shunt. This is important reading for anyone who has a Glenn!

This link has more layers of information than a seven layer Chocolate Cake! Above the illustration, click the heading labeled "Contents"; there you can find 40+ links to heart defects, surgical procedures, and case studies. There is lots of information here, and not just on the Glenn Shunt.

Who We Are

2009-01-06T10:59:00.000-08:00

So who are we?

We’re 1 out of every 120 people... there’s a new one of us every 14 minutes. We are both genders and we are all ages. A million of us are adults, and about 800,000 of us are children.

We’ve made it through surgeries, hospital stays, infections, Endocarditis, pacemakers, and Heaven know what else. We’ve given gallons of blood, one vial at a time. We’ve fought back against tremendous odds. We’ve been so sick that we’ve scared the world’s best doctors witless… and then amazed them even more when we recovered.

We aren’t related by blood but we are a family. We call ourselves the Cardiac Kids and Heart Warriors. We have an amazing inner strength, but we are terribly fragile at the same time. We know that most of us shouldn’t even be here and so we live every moment as if it is our last. We’ve celebrated our victories and we’ve mourned our losses. Our heroes include a Flying Tomato, a golfer, and a former movie star, because we are them and they are us. Our parents are Heart Dads and Heart Moms, and we consider those titles as Badges of Honor. They deserve it; they were the first ones to discover that a heart defect doesn’t just break one heart... it breaks three.

We work, we play, we pay our taxes and we live our lives. We’re in your community, in your church, in your school, in your office, and quite possibly in your home. We move a little slower, do some things a little differently, but we usually get along without causing a fuss.

We are people living with Congenital Heart Defects.

Welcome, Steve!

2009-01-06T06:17:00.000-08:00

It is with great pleasure that the CHD Blog introduces a new contributor... Steve!

Steve, who blogs at Adventures of a Funky Heart, is a 42 year old male born with Tricuspid Atresia. Despite three heart operations, a stroke, and a pacemaker, he lives and thrives in rural South Carolina.

Over the past several months, Steve has allowed us to cross-link to some of his excellent entries. Now, Steve will be adding content to the CHD Blog on a more regular basis. We welcome Steve, and look forward to the wealth of information and insight he'll be providing! Be sure to visit his blog, which provides a front-row seat to the issues (and joy, and pain and pleasures) relating to life as a CHD survivor.

Second Opinions: It Never Hurts

2009-01-05T10:29:00.000-08:00

The following letter arrived in the CHD Blog's inbox from Farshid Bayat...

My daughter Ava was born with DORV, D-TGV, PDA, large VSD, ASD and COA on 21 October 2006. In a nutshell, Ava had two surgeries at the ages of 2 and 12 months. Her final surgery took place on 27 April 2008. Although most of the cardiac pediatricians we had visited before were of the opinion that Ava's life could not be saved, the excellent pediatric cardiac surgeon Dr. Navabi Shirazi managed to thoroughly repair the main defects in a ten-hour surgery. Ava was discharged from the hospital after a ten-day stay.

Today Ava acts like any other child with no physical restrictions. She is a bundle of energy who loves running and playing football with her older friends. Parents of children with CHD should remember to ask for a second opinion before choosing a surgeon. Had we known about Dr. Navabi from the very beginning, Ava would have been treated by only one surgery.

I wish I could say that it's the only time I've heard of such a story, but it simply is not the case. Until we have a central registry of CHD cases and better reporting information for CHD cardiac care facilities, the need for second opinions will remain vital in your (or your loved one's) quality care. Many times, at diagnosis, we have little time to prepare. We may feel comfortable with the individual(s) who provide the diagnostic results and recommendations, and be lulled into a sense of comfort in working with them. But I urge patients and parents alike to be diligent - ask those tough questions, research the facility and its staff carefully and talk to fellow CHD survivors and families when you can - it can make a tremendous difference.

No Flu for me, thank you!

2009-01-02T20:38:00.000-08:00

It's a given that Congenital Heart Defect Survivors need to try to keep themselves as healthy as they can. Our weakened bodies are susceptible to just about every illness that comes along, from the common cold to that winter monster... the Flu!

The first thing you should do, of course, is check with your cardiologist. If he/she recommends it, get the flu shot! This should be second nature to us by now - when the weather gets cold, we put on an extra layer of clothes, try to remember where we stored our gloves and scarf, and get the flu shot.

There are two web based resources that can also be useful in fighting the flu bug: The Centers for Disease Control (CDC) maintains a web page dedicated to information about the flu. They also offer an online weekly flu report. The weekly report usually refers to last week - it take a little time to compile all the information - but it is a very detailed assessment of Flu Activity in the United States. If you love numbers, charts and graphs, the weekly flu report is just your thing!

Google also offers a "flu tracking service", in a sense. They have flagged the words "flu" and "flu symptoms" in their search engine, and also flagged words that describe most of the major symptoms of the flu. They figure that when people start feeling sick, a lot of them will sit down at their computers and Google their symptoms. A lot of people do exactly that - and Google collects and tracks that information.

The result is Google FluTrends, a chart showing the number of people typing the symptoms into Google's search engine, along with a map showing the states those searches are coming from. Google says that unlike the CDC weekly report, their system anticipates the Flu. Because people tend to look up their symptoms as they appear, Google claims FluTrends is actually a day or two ahead of an outbreak. According to FluTrends, Texas is not the place to be right now!

Who's right? CDC has been tracking contagious illness for a long time, and they are good at it. But Google seems to be on to something... so why not use both?

Poem: My Son

2008-12-19T16:38:00.000-08:00

The following poem was submitted and written by David, self-described "husband to the most beautiful wife and the two most beautiful children (Thomas David, 2, HLHS) and Cadence (HH) a father could ask for." Thank you, David, for sharing your work! David created a support site at www.kentuckianalefthearts.com.

My Son

My Son was born on a warm summer's day
With me pacing the floor in a proud dad's normal way
Not knowing of challenges that were still yet to come
That would change my life in more ways than one

Holding my son for the first time I cried
Thinking of all of the years that his mommy and I tried
Still not knowing how sick and tired he would be
After his heart was wearing out even before week three

We were going home and it was just a day away
When something happened that almost ended our day
The doctor came in and showed us his heart
The news was so shocking it tore my life apart

The shock so horrible and the news so bad
My life was now ending I was wishing that it had
Our journey had begun one we didn't want to start
How a boy as sweet as him could be born with half a heart

It must be a bad dream and it can't possibly be fair
For a moment life stood still as we looked with a blank stare
I was numb all over and my tears dried on my face
Our doctor had informed us to get ready for the race

It would take our emotions from valleys to peaks
One day we are happy to the next no one speaks
We prayed God would show David mercy and grace
As we sat down to ponder with a look of fear on our face

We made it through the Norwood with help from up above
God surrounded us with people that we would grow to love
Those people were doctors and nurses and family and such
That showed our family they cared with the love in their touch

After a month of a struggle for our little guy
We were allowed to take him home with a gleam in his eye
I remember like it was yesterday as I welled up with tears
My eyes kept filling up it seemed like for years

Happiness filled the room as we started to pack
Still not knowing the future or what to expect
I gained my composure and prepared to go home
Not knowing it had changed me and my life yet to come

For you see spreading awareness has become my whole life
Not wanting a parent to have to suffer this strife
We have been through so much I still think we have won
Because everyday I wake up I still have MY SON

A Day to Remember

2008-11-29T19:57:00.000-08:00

On this day in 1944, the pioneers in surgical repair of congenital heart defects completed the first successful CHD surgery. So many of us owe our lives, or our childrens' to these two innovators. Steve, of Adventures of a Funky Heart, gives us a brief history lesson today... not just on these two incredible people, but on the unsung hero who REALLY made our, and our children's lives possible in the face of CHDs.

As part of a prolonged weekend of thanks giving, take a moment to send a little thought or prayer of thanks to the hundreds of unsung heroes working to save us.

From Adventures of a Funky Heart...

Vivien Theodore Thomas was born on August 29, 1910 in Lake Providence, Louisiana. After graduating high school in 1929, he planned to attend Tennessee Agricultural and Industrial State Normal School, (now known as Tennessee State University) with hopes of becoming a doctor.

He had been in school two months when the stock market crashed, causing him to lose his part-time carpentry job. Forced to drop out of college, Thomas still found work as a Lab Assistant at Vanderbilt University Medical School, working for surgeon Dr. Alfred Blalock. Although hired to sweep floors and clean out cages, Vivien Thomas impressed Dr. Blalock with his intelligence. Blalock was so impressed that he trained Thomas to be his Surgical Technician.

Thomas began assisting Blalock in the study of shock during surgery. Shock is caused by a sudden drop in blood flow through the body, and can be fatal. Working together, Blalock and Thomas developed ways to prevent shock from occurring during an operation. By World War II most of their theories were in use, saving the lives of countless injured soldiers.

In 1941, Dr. Blalock was hired by Johns Hopkins Hospital in Baltimore, Maryland, to serve as the hospital’s Chief Surgeon and as a Surgical Professor in the Hopkins Medical School. The doctor asked his trusted assistant to go with him, and Thomas agreed. But while Blalock was responsible for training every surgeon in the school, Thomas had to enter the building through the service entrance. He was also listed on the hospital payroll as a handyman.

The two men respected and trusted each other, but were hardly equal. At one time, Blalock was paid ten times more than Thomas. Often the doctor hired Thomas to serve drinks in his home during a social event. And never was Thomas allowed in the Operating Room.

It was at Johns Hopkins that the two men met Dr. Helen Taussig. Taussig had been hired in 1930 to oversee the Cardiac Clinic of the Harriet Lane Home, and quickly grew interested in “Blue-Baby” diseases.

Usually, blood coming into the heart is routed first to the lungs, where it absorbs oxygen. The oxygen rich blood then goes back to the heart, where it is pumped throughout the body. Blue Babies are born with a badly formed heart or blood vessels that cannot provide enough oxygen to the blood. Their skin has a distinctive blueish tinge, especially in the fingertips. At that time Blue Baby diseases were incurable, and almost all of the patients died very young.

Dr. Taussig approached Dr. Blalock with an idea: if a Blue Baby’s heart couldn’t provide oxygen to the blood naturally , then why couldn’t a surgeon re-route the major blood vessels? Taussig’s plan was interesting but extremely dangerous. The operation would have to take place near the heart, and heart surgery was so risky it was almost never recommended. Any accidental damage to the heart would have to be repaired within 4 minutes, or the patient died.

Busy with his teaching duties, Blalock asked Vivien Thomas to work out the details of how such an operation could be done. Thomas began by studying medical textbooks, drawings and diagrams of hearts, and even real hearts taken from dead bodies. Then he operated on dogs, intentionally creating Blue Baby hearts in them. Later he would operate again, repairing the heart and making careful notes of everything he did. It was a slow process, learning exactly what had to be done. Many dogs died, and several of the surgical tools he needed didn’t even exist. Quite often, Thomas would invent them.

X-rays of the patient were another problem. X-ray films provide a good still photograph of the workings of the body. But Taussig preferred to use a fluoroscope. A fluoroscope image is best described as “X-ray TV”– It provided moving images of the interior of the body. If the patient accidentally moved, so did the picture. There was no way to record the fluoroscope image, so the three doctors would have to study their patient’s fluoroscope scans carefully and commit them to memory.

At last they felt they were ready, and Taussig began to search for a proper patient. On November 29, 1944, they operated on a little girl named Eileen. Although fifteen months old, Eileen only weighed nine pounds.

Thomas had planned to be in the observation room, watching the operation. Blalock said no – he felt more comfortable with Thomas close enough to give him advice. In preparation for the operation, Thomas had performed the procedure over 100 times on animals. Blalock had been taught the procedure by Thomas, but had actually done it only once. Breaking all the rules of the time, Thomas entered the operating room and guided Blalock through the operation.

Eileen’s heart never stopped beating and her blood vessels were only as thick as a matchstick. After about 90 minutes, Blalock was finished. Everyone held their breath as he removed the last clamp from a blood vessel. After a long pause, Helen Taussig said “Al, the baby’s lips are a glorious pink color.”

Proven to be a success, Blalock’s team performed nearly 300 operations in less than a year. Surgeons came from around the world to study Blalock’s new surgical procedures, only to learn that Thomas was the expert, not Blalock or Taussig. Still, the operation was known as the “Blalock-Taussig Shunt,” named for the surgeon who performed it and the doctor who suggested it.

Blalock retired in 1964 and died four months later. For six years, Thomas continued to teach but took on no major project – almost as if he were in mourning. But as the 1970’s began, more and more African-Americans were entering the Hopkins Medical School. To them, Vivien Thomas was not just one of their teachers, he became their mentor. And just as he had guided Blalock so many years before, Thomas’ advice and support guided a new generation of doctors through medical school.

Thomas died in 1985, just a few days before his autobiography was published.* Today, Vivien Thomas is almost unknown to the general public. But Dr. Alfred Blalock never forgot him. If someone stood too close to his right shoulder during an operation, Blalock would tell them to back away. “Only Vivien may stand there.”

* Thomas’ autobiography has been reissued with a new title: Partners of the Heart: Vivien Thomas and his work with Alfred Blalock.

Stem Cells May Help Repair Valve Defects!

2008-11-12T06:37:00.000-08:00

Bloomberg Science, Nov. 10 -- Cardiologists at the University Hospital of Munich believe that umbilical cord blood, rich in stem cells, may bre the raw material needed to repair the hearts of thousands of children born each year with defective heart valves. The researchers reported the findings at the November 10 annual meeting of the American Heart Association. They believe they are 5 to 7 years away from transplanting new valves created from cord blood with patient's faulty valves.

The Munich researchers are ready to begin trials in lambs, using collected cells (frozen for preservation) to seed into biodegradable polymer scaffolds. Thus far, eight bio-engineered valves have acted much like natural heart valves when tested for blood flow and pressure. The scaffolds will disolve over time, leaving behind a fully formed structure made from the cells, they assert. The next step will be to transplant the heart valves into hearts of young lambs, watching them to see how they grow and function over time. The experiments are hoped to begin next year.

Click here to read more...

No Drop in IQ Seen After Bypass

2008-11-11T06:29:00.000-08:00

ScienceDaily, Nov 10, 2008 -- Good news for older children facing cardiopulmonary bypass, or CPB. Scientists at the Cardiac Center of Children's Hospital recently conducted a study of children aged five to 18 who underwent heart surgery while on a heart-lung machine to circulate their blood. The research found that the use of CPB does not cause short-term neurological problems in children and teenagers after surgery for less complex heart defects (such as valves or ASDs/VSDs), according to pediatric researchers. The new finding contrasts favorably with previous studies that showed adverse neurological effects after newborn surgery for more complex heart conditions.

Click here to read more...

We NEED Your Story!!

2008-11-10T19:49:00.001-08:00

As a parent of a child with CHD or a CHD survivor, we often can feel lost in a sea of other causes. Now you can take the helm of awareness and steer it toward change, by sharing your story with your congress representatives.

Many of you have expressed a willingness to share your personal stories of battles, both those lost and won, in an effort to raise public awareness of CHD. This is an excellent way to allow the voices of our children, family members and ourselves to be heard!

In effort to provide a united front as the National Congenital Heart Coalition (watch for their new website, to be launched this week!), a Mended Little Hearts volunteer, Amy, has volunteered to create books that will be provided to congress men and women during Lobby Day 2009.

Guidelines for Submission:

Content and Accuracy: Emotion is a powerfully persuasive tool. So are numbers when supporting the financial hardship that can result from CHD. Please try to be accurate and describe the details of your story, and try to convey the burden faced by survivors, families and friends. Remember, the purpose is to emotionally engage the reader regarding the impact of CHD, increasing awareness and compassion for the lifelong disease.
Format: Stories need to be 1-2 pages, in a .doc or .txt format. Please check for
spelling and grammar. Along with your story, please submit two, high quality photos, one of which is in a medical setting, such as during a hospital stay, doctors office visit or procedure.
Disclaimer: Please understand that your story may need to be edited to fit our standardized models and formatting needs!

DEADLINE: December 15, 2008

Click here to submit your story.

ACHA's Top 10 for Adults with CHD

2008-11-10T12:09:00.000-08:00

Source: EmaxHealth, 11/8/08

Today, most children born with CHD have a good chance of living well into adulthood, thanks to research and innovation. However, the increasing adult CHD population poses a problem - many adult cardiologists are unfamiliar with the resulting heart anatomy and physiology that results from surgical repair. Adults with CHDs are encouraged to see specialists that are familiar and experienced with CHD. Check out Kansas City's Fox Affiliate for a recent health update and interview!

In an effort to assist cardiologists in their every day decisions for adults with CHD, the American College of Cardiology and the American Heart Association have jointly released a comprehensive set of practice guidelines. The guidelines—the first of their kind in the United States—appear in the December 2, 2008, issue of the Journal of the American College of Cardiology (JACC).

ACC/AHA 2008 Guidelines for the Management of Adults With Congenital Heart Disease include:

Given current surgical mortalities of less than 5%, in the next decade almost 1 in 150 young adults will have some form of congenital heart disease (CHD).
There should be enhanced education of adult cardiovascular specialists and pediatric cardiologists in the pathophysiology and management of adult CHD (ACHD) patients.
Practitioners are provided with logical well-conceived care plans for patients with simple (e.g., isolated small VSD), moderate (e.g., tetralogy of Fallot) and complex (e.g., cyanotic congenital heart defects) lesions.
Consultation before pregnancy, including genetic counseling, so that both men and women with ACHD should have a thorough understanding of the risks of transmitting CHD to their offspring.
ACHD patients should carry a complete medical “passport,” listing specifics of their past and current medical history and contact information for immediate access to data.
A formal transition process should be used to help teenagers and young adults cross the bridge from their pediatric cardiologist to an adult cardiologist.
ACHD patients must be informed of their potential risk for infective endocarditis and should be provided with the AHA wallet card with instructions for prophylaxis.
Outreach and education programs should be organized to bring patients back into the healthcare system if they are no longer receiving appropriate care and follow-up.
Health care should be coordinated by regional ACHD centers of excellence.
Every ACHD should have a primary care physician

Source: Warnes et al ACC/AHA 2008 Guidelines for the Management of Adults With Congenital Heart Disease: a report of the American College of Cardiology/American Heart Association Task Force on Practice Guidelines (Writing Committee to Develop Guidelines for the Management of Adults With Congenital Heart Disease). http://circ.ahajournals.org/cgi/reprint/CIRCULATIONAHA.108.190690

An Insurance Story

2008-11-03T19:19:00.000-08:00

Lately we've been receiving quite a few stories from families that wish to share information that may help others. We'll now begin posting them regularly! Meet Lauren, a CHD mom who describes her battle with insurance...

I'd like to share our story. When I got pregnant with our 1st daughter I was covered by my employer's health insurance. When we found out about her heart issues - HRHS, pulmonary atresia, Ebstein's Anomaly - we were told we'd have to deliver in the lower 48 as we live in Alaska and there are NO heart surgeons here who do kids. We chose Seattle.

The Children's Hospital said I should apply for Medicaid; a lot of their kids from AK were on it, they said. I at first thought "no way" because I thought that since I have a job and insurance that I didn't need it, wouldn't qualify. We got on and were lucky we did as her delivery, 1st surgery, and all costs for her 1st year were covered 100% - including her 2nd surgery, travel to Seattle, staying there, as well as all the PT and OT services she needed. When she got to be 1, we heard about a program called TEFRA, which in Alaska also covers kids with complex medical conditions; provided they also meet a certain "level of care" threshold. She got on that and was covered until it came time for our 2nd renewal - before she turned 3. They said she didn't meet the "level of care" requirement. We said "BS" and appealed, got an attorney, the whole 9 yards. We said that she has the complex condition, and she hasn't even had all her surgeries - she still needs 1 more. Plus she takes a Heart med and aspirin, and she still needs therapy services - documented now by the school district, since she qualified for special needs preschool due to her need for therapy. They still denied us - their rationale for deciding she didn't meet the criteria??? I worked and I had to put her at a babysitter's house!!!!

So, now I am lucky to work for a large company, widely recognized as one of the best places in the country to work, so I get good benefits (thank heavens). Before I got hired, I was pregnant again, and in a last ditch effort to provide full insurance for my daughter, I applied for Medicaid again. I got on because I was pregnant. She didn't. There are 2 different income levels they use for qualifying you, and she was evaluated on a lower one because she technically already had coverage (I was a contractor for the Feds and got the barest of bare bones coverage from that). However, when I got my new job, during open enrollment, I saw that a high deductible plan covered everything at 100% after you meet the deductible. I quickly signed up for that for this year because I was pregnant, so I knew we'd meet the deductible. I also knew I would never have to pay a penny of it because Medicaid would pay all costs insurance didn't, and by the time our daughter needed a 3rd surgery, this last March, I thankfully did not have to pay a penny of it - though we did have to pay for airfare, and a token fee at the Ronald McDonald house, as well as food.

Next year, I don't know what I'll do, I just pray she stays healthy and out of the hospital.Thanks for letting me share!

~Laurel Nelson
Anchorage Alaska

Thank you for sharing your experience navigating the insurance maze, Laurel.

Do you have a story you want to share? Tips for CHD survivors or parents? Send them to us at learnaboutchd@gmail.com and we'll be happy to share them here in cyberspace!

Free Webcast on Complications of Adult CHD

2008-11-02T18:39:00.000-08:00

Webcast, Patient Power®, to discuss
“Under-recognized Complications of Adult Congenital Heart Disease”
Wednesday, November 5th

6:00 pm – 6:30 pm Pacific
Oregon Health and Science University presents
“Ask the Experts” with Andrew Schorr at www.patientpower.info

Significant amounts of people are born with heart defects, many of them with congenital lesions. Because of new improvements in surgical and medical therapies, increasing numbers of these children are now patients in adulthood. Still, these patients remain vulnerable to dangers and complications of congenital heart disease. Join two Oregon Health and Science University experts, Dr. Craig Broberg and Dr. Joseph Weiss, as they unravel misconceptions and underline important factors for a disease that is often under-recognized. Both experts will help us understand long-term issues that commonly arise, the role of congenital heart disease in pregnancy, and heart rhythm disturbances. Tune in to hear a conversation with highly knowledgeable experts for a closer look into a condition many are living with.

WHO (FEATURED GUESTS):
Craig Broberg, M.D.: Pediatric Cardiologist, Oregon Health and Science University
Joseph Weiss, M.D, Ph.D.: Cardiologist, Oregon Health and Science University
Andrew Schorr: Host and leukemia survivor
WHEN: Wednesday, November 5th, 2008 from 6:00 pm – 6:30 pm Pacific

HOW TO PARTICIPATE: Listen at www.ohsuhealth.com/experts

ABOUT PATIENT POWER: Patient Power debuted in February 2005 and is a weekly show hosted by Andrew Schorr, eleven-year leukemia survivor, patient educator and patient advocate. The show features renowned medical experts on topics that include cancer, pain, diabetes, and heart specialists, as well as experts in clinical trials and top pharmacists. The show serves to bring patients together in a radio and Internet community to help navigate an often inhospitable healthcare system. Patient Power takes questions from callers and Internet listeners on topics such as how to find the right doctor, how to advocate for effectively, when to get a second opinion from a specialist, and how to evaluate one treatment option over another.

Become a CHD Advocate!

2008-10-29T06:39:00.000-07:00

When you are a survivor, or a parent of a child that is or was affected by a CHD, you often feel helpless in a sea of insurance, legislation and lack of information. Many many of us never knew that 1 in 120 children born each day are affected with CHD before we received a diagnosis. And almost everyone affected wants to change that.

Many groups across the U.S. are working on providing support and comfort to people affected by a CHD diagnosis. But who is working with our legislators and government agencies to bring about desperately needed change? How can we create a better future for CHD survivors?

The answer? The National Congenital Heart Coalition. Formed just over a year ago, this coalition is the culmination of six major, US national groups' efforts to create a climate of change for our disease. We seek to create better avenues of awareness and advocacy, which in turn will lead to greater focus on research and technological advancements that will save lives through earlier diagnosis, better screening, advancements in quality of life and surgical breakthroughs. Consisting of the Adult Congenital Heart Association (ACHA), the Children's Heart Foundation (CHF), Children's Heart Information Network (CHIN), Mended Little Hearts (MLH), Saving Little Hearts, It's My Heart (IMH) and Little Hearts, this newly founded organization is already making strides in unifying our cause. Current projects include the creation of a unified message, creating a presence in government agencies who monitor CHD and distribute funds for research and, most recently, a unified effort in lobbying our government for a central registry of CHD statistics.

Lobby Day has been a significant effort undertaken by the ACHA over the two years. This year, the entire National Coalition (NCHC) is behind the effort, and YOU are invited to help us make a difference! You are welcome to attend the lobby day, which will be held on February 10, 2009 in Washington DC. Or, you may learn how to participate in your own local area.

Online registration is now open and available at: www.achaheart.org/getinvolved/lobbyday2009.php.

CHD Death Incidence in Infancy

2008-10-20T10:01:00.000-07:00

Source: Patient Health Information, 13 October 2008

MedWire News: A significant number of babies are dying soon after birth because of undiagnosed congenital heart disease, a US study suggests.

To examine the extent of the problem, researchers from the University of California used the California death registry for the years 1989−2004 to assess data on 898 infants who died of congenital heart disease between birth and 1 year of age.

They found that, in total, 152 of the babies had a missed diagnosis of congenital heart disease. The average age at death was 14 days and more than half of the babies died at home or in the emergency department, indicating that they had been discharged from the postnatal ward. The team concluded that current screening methods are inadequate.

That's roughly 1 in 8 deaths with a condition previously undiagnosed that died at about 14 days. It is not clear that these children could have been saved if they had been diagnosed on time. Only time, and the creation of an adequate registry for CHD, will provide these answers.

This is one front that all CHD organizations, large and small, should be united on - creating an adequate survey of patients, births and deaths related to CHD, so that we can truly begin to understand this series of anomolies.

The Moral Obligation to Give Back

2008-10-06T21:00:00.000-07:00

If you haven't yet subscribed to Adventures of a Funky Heart, (written by an adult CHD survivor and packed with humor and insight), I highly encourage you to peruse the interview he recently conducted with Amy Verstappen, President of the Adult Congenital Heart Association (ACHA) and a survivor of Congenitally Corrected Transposition of the Great Arteries. In her interview with Steve, Amy discusses her "moral obligation" to give back to the CHD community after her personal experiences as an adult survivor. Her personal story is an interesting one, but the action she has taken is nothing short of inspirational.

In the past year, the ACHA has recently joined with several other Congenital Heart Defect organizations to form the National Congenital Heart Coalition. Amy is actively involved in creating new legislation to bring much needed research and attention to CHD issues.

“I am 100% positive that in the long run we will have an integrated, high quality care system for all survivors,” Amy says in the interview. “Our really long term goal is to have a very unified system with research, a registry, a way to quantify outcomes, all the centers talking to each other, sharing information and building knowledge together...”.

Ms. Verstappen is determined to educate parents on the long-term needs of CHD patients. She tells Steve that she “...presented a pilot version of [a new brochure designed by ACHA specifically for parents] to a group of Heart Moms - all leaders of some of the advocacy groups for children - three of them told me that no one had ever told them that their child was going to need this level of care.” Amy goes on to describe some of the questions that parents of children with a heart defect should be asking.

I can tell you, as one of those moms who didn't know or understand the long term implications (I have a child with Transposition of the Greater Arteries who I was told was "fixed!"), that the information provided is valuable and too important not to take a moment to read.

I highly encourage you to take a minute and check out the latest entry at Adventures of a Funky Heart! Not only is it a great personal story of one of the movers and shakers of the CHD community, but it is also a great source of information for parents, teens and adults alike!

Online Discussion on Adult CHD to be held October 2

2008-09-26T20:17:00.000-07:00

Next Thursday, October 2, 2008 at 12 noon (EST) Cleveland Clinic will host an online health chat on Adult Congenital Heart Disease.

During this chat, Dr. Richard Krasuski, Director of Adult Congenital Heart Disease Services and a staff cardiologist in the Section of Clinical Cardiology, Department of Cardiovascular Medicine at Cleveland Clinic Heart and Vascular Institute, explores the treatment options available for adults living with a congenital heart disease. More information on this chat can be found at http://www.clevelandclinic.org/health/ChatReg/Krasuski.html.

Dr. Krasuski's specialty interests include adult congenital heart disease including atrial septal defects, patent foramen ovale, ventricular septal defects, coarctation of the aorta, Ebstein anomaly, Eisenmenger syndrome, transposition of the great arteries, Tetralogy of Fallot and patent ductus arteriosus. He also specializes in pulmonary hypertension, mitral valve disease, cardiac catheterization, transesophageal echocardiography and mitral, aortic and pulmonic valvuloplasty.

Too Close To Home...

2008-09-15T06:19:00.000-07:00

A recent article in The Sun (13 Sept) asserts that a teenage girl with a congenital heart defect died after telling her gym teacher she did not feel well. She was warming up for hockey practice when she asked to stop because of chest pain but, according to classmates, the gym teacher told her to keep going. The classmates then watched her collapse on the pitch.As a heart parent, I can tell you that this is one of my biggest nightmares. I've been unable to let go of the bond with my daughter into another's care (other than family members and the occassional night out while the neighbors come over). Granted, she's only two at this point, but I worry about the day when she will enter public or private school, out from beneath my watchful eye. I've heard so many stories about children with special directives and orders who are overlooked or ignored by their teachers, counselors, coaches, etc. How will I protect my daughter from such a tragedy, yet encourage her toward independence?

Of course, no one can fully protect their child. I understand this. But one can take steps to help ensure a tragic accident such as this one does not occur. The parents of the girl who passed away at hockey practice had made the school aware of Sasha's condition, so they assumed that this information would be passed on to her teachers. Apparently, it was not.

As parents, it is our responsibility to teach our children how to live with their heart condition, to know their bodies and be able to judge accordingly when "enough is enough." The father of the deceased child said, “Sasha had lived with her heart condition since she was born and she knew her own body. Yet even though the school knew she had this problem, they still didn’t listen to her when she said she was unwell.”

Clearly there is something to be learned from this tragic incident. I know I personally take the following from it:

Teach your child about their heart condition. Help them to understand their body.
Make sure your child's caregivers are aware of his or her condition, and the potential stresses that could lead to a serious medical crisis.
Teach your child that it's OK to take breaks when you need to. Even if a coach, friend or other person is pushing you to go farther, your child is the best judge of his/her body. Don't take unnecessary risks.
Talk to gym teachers, coaches and other sport instructors that your child will be working with. Make sure they understand the child's condition and any special considerations and precautions that should be taken.

What do you do to protect your child? How have you taught him to read his body's signs? How do you help her to engage in a healthy, active lifestyle without providing undue stress to her already fragile heart?

Real CHD Survivors on Reality TV!

2008-09-05T22:28:00.000-07:00

GROWN UP “HEART KID” FEATURED ON SEASON FINALE OF LIFETIME TELEVISION’S HIT SERIES “HOW TO LOOK GOOD NAKED"

PHILADELPHIA – SEPTEMBER 04, 2008 – The Adult Congenital Heart Association (ACHA) announced today that congenital heart defect (CHD) survivor, Heather Magee, will be featured on the season finale of Lifetime Television’s hit series, “How To Look Good Naked,” airing September 9 at 10:00 PM EST.

Magee, a survivor of two childhood surgeries to correct a congenital heart defect that left her with only one working ventricle, the most recent of which was performed in October 2007, confronts her body image on the show in the wake of multiple scars, both physical from the incisions, and the mental impact of coping with a congenital heart defect as an adult.

“For almost twenty years I lived under a false sense of security that my heart condition was a childhood problem that was fixed long ago,” said Magee. “When I discovered four years ago that CHD is a lifelong struggle that requires ongoing care, it threw me for a tailspin. Not only did I suffer physically from my condition and the resulting corrective surgery, but mentally as well. I participated in ‘How To Look Good Naked’ both to raise my self esteem after a traumatic time in my life, and also to raise awareness among the millions of adults living with CHD that they must seek treatment for their condition if they aren’t already doing so.”

Approximately 1.8 million adults in the United States are living with congenital heart defects. Most, like Magee, underwent open-heart surgery as an infant or child, and drop out of special congenital heart care, as they believe themselves to be “fixed.” However, recent evidence shows that heart procedures performed on young children may weaken over time, leading to serious health complications as early as young adulthood.

Magee’s appearance on the season finale of “How To Look Good Naked” will do more than just increase awareness of congenital heart defects among the viewing audience, it will help raise the funds necessary to continue the ACHA’s mission. For the first time in the series’ history, the episode also served as a fundraiser. The show featured Magee and other adults living with CHD in a charity fashion show that raised $10,000, which will be divided between the ACHA and the Ahmanson/UCLA Adult Congenital Heart Disease Center (Ahmanson/UCLA ACHD Center), where Magee was treated for her condition.

More about the show can be found at Lifetime's website.

For More Information:

Anna Espe, Development Associate
Adult Congenital Heart Association
215-849-1260
aespe@achaheart.org

The Tallest Kid in the Room

2008-07-30T11:32:00.000-07:00

There's a great new blog out there that I'd love to point our readers to... Adventures of a Funky Heart. The blog is written by Steve, a 41-year old survivor of Tricuspid Atresia. He's allowed us to reprint a portion of a recent entry here. Enjoy, and be sure to check out Adventures of a Funky Heart!

July 28, 2008 by Steve

They always have Highlights for Children. It’s a common staple of any Pediatrician’s office, but it never seemed that they made the magazine available for home delivery. I always wanted a subscription to Highlights, because I enjoyed all the puzzle pages. But that was then. Times have changed, and now I’d rather hae a subscription to a good baseball magazine. Most children aren’t that interested in baseball, so I need to bring my own.

I walk into the doctor’s office and I can feel the eyes boring into my back. I can’t see them, but I know that everyone is looking at me. When someone my age comes into a pediatrician’s office without a child, everyone stares. What’s he doing here? If they are wondering now, just wait until the nurse checks me in and tells me to have a seat.

Usually all of the adult chairs are occupied. It’s impolite to stand in the waiting room – there’s no rule against it, but I’ve never seen it done unless every seat is taken – so I sit in one of the children’s chairs. That’s an adventure unto itself. You sit down as you normally do, but you just keep going down until your bottom hits the chair with a bone jarring THUMP and your knees are level with your eyes. Now I look stupid, so I stretch out my legs. Not only am I blocking the walkway, but now I really look stupid, so I pull my legs back in. Hopefully this won’t be as bad as the time that I had pneumonia: my doctor admitted me to the hospital, and after a 4 hour wait in the ER I learned the only available bed was on the Children’s wing. It was a loooooooooong way from my rear end to the child sized toilet, and I was too far down to stand up! I literally had to roll off the seat and then get to my feet. But there was no room in the inn, you take what you can get, and beggars can’t be choosers.

Until I was 30 years old I saw my local pediatrician for non-emergencies. It works the same way for kids with heart problems. “Adult” Cardiologists can’t deal with us – they are trained to deal with heart attacks, clogged arteries, and all the problems that your heart develops as you age. They usually don’t have experience dealing with Congenital Heart Defects (CHD). A friend of mine – also a Cardiologist – once said that if you chose to specialize in Adult Cardiology, you received about two hours of training in CHDs. Basically just enough to know that they exist. So no matter our age, Cardiac Kids are still patients of a children’s doctor.
But now there’s a new specialty, known as an Adult Congenital Heart Defect doctor. Adult Congenital Defect care is not taught at any medical school (yet); many of the ACHD docs are really Pediatric Cardiologists. Since their patients stay with them practically all their life, these “children’s doctors” found themselves dealing with questions about work, pregnancy, dating, insurance… questions that Adult Cardiologists usually have to answer. And so the field of ACHD Cardiology was born.

You won’t find one on every corner, but ACHD care can be found. Usually, you’ll need to go to a major medical center. I live in rural South Carolina; the ACHD centers in the South include Duke University, Emory University, and the University of Alabama at Birmingham (UAB). Other major centers include The Mayo Clinic, Stanford, the Philadelphia Adult Congenital Heart Center and Children’s Hospital of Boston. There are other clinics, of course, but those are the ones that spring immediately to mind. And now, the waiting rooms have people who are more in my own age range.

I miss the visits to the Pediatric Cardiologist, though. While I’m sitting there trying to get comfortable, absorbing all the stares, the kids don’t pay a bit of attention to me. Kids are kids, they are usually congregated in the play area, getting along famously and having a great time. For once, they aren’t being left behind on the playground – everyone is moving at about the same pace.

The parents are the ones sitting there with the worried look on their face, with good reason. I always hope that one of the parents will speak to me, perhaps ask if my child is sick. If they do, I’ll tell them that no, I’m the one with the heart defect. My parents were in the same boat you were. I’m 41 now, and still going strong. And hopefully someone will come to believe that with good medical care and a little good fortune, their child will do well.

Research Yeilds Answers on Aortic Arch Defect Causes

2008-07-09T08:13:00.000-07:00

By The Pittsburgh Tribune-Review
Tuesday, July 8, 2008

Research led by University of Pittsburgh scientists is the first to describe how two common congenital circulatory problems form, the university announced today.

The team found that a gene called unc45a plays a critical and previously unknown role in the formation of aortic arch vessels. The vessels contribute to several of the body's major arteries and often develop improperly, causing a wide range of vascular defects.

The team also found that arteriovenous malformations, or AVMs, happen when an artery fuses with a vein, diverting blood flow, and result from genetic and physiological factors. Previously doctors had believed its origins were solely genetic.

The research is published in the journal Developmental Biology. Scientists at Georgetown University Medical Center and the National Institutes of Health also participated.

First Hearts United Conference held for HLHS families

2008-06-24T09:43:00.000-07:00

PRLog (Press Release) Bloomington, MN, USA. Jun 23, 2008 -- The non-profit organization Hypoplastic Right Hearts held its first-ever medical and educational conference, Hearts United 2008, in Bloomington, MN June 18-21, 2008. Families with children born with hypoplastic right heart syndrome (HRHS) from around the US and Australia gathered to meet in person for the first time, and some families had never met another child in person with the same diagnosis.

The members of Hypoplastic Right Hearts planned and fundraised for almost 3 years to make this special event happen.

Five years ago when Amanda Adams of Colorado had a baby boy born with a complex, life-threatening congenital heart disease (CHD) where the right ventricle of the heart does not develop properly, she felt all alone as her newborn son faced multiple open heart surgeries to have a chance at survival. Consequently, Adams founded and became president of the online non-profit group, Hypoplastic Right Hearts (www.hypoplasticrighthearts.org). Hypoplastic Right Hearts provides emotional support for parents, primary caregivers, survivors and their spouses, and bereaved parents of children with CHDs that result in a hypoplastic right ventricle. What started with a handful of “heart moms” as a Yahoo! Group in 2003 has now grown into a worldwide membership of over 450 families.

For more information about Hypoplastic Right Hearts group and Hypoplastic Right Heart Syndrome: http://www.hypoplasticrighthearts.org

Long-term Care of CHDs

2008-06-17T07:31:00.000-07:00

As a parent of a child with Transposition of the Greater Arteries (TGA), I will never forget the moment when the surgeon sat down with me after her open-heart surgery and told me "She's fixed." When I asked what I could expect from then on out he told me "She'll be able to live a normal, active life" and "she'd only need a check-up once a year or so." What he didn't tell me is that she was NOT fixed. She will always need to be watched closely. It is likely that she will face complications down the road.

Sure, it's every pediatric cardiac surgeon's dream to tell a parent that a child is "fixed." It doesn't happen often. Some of the more severe defects require many surgeries, none of which are a "fix," but are aimed at extending the lifespan until a fix or alternative treatment can be found. But is it really fair for a surgeon to sugar-coat the truth? No, it isn't.

That's why I was upset when I found out that my daughter's defect is considered severe, requiring life-long care. I had entered into a world where TGA seemed like a minor defect. The truth was like a slap in the face that woke me up from my complacency.

The truth about Congenital Heart Defects is that many DO require life-long care and follow up - not with an adult cardiologist (that is often not specialized in CHD-care), but with a specialist in Adult Congenital Heart Defects. The Adult Congenital Heart Association is working to spread the message, as are many CHD specialists across the world.

For an example, check out today's (17 June) news article from KSPR News in Springfield, Missouri:

Heart Defects need medical attention through adulthood
By KSPR News (visit the link for video footage)

Fifty years ago babies born with congenital heart defects weren't expected to live into adulthood. But thanks to advances in medicine, most babies with heart defects now live long, full lives.

"What it's called is tetralogy of fallot. It's one of the most common occurring complex defects."

Kyra's heart had four abnormalities. The pulmonic valve was narrowed, and there was a hole in the septum, or wall between the right and left ventricles. Also, a main artery was in the wrong place. These issues caused her right ventricle to get thick because of all the extra pumping it had to do. At age 4, Kyra had surgery. She was considered cured.

"Then I started developing symptoms. Shortness of breath, electrical conduction problems, arrhythmias."

It turns out she needed another valve replacement. The repaired valve started to leak. Dr. Keith Oken says Kyra was a victim of a common misconception.

"Which is that she was cured with the surgery she had. That is rarely the case."

Kyra needs continuous, life-time care. But there are not many cardiologists trained to manage cases like hers. That's because until recently most people with congenital heart defects did not survive into adulthood. So to make sure Kyra stays healthy, she sees her regular doctor and experts at mayo clinic. Plus she's doing whatever she can to keep her heart strong...

Doctor Oken says people with adult congenital heart defects need to continue seeing their doctors... And to see a heart defect specialist.

Stereoscopic Glasses May Aid Beating-Heart Surgery

2008-06-13T10:59:00.000-07:00

Source: iTNews, 10 June 2008

In a recent study, the three-dimensional glasses have been used in a successful operation on pigs with a common form of congenital heart disease. The newly-tested stereoscopic glasses enable depth perception by splitting computer images in two, and cocking them at slightly different angles to provide surgeons with ultrasound images of the beating heart as a hologram.

Researchers expect that clinical trials of beating-heart surgery with the patching system could begin in children with ASDs this year.

Social Security Benefits for Adults with CHD

2008-06-05T07:45:00.000-07:00

Source: Cavey|Barrott Attorneys at Law Blog

Social Security Disability Benefits are paid for congenital heart disease. The Social Security Administration uses Listing 4.06 to evaluate symptomatic congenital heart disease. You show the results of specific medical testing and meet very stringent medical findings to qualify for listing.

More often than not, Social Security disability benefits for congenital heart disease will be awarded based on vocational criteria.

Growing up with CHD, Part 3

2008-05-22T14:00:00.000-07:00

Growing up with CHD: A Mother-Daughter chat

By Sarah Clark and Connie Walker

Hey everyone! I apologize for the delay on this post. this week has been a bit crazy in the Clark and Walker households, with me and my husband closing on our first house next friday and my folks packing up for a family visit in Virginia. Thanks again for your patience! After the draining experience that writing (and probably reading!) the last week's column turned out to be, we're going to dial things back a notch. Mom and I were talking on the phone the night before my second column posted, and liked my idea of co-writing the final article in this series. In fact, we're going to change things up a bit, and this article will be written as a interview with me asking and Mom answering questions about how my CHD impacted our family, what we're really proud of, and what, if we had it to again, we might do differently or wish someone had told us.

Also, what's next for my involvement with the CHD blog? Well, As you see, Kim has bestowed on me the honor of co-authoring this blog, and while she's certainly more of an expert on raising a kid with CHD, I'm looking forward to adding my two cents from the other side of the fence, so to speak. After my life settles back down from our move and a few work commitments I'd kind of like to put my librarian hat on for an article or two and share some tips on doing medical research. When I was young the issue for average folks was finding any information at all. Now thanks to the Internet, we're all drowning in data on any medical subject you can think of, of quality varying wildly from expert to quackery. I'll help you figure out where to search, what terms to use, how to effectively use your local public and university libraries, and how to evaluate what you find and discuss it intelligently and assertively with your kid's medical team.

Last, I want to share my contact info and mention a resource I've found useful. As I mentioned, I didn't really have any CHD role models as I grew up, came to terms with some very strange and heavy stuff, and became the productive and upstanding grownup (?) that I am today. Again thanks to the Internet, that no longer needs to be the case no matter where you live. While I spend far more time on Lifehacker, LOLcats and Writing-oriented blogs and forums than in the heart defect corner of the net, I'm a proud and slightly goofy member of ACHA-this association lobbies for the needs and interests of adults with congenital heart defects, sponsors research and education in ACHD issues, hosts a bi-annual convention for adults with CHDs, family, friends, and physicians, and provides a message board where teens and adults with weird plumbing can share their victories, support each other through tough times, or (mostly) be silly! You can drop me a private message there (I'm on as OKLibrarian), or simply zap me an email at oklibrarianATgmail.com. If you're looking for the parental perspective, you can reach my mom and dad at connie52ATcox.net and cwalker71ATcox.net respectively. (Thanks again for volunteering to be spammed, Mom & Dad!)

Now for part 3:

Sarah: I know I've said this before, but why not let the whole internet know? I got very lucky to have you and Dad as parents. As I've mentioned, you helped me and Daniel survive some very...interesting times during our childhood, and we've somehow managed to both become mature, upstanding adults with spouses, mortgages and careers. What do you think were the most important things you and/or dad did that helped us get to adulthood with good mental and physical health?

Connie: We loved you. That simple--and that complicated. I'd like to believe it would have been the same regardless of health concerns or birth order, but who can say for sure. Life happens as it happens.

Whatever was happening in our lives, it was important to me that home meant safety--a retreat and refuge. We valued you two for who you were--not who we wanted you to be. We paid close attention to your interests and talents, and did our best to nurture them in every way we could. We also did our best to turn every perceived "failure" into a learning experience. By the time you were born, we had learned that resilience was the most important tool for a successful life. We made it our highest responsibility to make sure both of you had that tool!

Sarah: On the flip side--if you had it to do all over again, is there anything you would have done differently, or wished you'd known about in advance about raising a kid with CHD, or just parenting in general? (let's take not bringing me to see ET as read. *smirk*)

Mom: You've been very kind not to mention my worry-wart nature. It's my lifelong "defect" (can you tell I take strong exception to that word and what it implies...). When that worrying nature was applied to my deepest love--my family--I probably added unnecessary burdens to your lives. I wish I could have been braver. But as I've told you before, it could have been much worse! Without sharing my fears with you & Daniel, and forcing you both to prove to me you would be smart and safe, I would probably just have locked you in the house forever. It is a generalized fear...applied in its turn to my beautiful, first born, "blue" baby, crossing the street alone, riding the bike to a friend's house, dating, driving, calls from a deserted train station in Rome at 2 a.m. on Christmas Eve...you know, silly stuff like that. (And on the topic of ET, if it's still traumatic, I'll be happy to make you another ET costume and let you parade up and down the neighborhood, like we did all those years ago!)

(Note: The author would like to commend her Mom for her very savvy desensitization of her daughter's ET-Phobia, and also remind her that she had specifically requested a phone call on Christmas Eve, and it was the only phone booth available by the time we left midnight mass @ the Vatican! The only people around anyway were a policeman, my backpacking buddies and a very polite transvestite panhandler...)

Sarah: My younger brother Daniel is the coolest guy on the planet, and hasn't gotten nearly enough attention in the first two parts of our story. Among other gifts, he has more musical talent in his little toe than I will ever hope to possess, and plays keyboards part-time with local jazz and funk bands in addition to his career as an Industrial Engineer. However, he and I are very different people-he is a logical, laid-back guy, quiet where I am outgoing, mellow where I am melodramatic. How did you handle raising two children, both very gifted in their own ways but with two very different personalities and needs, and how did you try to make sure that your "normal" kid didn't feel like he was shortchanged?

Mom: See answer to question # 1! Truthfully, he probably did feel shortchanged from time to time. Probably you did too. Sibling rivalry is what it is. But disrespect, in action or word, was not allowed between the two of you (at least not when I knew about it). Do you remember when one of you would say, "that's not fair...you love ____ more than you love me!" I always answered "yep, you must be right". That always shut off the pity party, because you both knew that was silly talk. We valued you both, and expected you to value each other. That mutual love, respect, and support of each other is still my strongest desire for the two of you. Different is good!

Sarah: I often tell friends that I had a idyllic 80's sitcom suburban childhood "with a few twists"- Often I don't think they believe me until they've seen enough of us all interacting to realize it isn't some weird passive-aggressive act! How did you and Dad find a balance between acknowledging the medical challenges I (and later Dad) had to deal with growing up with giving me and Daniel as "normal" and stable a childhood as possible? Also, do you think everything we went through made you and dad a stronger couple, and us a stronger family?

Mom: Well, your dad and I are at least as different from each other as you and Daniel are! I think it is extremely important to have both parents involved in a child's life. I know it isn't always possible. In fact, for a good portion of your childhood, dad was too sick to be as actively involved as he had dreamed of being. It took all of his energy just to keep on working, so we would be provided for. That makes us sad when we look back on the childrearing years. But those kinds of regrets don't really serve any purpose except to keep people from making the most of the circumstances they find themselves in. We just did the best we could with each day that was given to us.

To answer your question, reference my overprotective, worrying nature. One day, after listening to my many plans for keeping you safe from any danger, harm, hurt or substandard educational experiences, your dad, in exasperation, said, "Connie, we don't live in Mr. Rogers' Neighborhood!" He had hit the nail on the head. That was exactly where I WANTED to live. And I told him so. But it also made me laugh at myself. I knew you (and Daniel) couldn't live there forever, even if we could afford a house in the Neighborhood of Make-Believe. And so it went, with every "crisis"--potential, undeniable, or conjured up--we both spoke up about our fears, opinions and reasons, communicated (sometimes loudly) and came up with a solution we could both live with. The one thing we always knew was that we both loved both of you, and each other, very much.

Sarah: I'm not a parent yet- some days I barely have it together enough to take care of our cat! :-) Because of that, I'm guessing that I'm missing some stuff you think is important for other parents to keep in mind. Is there anything you'd like to say that I didn't ask you about?

Mom: Becoming active in a support group was probably the one thing we did that saved our marriage, family, and perhaps even your life. Lifeline, the support group at Children's Hospital in Oklahoma City, was the saving grace when you were first born. I dealt with guilt (what had I done wrong), anger (what kind of God would let these things happen to innocent children), fear (if she doesn't live, I can not bear to live either), and overwhelming love (surely everyone knows this is the most beautiful, marvelous child who was ever born). I worried about every sneeze, about helping you gain enough weight for the surgery, about how you were progressing compared to others your age. Some of that was heart, and some of that was first baby. The worries were real. But the focus of Lifeline (named by a family who called their child's scar her lifeline) was hope, support, education and friendship. I never thought of you, or any of those other wonderful children we grew to love, as defective in any way. You all were perfectly, wonderfully made.

Your correction eventually had an excellent result, but there were problems from the post surgery complications that we had to deal with. It is possible we might have defined you in terms of those problems, except for what I call "God's beautiful gift wrapped in a very ugly package". You had a respiratory arrest after the correction at 18 months. It was my blinding light on the Damascus road. All my anger at God about why--why you--why precious little children--why child abuse--all those hard things I saw at Children's Hospital--fell away when I saw them holding the paddles over your tiny, wired body. I knew in that instant that you never really belonged to me. You belonged to God. Regardless of my plans, actions or thoughts, I had no power of life or death. You were in my heart for as long as I had you, and for as long as I lived. My precious privilege, but not my possession. My child, but also God's child. And so, that very minute, I repented of that anger. I gave you back to God, and starting praying for wisdom and courage to raise you and support you in the life YOU were meant to lead. By the time Daniel came along, I knew what to do. I gave him back the day he was born! And I prayed for wisdom and courage to raise him and support him in the life he was meant to lead.

That is my advice to parents, CHD or any other. The only power you have is the power of love. See your children as what they truly are--God's children. Pray for wisdom and courage to raise them and support them in the lives they are meant to lead. It is that simple--and that complicated.

~~~~~~~~~~~~

Thanks Mom, and I don't think I can really improve on her ending.

So, Is there a moral to my mini-autobiography? I don't know. You and your kids will have to visit and revisit this issue occasionally through their lives, no matter how "perfect" their outcome is. Aside from less than ideal physical stamina, and a few very minor hearing and motor control glitches created by my brain damage, I'm normal in pretty much every way you could define. And yet, every so often I've had to mull over these issues in my life, come to understand them in a deeper, more mature way, and make peace with them for another few years. It last happened around the time Kevin and I got married, this time it seems to be related to turning 30 and buying our first house, and it'll probably happen when/if we have kids and again when I retire. I suspect it's the same for anybody who's had traumatic experiences in their lives, i.e. 100% of the human population.

I started writing these posts for those of you, like Kim, whose kids have passed the crisis, and who are wondering "what now?" about things like self image and dating and all the soft psychological stuff that you can't really ask your cardiologist about. But I have to be honest and say that I was helped at least as much as anyone here by telling my story. Without realizing I was doing it, I gave myself permission to let go of a lot of my lingering guilt about being born as I was, yanking out that stupid vent tube when I was 18 months old, panicking that night when I was standing by the telephone, and all the other big regrets of my early life. I can't speak for all people with CHD any more than I can speak for all redheaded short chubby Librarians who watch too much Food Network. But in my case, having parents who encouraged us to share our feelings even when they were ugly or scary, who taught us resilience, and who encouraged us to achieve as much as our talents allowed helped me and my brother become strong, successful adults who work every day in our own ways to make the world better. And that, so I'm told, is the goal of every parent. I hope that hearing my story and Mom's will help in some way as you parent your kids. If you'd like to know more, we're no more than an email or comment away.

Thanks for reading,
Sarah

US Cardiac Specialists to Assist in China

2008-05-22T11:20:00.000-07:00

Team Of Top US Cardiac Specialists To Perform Critical Operations On Children In China
Medical News Today

16 May 2008. Heart disease is the world's most common birth defect, affecting one in every 100 children. Without treatment, one third of these children die before their first birthday. In developed countries, children are typically diagnosed and treated at birth. Children's HeartLink, an international medical nonprofit, is reaching out and helping build sustainable pediatric cardiac programs in the underserved regions of the world, to help more children have the same opportunity. May 17 - 24, Children's HeartLink will be sending a team of volunteers from New York hospitals on a cardiac medical mission to Changchun, China, to provide advanced training and participate in lifesaving operations on needy children.

Last September at the Clinton Global Initiative in New York, the Bracco/Children's HeartLink Initiative was recognized as it announced the commitment's estimated total value of $1,000,000. The partnership will provide life-saving training, equipment and direct patient funding to Jilin Heart Hospital, in Changchun, Jilin Province, China -- reaching more than 12,000 children in the next 3 years.

The project will involve the training of medical personnel at the Jilin Hospital in China. The Bracco/Children's HeartLink Initiative will reach an estimated 4,000 children a year with emphasis on improving the quality of care. "In China, congenital heart disease is the primary cause of death of infants. This Initiative has the ability to impact thousands of lives" said Elizabeth Bickel, President of Children's HeartLink.

More info...

Those of us in the US are often so focused on how under-served our children are as well as the lack of awareness that it's often easy to forget how very lucky we are to have the facilities and care available, even if it is at a significant, life-changing cost... many in other countries do not. We're looking forward to seeing the results of this significant effort undertaken by Children's HeartLink!

$1 Million Gift to Support Earlier CHD Detection

2008-05-16T14:18:00.000-07:00

Washington, DC (PRWEB ) May 15, 2008 -- The Elsie & Marvin Dekelboum Family Foundation has announced a gift of $1 million to Children’s National Medical Center. The gift will allow the Children’s National Heart Institute to launch a Congenital Heart Defect Screening Study. Children’s National will name a three-bed bay in the new Cardiac Intensive Care Unit in honor of the Elsie & Marvin Dekelboum Family Foundation.

The heart defect screening study will focus on the effectiveness of an inexpensive device called a pulse oxymeter that could help identify more than 80 percent of life-threatening congenital heart defects. If initial findings are validated, the Dekelboum gift will enable Children’s National to promote its use in hospitals across the country and around the world – improving early detection and health outcomes for children everywhere.

An Award

2008-05-09T19:37:00.001-07:00

A very special thanks to Emily, author of Lovely and Amazing and Gabriel's Heart for presenting this site with the Arte y Pico award for its creativity, interesting design and content. Check out my personal blog if you're interested in seeing who I'm recommending for the Arte y Pico award, as well as how to participate.

Thanks to Emily for her support, great blogging and wit! It's amazing who you meet in cyberspace...

Growing up with CHD: Part 2

2008-05-08T09:58:00.001-07:00

Part 2: And now the Bad (or at least challenging) Stuff

By Sarah Clark

First, my apologies for the length—as somebody once wrote, if I'd had more time to edit I would have made this piece shorter. Second, you're going to get tired of hearing this, but growing up with CHD was a relative non-issue, especially when I compare myself to people who suffered various types of abuse or neglect. However, that's not to say CHD wasn't an issue at all.

The first 10 years of my life were hard. About 3 years after my medical drama, my dad started having seizures, and it took several brain surgeries, countless drugs, and ten years of searching to find the cause and get them under control. (And he worked full time during all that!) So much happened to my family in my early life that it's hard to say what caused a given problem, and what just made it worse. However, the ones I'm going to focus on the issues that were there before my Dad got sick. I'm also glazing over some of the obvious fears you may have for your kids like body image and gym class traumas, because their effects aren't that much different or worse than any other kid's psychic bumps and bruises, and are treated in the same way. I'm a deep thinker, so I'd rather focus on the Deep stuff I faced, and that your kids might face as well.

Guilt:

The summer after my 3rd grade year, Mom and Dad went to UCLA for his big brain surgery. We shuttled between several relatives and family friends back in Oklahoma, who each gave us varying amounts of attention and affection. I could probably write a book about the experiences of that summer, but for the purposes of this article, I'm going to stick to the "Blacks". The Blacks were one of a few families my folks had kept in touch with from the CHD days. Their oldest, "Amy", had been a couple years older than me, and hers was the first funeral I attended (about 5 years prior to the summer we spent with the Blacks). She looked like something from a fairy tale with her blue eyes and blond curls. We'd played together some, but really all I remembered was that she was pale and kind of bossy. The Blacks had two younger kids whose ages roughly corresponded to me and my little brother Daniel, so we all got along well, and spent the several weeks we stayed there romping in the backyard and doing Kid Stuff. The only weird thing was the staircase.

The wall alongside the stairs to the second floor was a shrine to Amy. Every morning when I ran down to breakfast, I was torn between averting my eyes from and gazing in fascination at the dozens of photos, certificates, and plaques that lined the walls. Somehow I felt ashamed looking at them, as if I had no right to feel a slight pang of envy for the cute girl who'd gotten to be in front of so many TV cameras and meet so many interesting people in her short life. One afternoon I came back to the house when I got pooped from too much racing on my bike. I came in the back door and grabbed the first book I came across (I left books in my wake like Hansel and Gretel left breadcrumbs), and flopped down in Mr. Black's squashy armchair to read for a bit. I heard Mrs. Black's voice from the kitchen, and realized she was on the phone. Being 9 and nosy, I did the best I could to listen in. I can only assume she didn't hear me enter.

"She'd be thirteen soon…I know God wanted her because she was so special. She's probably the prettiest angel in His garden…," Mrs. Black continued, sharing her dreams for her late daughter to the person on the other end of the line. I sat in the chair, unseen, wanting to throw up. Maybe it was my carefully suppressed fear that I'd never see Dad again, or simply the fact that I was getting older, but for the first time in my life, her overheard words caused the full implications of the eternal question "Why?" to hit me like a ton of bricks. My mind whirled with rage at God, confusion at Mrs. Black's comments, and a strange dark tug at my soul that I eventually recognized as guilt. Did this mean that I was more special than Amy—which made no sense—she was angelic (when grownups were looking) even when she was alive. Or did it mean that I wasn't special enough? Had I done something bad to be born sick, or worse--was my survival some sort of bargain that made Dad sick? Had I made Amy die by praying to God to get back at her for pulling my hair? Her defect hadn't been that much worse than mine--why save a nearsighted geeky clutz with mouse-brown hair and no social skills? Why me and not Amy?

Nearly 25 years later I still have no clue on that one. If somebody here figures that one out, please let me know. It's certainly one of the strongest arguments I've come across for the non-existence of God.

Anxiety:

I've had panic attacks, generalized anxiety, and phobias of various types and degrees pretty much since the day I woke up from my mustard procedure and the ensuing complications. Call it PTSD, brain damage, damaged seratonin receptors from spending so much time on the heart-lung machine--ultimately the cause doesn't matter. Store closings, unfamiliar doctors, elevators, Bs on report cards, any of those things could and did send me into panic attacks at various points in my life. Think twice before you put ET in the DVD player for the first time—I was 4 when I saw that in theaters and I went into a full-tilt inconsolable shrieking meltdown when ET "died". In fact, the only thing I seriously regret in my life occurred because at a moment when someone I loved needed my help desperately, I had a panic attack.

It was a week or two before Christmas. Mom was out for a "meeting with Santa's elves", and Dad was reading us a bedtime story in my brother's bedroom. He finished the story, closed the book, and stood up, preparing to tell me to brush my teeth and go to my bedroom. Then his voice trailed off, and he got a real funny look in his eyes, like he was staring 100 miles into the distance. Then he collapsed into convulsions, and knocked himself unconscious on Daniel's toy piano. Daniel (who was no more than a year old) started screaming, and I swung into action. So what if I was 5? I knew what to do, 799-HELP, I had the phone in my hand, I started dialing—and I froze.

All of a sudden I couldn't breathe, my heart was pounding a million miles a minute, and I started thinking a million different things—what if Dad was dead, and I was supposed to be doing CPR? Would the paramedics be mad if I called and he was dead and I'd wasted their time? What if dad woke up, and then the paramedics would really be mad because it wasn't a real emergency? Would they say "aw, you're just a kid" and hang up? No matter how I tried, I couldn't dial that phone. I hung up and crawled into bed weeping until Dad came to from his first seizure. Dad, of course, long ago told me there was nothing to forgive. I hope one day I can figure out how to be that generous to my younger self.

Since that night 25 years ago when I learned what my panic could make me do (or not do), I've fought a ruthless pitched battle against my terror in all its forms. It's been a foe more formidable than my circulation, by far. It's not just the sweaty palms and the 3 AM catastrophizing over whether I CC'd the right people on an email or if I paid the light bill. The person I loved most in the world needed me, and I failed him. I've come to terms with that (at least intellectually), but it will always gnaw at me, and give my anxiety the most potent ammunition possible when I try to fight it down. I have beaten it down to a dull murmur, but I will always have to be on the defensive--it often sneaks up when I least expect it.

Perfectionism:

Guilt + Anxiety=Perfectionism. Good enough is never good enough for me—I had a serious depression in my early teens and one of the greatest things that fed it was that I simply lacked the energy or motivation to do homework because I was brooding over my "deformed" body, my sick father, or the heavy existential questions mentioned above-- or hiding from that brooding via compulsive reading. That of course lowered my grades, made me feel worse about myself, and the cycle continued down for several years before I pulled myself up through therapy and sheer force of will. The perfectionism remains though—it took me 24 hours after the greatest physical success of my life, climbing the first third of the Great Wall of China at Badaling, to stop berating myself for not training hard enough to conquer the whole thing and to take pride in what I *had* accomplished. I've mellowed a lot since my "emo" teen years and become more balanced as I've matured. I've learned to use that impulse for good--it's certainly helped me out in my career.

The Kid Thing:

"Sarah, It would be a very good idea if you decided not to have children. Pregnancy could be very dangerous for you."

That was NOT the reaction I'd expected when I told Dr. Razook about my first serious boyfriend! I'd expected him to grin, remind me he'd told me so when I'd worried over my scars making me unattractive in previous checkups, and generally play the proud if protective surrogate dad he'd been through my childhood. Instead he asked to talk to me without mom in the room, asked a few delicate questions about what "physical contact" we'd done ("Peter" was president of the Bible Club and Math team and I was barely 16—we were both too nerdy and too scared of eternal retribution to try very much), and then Dr. Razook hit me with that bombshell. Peter and I parted the following year, but I will always remember how he came right over that night when I called, and held me as I cried, telling me that he still thought I was just as beautiful as before. Peter had his faults, but I've held every man I've dated to that standard when I've told them my medical history and its implications. I've been married for 6 years to a man who passed that test with flying colors.

Everyone's situation is different. People with TGA can and do decide to have children, and 15 years on I realize Dr. Razook's blanket disapproval was probably mostly his extra-cautious nature, and partially his impulse to slow down a teenager who was in too big a rush to grow up. However, I've read the studies, talked to people who've had both good and bad outcomes, and I came to the same decision. I feel it would be unethical to knowingly put a child at increased genetic risk of a CHD, and considering that a pregnancy might well complicate my uncomplicated outcome, I will NOT subject my child to growing up with a chronically ill parent if at all possible. Your kids' mileage may vary. Remember that "anxiety" stuff above? I'm a devout believer in Murphy's law.

Being a "miracle"

I'm sure you say it all the time—you've probably said it to your kids, or your friends, or had others say it to you. "You're a miracle". "Her recovery was miraculous." "God blessed us with a miracle". In the sense that at least one event happened to me that could not then be fully explained by medical science, I am a "miracle". I learned the story of my early life, surgery, and (at least metaphorical) rebirth as a wee child, right alongside Cinderella, Snow White, and Sleeping Beauty. My defect was never something to be ashamed of, and my parents told me to wear my scars proudly. From early on I knew I was destined for Great Things—God had saved my life, had He not? (I was still a little young yet to ponder either the "Amy Counter-argument", or wonder Who had been in charge of creating the situation where my life needed saving in the first place)

In addition to having a rather more dramatic origin story than most, I was intelligent. Scary, precocious, read off the menu at the restaurant when I was 2 intelligent. (apparently when the waitress complimented me on my literacy, my granny whipped up my dress to show her my scars, to my parents' horror…). Between those two things, every adult in my life was CONVINCED that I was going to do something amazing with my life—and from my earliest days through 3^rd grade I complied. When maturity, hormones, and the events of the first decade of my life finally slammed into me as mentioned above, not only did I feel depressed for those reasons, my despair deepened because I wasn't living up to what I was Supposed To Do with my life, the mysterious, still-unknown reason I had been saved and made a Miracle.

When I clawed my way out of my funk in my mid-teens, I set myself to figure out what Great Work I had to accomplish to pay back the life debt of my miracle. I put myself under a lot of pressure and agony, and it was definitely a big part of the perfectionism. In recent years I finally got mature enough to throw up my hands and essentially say "God, if you exist and I have an outstanding bar tab, you're going to have to send me the bill via some sort of signal I'll understand. Otherwise I'm just going to muddle through the best I can, and try my best not to feel guilty over that." I've yet to get a bill, so I assume I'm doing fine.

As for the "miracle" thing? As a kid, I wore it with uncomfortable pride, like an Easter dress that was too itchy with starch and made me want to change back into anonymous jeans and a t-shirt. As a teen and young adult I hid from the descriptor or rejected it outright. Now? I don't even know if I still believe I'm a miracle (sorry mom), much less what I think about what that implies. I really am uncomfortable with and to an extent resent all the baggage that has come with being slapped with that 7-letter albatross. Then again, one doesn't get to pick and choose the good and bad in life. If not for the "Miracle" label…Would I be this determined, or this intelligent? Would I be wasting away in a job I hated instead of doing something I love? Would I be living such an (over)examined life?

The point to all of this:

I hope I haven't scared you too much, or convinced you that your children are doomed to a life of brooding and anxiety. Remember Part 1: I am so strong, and lead such a wonderful life in large part BECAUSE I faced these demons at an early age and came out whole on the other side. I don't mean to sound like a Pollyanna, and it is very likely that your children will need your help and possibly professional help in answering the very adult questions and fears that surround their very existence. Fortunately I had that. My mom practiced desensitization therapy long before it was in the books by gradually and carefully exposing me to my phobic triggers until they no longer set me off. Dad is a living example of how one can have a chronic medical issue and still live a productive and fulfilling life. My parents considered no topic taboo, and helped me talk through a lot of my early struggles. At crucial moments they got me to therapists who helped me sort out my thoughts and fears. My parents are the real heroes of this story—in my most honest moments I know that I'm afraid to have children because I simply could not do what they did—and what you do now. And while I feel somewhat unqualified to suggest things to you all, simply because I'm not a parent of a child with a heart defect, I'd like to wrap up this series next week with a list of Dos and Don'ts for raising a kid with a CHD. Hopefully I can talk Mom into co-writing…

Important: Digitek Recall

2008-05-06T21:19:00.001-07:00

Though the recall happened on April 25, I talked to a parent today who did not know about this, so felt it was important to post.

If you or your child take Digitek, please see the recall on the FDA website. Please spread the word to anyone who takes or may take this medication, as it seems that there has been little publicity, and many pharmacies are not aware of, or have been ignoring the recall.

"The voluntary all lot recall is due to the possibility that tablets with double the appropriate thickness may have been commercially released. These tablets may contain twice the approved level of active ingredient than it appropriate.

Digitek® is used to treat heart failure and abnormal heart rhythms. The existence of double strength tablets poses a risk of digitalis toxicity in patients with renal failure. Digitalis toxicity can cause nausea, vomiting, dizziness, low blood pressure, cardiac instability and bradycardia. Death can also result from excessive Digitalis intake. Several reports of illnesses and injuries have been received."

I read a blog today by one family (if I get permission, I'll add the link) that had been affected by the recall - their daughter was taking the double-dosage tablets. They posted the following photo showing the difference between the normal size (in this photo, Digoxin, the replacement for the recall) versus the recalled Digitek, which is quite larger.

Send Flowers to Mom & Help Raise Funds for Research!

2008-05-06T11:27:00.000-07:00

LINCOLNSHIRE, Ill., May 5 /PRNewswire/

The Children's Heart Foundation today announced a new partnership with ProFlowers(R) -- the online fresh flower marketplace -- just in time for Mother's Day! Shoppers can visit http://www.proflowers.com/CHF and choose from a variety of beautiful, fresh-from-the-field flower arrangements. All year long, whenever flowers are purchased through the CHF page on ProFlowers, ten dollars from each purchase will benefit The Children's Heart Foundation (check out their new website!).

"Sending flowers to the mothers and grandmothers in your life is a great way to show your appreciation and celebrate their love -- and now it also can help raise much-needed funding to find better treatments and, hopefully someday a cure, for congenital heart defects" said William Foley, Executive Director, The Children's Heart Foundation.

The Children's Heart Foundation is the country's leading organization solely committed to congenital heart defect (CHD) research funding and is comprised of parents, family members and friends of those affected by a congenital heart defect. The goal of The Children's Heart Foundation is to increase awareness, support the recently diagnosed through educational materials and continue funding the most promising research to find better treatments.

Growing up with a CHD: The good, the bad, and the…interesting

2008-04-30T18:12:00.000-07:00

By Sarah Clark

Part 1: First, the good news

I’m probably not very different from some of the younger parents who follow this blog. I’m a 31 year old living in Northeast Oklahoma with my husband of 6 years and our cat, Tawnya. We’re moving into our first house in about a month, and we’re looking forward to filling up our new bookshelves, setting up a whole-house wireless network, and starting a proper vegetable garden. I’m a librarian at a local university, and I spend my days keeping up with overdue notices, teaching information literacy classes, and helping our online students get the research help they need for their classes. I was born with Transposition of the Great Arteries, VSD, and PDA, all corrected by the time I was 18 months old. My husband Kevin is a software developer. We walk a few times a week (when we’re being good), and attempt to eat a reasonably healthy diet. We hang out with friends, spend too much time online, and could really stand to clean out the bedroom closet this weekend. All in all, we’re your typical middle class DINK couple, though perhaps a little geekier than most.

Just in case you missed the point of this recitation of our nice little life in suburbia, let me make it clear: I lead a normal, happy, reasonably healthy life, and as far as I can tell, my life is pretty typical of adults with my defect (the symptom-free survival rate at 30 years post-correction is over 80%, and most of us had Mustards or Sennings instead of the new and improved arterial switch procedure). I’ve had no physical complications to speak of, and I’ve accomplished most of the modest physical goals I’ve set for myself. My CHD is merely one of a laundry list of things that are notable about my life. I’ve led a generally happy life (with a few bumps in the road I’ll hit in part two), I’ve graduated bachelor’s and master’s programs with excellent grades, I studied in Scotland during my sophomore year of college, and I’m the first TGA that I know of to climb (a very small chunk of) the Great Wall of China. The most important thing I want to share is that most of those things didn’t happen in spite of my defect—in a very real way they happened because of it. Let me explain with a brief list of the benefits of being born with a congenital heart defect.

1. Immortality? What immortality? 24 hours after my mustard procedure, I managed to disconnect myself from the ventilator, coded, spent the next month in a drug-induced coma, and was expected to wake up with major brain damage. At two years old it looked like I might be developing pulmonary hypertension. Pretty much every CHD kid I knew well before the age of 4 died of their heart defect—I believe I went to my first funeral when I was about 5. I never believed I was immortal or untouchable. That’s probably a big part of the reason I’ve never touched drugs or nicotine, drink no more than one or two cups of coffee a week, and consider a glass of wine with dinner a wild night on the town. (Well, that and I'm a nerd who grew up in the 80s…)

2. Carpe Diem: I don’t know my life expectancy. Some of the first patients to have surgically corrected heart defects are now in their 80s and the picture of health. Then again, there are people younger than me with my defect who are in heart failure and on disability. All those cheeseburgers I ate on the run in my dot-com days (and am still working off) could catch up with me tomorrow (or never). For that matter, I could get hit by a bus. I save as though I’m going to be one of the first TGA centenarians (which is the plan), but I don’t put off my dreams. If I find myself in a crappy job or relationship, I start working to get out of it. If I want to see the world I save up for a plane ticket and go. If I want the triple cheese decadence special, I eat it with very little guilt (this one’s a double-edged sword, though…) In a nutshell, everyone’s life is too short to put up with nonsense, but I can’t assume I’ll have as many “later”s as other people. And if I make it to that 100th birthday, I’ll have a LOT of cool stories to tell at my party.

3. Overachiever and proud of it: I play hard, and I work hard. I always have to have some sort of goal or project going, and while I’m no prodigy, I’ve accomplished a good bit in my first 30 years. I keep striving for the next accomplishment or the next refinement, which is a good thing in general but is another one of those double-edged swords. (again, see part two for the dark side of this) As a wee kid my cardiologist Dr. Razook told me that if I set my mind to it, I could accomplish anything. I was young/naïve enough to take him at his word, and for the most part he was right.

4. I don’t wait to tell people how I feel about them. Good or bad.

5. I feel an obligation to use my talents to leave the planet better off than I found it.

6. I don’t particularly care what other people think of my choices. I do a job most people would see as the height of boredom. I ignore people who tell me I need to watch some soap opera or “fix” some sartorial flaw of my husband’s. I march to my own drummer—in childhood because I didn’t know how to fit in as a bespectacled hyper-intelligent neurotic wimp, but later on because I didn’t particularly care to fit in. As I’ve gotten older, I’m more willing to wear the right outfit or schmooze with the right people to get to my goals, but the subterfuge is still only skin deep. And I don’t hide my brains for anyone.

To boil this thousand word description of the upside of TGA to its essence, I long ago realized that life was too short to put up with bullshit. I’m driven to make the most of my life, and I also care a lot about using my talents to help others improve their own lives. For the most part these are good things, and I wouldn’t change that for anything. However, that drive, and the drive of other adult CHD survivors that I know of, is powered by a decreasing but eternally present fuel of anxiety, perfectionism, survivor’s guilt, and by memories of the long-dead friends, acquaintances, and playdates that were no less deserving of the healthy, normal, and seemingly improbable life I enjoy today. Not only did I live while other children died, I live *because* other children died, and provided the knowledge needed to save the life of a chubby neurotic drama queen.

For better and worse, all of my life’s experiences have been marked by that essential truth. I don’t know whether that will be true for your child—but all I can do is share my experiences, good and bad, and hope that you can find some use for them in parenting your child. But remember—I still wouldn't change a thing.

Next week: The Bad.

Blog Note - Sarah is one of many people who I have befriended online from this blog. I hope you enjoy her perspective and experience as much as I do! Sarah has kindly agreed to provide a three-part series for LearnAboutCHD, and we can't wait for the next installment.

If you have a story, perspective or news item you would like to share, please email learnaboutchd@blogspot.com. The more we share, the more we learn and the more we can accomplish!

New Guidelines Urge Heart Tests Before Taking ADHD Drugs

2008-04-29T07:17:00.000-07:00

Excerpts from article by RON WINSLOW
Wall Street Journal
April 22, 2008; Page D1

Children diagnosed with attention deficit and hyperactivity disorder should have a thorough heart work-up, including an electrocardiogram, before taking stimulants such as Ritalin to treat the condition, according to a new recommendation by the American Heart Association.

The advice marks the first time a medical-guidelines body in the U.S. has urged wide use of an electrocardiogram, which charts electrical activity in the heart, to screen a presumed healthy population for abnormalities.

But there is debate among experts about the value of using the test to screen such a large pool of patients to detect a rare condition. The hope is that such a test -- in combination with a comprehensive checkup -- will help to avoid the rare cases of sudden cardiac arrest that have been linked to the widely used medicines.

AN ADHD CARDIAC CHECKLIST

A child diagnosed with ADHD should get a thorough heart checkup, including:

• Patient and family history, with special attention to palpitations, fainting or recent difficulties during exercise.

• A physical, including blood pressure and a check for abnormal heartbeats.

• An electrocardiogram to measure electrical function of the heart.

• If necessary, a consultation with a pediatric cardiologist to discuss important findings.

Source: American Heart Association

"The goal is to improve the care of children, including allowing them to have their ADHD treated and have it done safely," says Victoria Vetter, director of electrophysiology at Children's Hospital of Philadelphia and lead author of the heart association's statement.

More...

New Grants Available for Families Struggling With Child Health-Related Expenses

2008-04-23T17:39:00.000-07:00

MINNEAPOLIS (April 10, 2008) – UnitedHealthcare Children’s Foundation (UHCCF) announced that new grants are available to help children who need critical health care treatment, services or equipment not covered or not fully covered by their parents’ health benefit plans.

UHCCF provides grants to families to help pay for child health care services such as speech therapy, physical therapy, occupational therapy sessions, prescriptions, and medical equipment such as wheelchairs, orthotics and eyeglasses.

Parents and legal guardians may apply for grants of up to $5,000 for child medical services and equipment by completing an online application at http://www.uhccf.org/. Tax-deductible donations can also be made online.

To be eligible for grants, children must be 16 years of age or younger. Families must meet economic guidelines, reside in the United States and be covered by a commercial health benefit plan. “We are taking action to improve access to health care in America and are dedicated to helping more children and families this year and beyond,” said Matt Peterson, UHCCF president. “We encourage families who need assistance paying for their child’s medical needs to visit the UnitedHealthcare Children’s Foundation Web site and apply today.”

The foundation aims to help more children by increasing awareness of the foundation through fund-raising events, partnerships, newspaper and Web advertising, and a revamped multimedia Web site, www.uhccf.org/.

About UnitedHealthcare Children’s Foundation
The UnitedHealthcare Children’s Foundation is a nonprofit 501(c)(3) organization that strives to enhance either the clinical condition or quality of life of children who have health care needs not fully covered by commercial health insurance. Foundation funding is provided by contributions from employees of UnitedHealth Group as well as individuals and corporations. While UHCCF receives contributions from UnitedHealth Group and its employees, individual and corporate donations to help provide assistance are deeply appreciated. To donate or learn more, please visit http://www.uhccf.org/.

CHD and Neurodevelopmental Risks

2008-04-07T18:42:00.000-07:00

Risk of attention and behavior problems for kids with CHD
Children's Hospital of Philadelphia
Public Release, 7 April 2008

Schoolchildren who required surgery as infants for congenital heart disease (CHD) run a significant risk of having problems with inattention and hyperactivity, and often require remedial services in school. “These children are at risk for academic and behavior problems, and our findings reinforce how important it is to provide them with ongoing follow-up and neurodevelopmental screening,” said study leader Amanda J. Shillingford, M.D., a pediatric cardiologist at The Children’s Hospital of Philadelphia.

The researchers, who reported their findings in the April issue of Pediatrics, studied a group of 109 children, aged five to 10, who had undergone cardiac surgery for complex congenital heart disease at Children’s Hospital when they were newborns. Of that group, 53 children--nearly half of them--were receiving remedial services at school, and 15 percent were in special education classrooms.

Based on questionnaire responses from their parents and teachers, although the majority of the children with CHD scored in the normal range, the rates of high-risk scores for inattention and hyperactivity were three to four times greater than those found in the general population.

Previous studies at The Children’s Hospital of Philadelphia and other centers found that school-aged children with complex CHD tended to have normal cognitive abilities but were at risk for problems in visual and motor skills, as well as impairments in speech, language and executive functioning (executive functioning refers to capacities for attention, planning, decision-making and problem-solving).

“As survival rates have improved,” said Shillingford, “the important longer-term issue is quality of life for patients and their families as they reach school age and beyond. We hope our findings will help raise awareness among parents, teachers and physicians about the children’s risk of neurodevelopmental problems.” Shillingford added that a next step for researchers is to conduct larger, multicenter studies, with more formalized diagnostic tools, and to develop formalized follow-up protocols for these children. Such follow-up programs are currently being designed at Children’s Hospital.

New Techniques for Stenting in Adults with CHD

2008-04-01T07:17:00.000-07:00

A pioneering paper was presented at last week’s Society of Interventioanl Radiology meeting, in Washington, DC by Dr John Moriarty, Specialist Registrar in Dublin’s Mater Hospital. The Mater is the only place in Ireland and one of a few places in Europe that places pulmonary valves in adult patients via stenting. This procedure, which is not yet licensed in the US, was examined with CT during Dr Moriarty’s presentation.

Moving beyond diagnosis and into therapy, interventional radiologists have new imaging techniques and new ways of getting into organs which, when combined, give an extremely powerful new tool that is changing the course of care for patients, in quality as well as quantity of life.

Posted in Research and Education on 29 March 2008

Transposition of the Great Arteries (TGA) and Genetics

2008-03-30T16:48:00.000-07:00

The American Heart Association posted a new "Ask the Pediatric Cardiologist" question today on DTGA and genetic factors, including increased risk of having children in the future who also have heart defects. For information, click here. According to this source...

For a couple who's had one child with DTGA and has no other family members with transposition, the chance of having another child with DTGA increases slightly to about 18 in 1,000 or 1.8 percent. This is also about the same chance of this baby being born with a form of congenital heart disease other than DTGA. This gives a greater than 98 percent chance that the baby will be born with a normal heart.

Canadian Research News

2008-03-28T05:10:00.000-07:00

For the complete article from LabCanada.com, please click here.

SickKids Foundation and the University of Toronto announced today a $2 million dollar donation from BMO Financial Group, which establishes the BMO Financial Group Chair in Cardiology. World-renowned SickKids clinician and researcher, and University of Toronto professor in paediatrics, Dr Andrew Redington has been named the inaugural chair holder.

The $2 million gift will allow Dr Redington to continue to pursue research and contribute to the understanding of congenital heart disease and heart function. Dr Redington's group is currently studying a novel technique developed at SickKids, that has already been shown to protect the heart and other organs from damage due to restricted blood flow during heart surgery.

"Through BMO's generosity and Dr Redington's vision, today's announcement effectively solidifies SickKids as a world leader in children's cardiac medicine," said Mary Jo Haddad, president and CEO at SickKids. "An endowed chair for our head of cardiology is a powerful tool in both retaining people like Dr Redington while recruiting others with similar credentials in the years to come."

Under The Labatt Family Heart Centre headed by Dr Redington, SickKids currently performs 80% of all children's heart transplants in Canada and cares for 80% of all the children in Ontario with congenital heart defects. More than 60% of children requiring heart surgery are under one year of age, and almost a quarter of children requiring surgery are in their first month of life.

Making a Difference

2008-03-24T10:44:00.000-07:00

It seems that the majority of people out there working on congenital heart defect awareness, advocacy and research funding are parents whose lives have been forever changed by their child's diagnosis heart defect.

I recently read an article about one such person named Linette Derminer who has worked hard to get AED devices into schools after her son passed away from an undiagnosed CHD at the age of 17. She even created a foundation called the Parent Heart Watch, to promote research, advocacy, equipment donations and awareness of Sudden Cardiac Arrest (SCA) in youth, which is often attributed to an undiagnosed CHD. She has been nominated for Cleveland Woman of the Year. If she wins, she gets a shopping spree, but more importantly, her charity will receive a hefty sum from Chevrolet. Please join me in supporting her efforts by casting your vote for her today at http://www.clevelandwoy.com/finalists.asp.

The ParentHeartWatch gives the following astonishing statistics:

National Center for Catastrophic Sports Injury reports 5-15 cases annually. This is sponsored by the NCAA and NFHS. It only records High School and College and only in the sanctioned sporting event.
The Sudden Death Athletes registry records about 300 cases annually. It records athletes between the age of 15-35.
The Center for Disease Control reported 2504 cases of heart disease deaths in their latest report year of 2002 under age 24. Over half were in the 15-24 age group. This does not include cases of impact to the chest or secondary effect from other causes such as lightning, heatstroke, etc.
SCA is estimated to affect up to 7,000 young people annually according to the Pediatric Clinics of North America Journal #1999; 46(2):221-234
An estimated 14,000 children and infants die annually from SCD according to the Heart Rhythm Society in May 2004

Great work, Ms. Derminer! You are just one awesome example of the many people out there making a difference for both today's and tomorrow's children by refusing to forget the struggles of yesterday's and today's CHD patients.

"A hero is not an extraordinary person but an ordinary person that does extraordinary thing"
-Christopher Reeves

World's First Non-Surgical Tricuspid Valve Replacement!!

2008-03-10T12:05:00.001-07:00

Nurses at Miami Children’s Hospital’s Congenital Heart Institute helped ensure a good outcome for the recipient of the world’s first non-surgical tricuspid valve replacement, placed in January in the facility’s cardiac catheterization lab.

Click here for the complete story from Nurse.Com.

Health Insurance Help for CHD Families

2008-03-04T18:09:00.000-08:00

Are You or Someone You Know Eligible for Free or Low-Cost Health Coverage?

The Foundation for Health Coverage Education (FHCE) has developed an interactive web site that allows consumers from all 50 states and the District of Columbia to assess options available. "While the information on the site isn't new...its interactive format lets users shortcut through complexities to personalized options much more quickly and easily. The foundation, funded largely by the insurance industry, argues that the oft-cited figure of 43 million uninsured Americans includes many people who don't know of the choices available to them." (Gerber, Washington Post, 8/21)

The website is one of four ways the FHCE highlights on their website to help people find coverage.

Website/Health Coverage Eligibility Tool - Consumers answer 5 questions to help determine which programs they could qualify for.
Phone/US Uninsured Help Line - A Hotline (800-234-1317) is available 24 hours/7 days a week.
Health Care Options Matrix Grid - Consumers can print or download their state's free quick reference guide to public and private health care options.
State-by-State Application & Enrollment Database - Consumers can find resources and applications, by state.

The mission of the FHCE is: "To simplify public and private health insurance eligibility information in order to help more people access coverage."

To access these tools on the FHCE website, go to: www.coverageforall.org/

Poem: The Day I Became a Heart Mother

2008-03-02T14:21:00.000-08:00

A special thanks to Christina Davis, a member of the InterMountain Healing Hearts (based out of Utah) support group, who shared this poem for the blog. Thanks, Christina!

The Day I Became a Heart Mother

One day my world came crashing down,
I'll never be the same.
They told me that my child was sick.
I thought, "am I to blame"?
I don't think I can handle this.
I am really not that strong.
It seemed my heart was breaking.
I have loved him for so long.

I will not give up on this child.
I will listen to your advice.
I will give my child any chance.
No matter what the price.
I will learn all that I need to help my child thrive.
I'll even use that feeding tube.
My child must survive!

Will he need a lot of therapy?
Will he gain the needed weight?
Please God, help me do this.
I will accept our fate.

When the monitors beep at night, it serves as my reminder.
How many parents would love that sound.
Tomorrow I will be kinder.
As another Angel earns his wings,
I run to my child's bed.
I watch him sleep for quite a while.
I bend down and kiss his head.
I cry for the parents whose hearts have been broken.
I look to You wondering why?
Oh Lord, I just can't know your ways....no matter how I try.

And yet, I trust you hold his life, and guide us through each day.
My mind says savor each moment he's here,
but my heart begs, "PLEASE let him stay"!

From pacing the surgical waiting room, to sitting by his bed.
From wishing for a good nights sleep, to learning every med.
From wondering, "will he be alright?", to watching him reach out his hands.
With every smile my heart just melts, despite life's harsh demands.

For all who see that faded line.
I look to them and smile.
You see my child is loved so much.
I would face ANY trial.
That scar I trace with my finger (It's the door to his beautiful heart).
God must have known how much I'd love him (Just as He loved him from the start).

A heart mom is always a heart mom.
Now wise beyond her years.
For those who have angels in heaven,
Our hearts share in all of your tears.

Every day I will try and remember,
I was chosen for him (and no other).
I will always embrace that beautiful day.......
When I became a "Heart Mother".

- Author Unknown

Leap Day: Last Day of CHD Awareness Blog-A-Thon

2008-02-29T17:07:00.000-08:00

THANK YOU FOR PARTICIPATING!

What a month it has been! It's hard to imagine that only a month and a half ago, I found out for the first time that Feb. 14 was the official "CHD Awareness Day," and that Feb. 7-14 was "CHD Awareness Week." One month ago I decided to start this little attempt at educating myself, and along the way maybe a few friends and family members, about the issues facing CHD families and survivors today.

Today I'm a bit emotional about this whole thing. I have met a wide variety of new people through this blog - adult CHD survivors who are worried about finding adequate health care and professionals experienced with adult CHD issues; parents of children who have been lost due to CHD; a teenager on a crusade not to "be a freak" anymore; and bunch of parents who share the same concerns I do, and who are ready and willing to step up to the plate and find ways to work together to get the word out to our government and the public at large. It's been an overwhelming, inspiring, sometimes heartbreaking, joyful, somber and overly intense month.

I've debated what to do with this blog... continue? Let it go? I added some analytics to watch the number of page views per day, and I'm surprised at how many of you have hung in there, who read regularly and who continue to come back. Thank you!

Better yet, the blog is coming up in web searches more and more frequently! This is great news to me, personally. When I was in the hospital while my daughter, Sadie, was fighting for her life, I sought the Web relentlessly for links to groups, people and answers about TGA (her specific diagnosis) and heart defects. I never thought to look for Congenital Heart Defects, and missed out on the support I could have found through that avenue. In fact, my doctors never even mentioned CHD as her diagnosis. Hopefully a few other parents new to the diagnosis will stumble across this site and find the links they need for support, facts and answers.

To answer my own question about what to do with this blog, I finally came to the decision that though it will be work, I'd like to keep the blog going. But in order to do it, I'll need to find new data sources, keep abreast of the news, share new stories and insights and get input on future directions. One month of entries was a huge task to take on. I won't be as regular, that's for sure! I guess what I'm trying to say is, that your help is appreciated and needed - if you stumble across items of interest, stories you'd like to share, newly published facts, articles, etc., I would love to share it with this reading community!

To all who have come and visited, and all of you who will continue to, thank you. I wish you and your families much health and happiness in the year to come!

Best wishes,

Kim, mom to Katie (5, HH) and Sadie (17 months, TGA, ASD, VSD)

Information from US NIH

2008-02-28T17:33:00.000-08:00

I found a fabulous cross-referenced website I'd been missing last night - the National Institute of Health (US) has a webpage chocked full of information and news on CHD. Check it out!

This has been the most helpful page I've found so far... they have links to videos, clinical trials, current research, recent news and advancements, treatment options and more.

Why is it so hard to find info on CHD? Maybe I just wasn't looking in the right places before...

In the News: Experienced Hospitals are Better

2008-02-27T23:50:00.000-08:00

Babies With Heart Defects Do Best at Hospitals With Most Experience
Centers with a high volume of corrective surgeries show higher survival rates, study found

URL of this page: http://www.nlm.nih.gov/medlineplus/news/fullstory_59014.html (*this news item will not be available after 03/16/2008)

HealthDay

Robert Preidt

Monday, December 17, 2007

MONDAY, Dec. 17 (HealthDay News) -- Babies with congenital heart defects are more likely to survive if they're treated at a hospital with the most experience in treating such cases, U.S. researchers conclude.

Researchers at the University of Michigan analyzed figures from the 2003 Kids' Inpatient Database, which is sponsored by the U.S. Agency for Healthcare Research and Quality and includes information on children hospitalized in 36 states.

The study authors focused on two of the most severe congenital heart defects: transposition of the great arteries (TGA), in which major blood vessels leading between the heart and lungs are reversed; and hypoplastic left heart syndrome (HLHS), in which the left side of the heart does not develop properly.

If heart surgery isn't done within a few weeks of birth, both conditions are fatal. An arterial switch operation is used for TGA and an operation called the Norwood procedure is used to correct HLHS.

Reporting in the online edition of Pediatric Cardiology, the team found that the risk of an infant dying in a hospital during or after one of these operations varied greatly depending on the number of these procedures performed at a hospital. Death rates ranged from less than 1 percent to more than 10 percent for the arterial switch operation, and from around 10 percent to more than 35 percent for the Norwood procedure.

"The relationship between hospital volume and risk of dying was significant across the spectrum for both defects, though in the case of arterial switch operations, the difference dwindled among hospitals that performed about 15 or more in a year," study author Dr. Jennifer Hirsch, a pediatric cardiac surgeon, said in a prepared statement.

HealthDay
Copyright (c) 2007 ScoutNews, LLC. All rights reserved.

The Sibling Factor

2008-02-26T17:32:00.000-08:00

I often think that siblings have the toughest task of any family member when a family is faced with CHD. Not only do they lose much of their parents attention during "high-stress" periods, they fear for their sibling, and they are often left out of the loop, but realize something is wrong.

I can see substantial changes in my oldest daughter, who is now five. She was a few weeks shy of turning four when her sister was born with TGA. Her world crumbled around her - instead of going to the hospital and meeting her new little sister we'd all been so eagerly anticipating, she came to the hospital and waited a few hours, until we realized something was wrong and sent her home with her grandparents. It was several days before she saw us again, and her new baby sister was hooked up to machines, swollen and blue. I didn't realize at the time how bad her new baby sister looked - but looking back at the photos, I'm shocked that I let my older daughter see her in that condition. I guess we just do the best that we can at the time.

My oldest daughter was bounced between family members while we stayed in the hospital that first month. It was also the first month of school, and she missed the crucial bonding period in her new preschool. By the time we came home, she'd fully regressed in her potty training, and had stickers covering her babies "to monitor their hearts."

The next few months didn't let up for her. We faced a flurry of doctors appointments every week, the challenge of fitting into a preschool with kids she didn't know (who by that point all knew eachother), and a crying, frantic bundle of energy that she so desperately wanted to cuddle with, but couldn't stand to be touched. Our oldest daughter tried so hard to love her baby sister, to hold her during "good times" and she was fiercely protective of her. I remember one time I had to take both girls to the doctor, and she got very angry with a nurse who was going to give Sadie a shot. She just wouldn't stand for it.

Over the past year and a half, the baby has gradually calmed a bit, and now will even give her big sister hugs from time to time. Just the other day, the eldest was hurt, and the youngest came running to give her a hug and kiss. It melted my heart - finally my big girl is getting the baby sister she's always dreamed of.

Since those early days with the baby I've seen a lot of changes in my oldest daughter. She's more self-reliant. She's confident and more outgoing. But at the same time, she panics if anyone is sick or hurt. She is scared of the doctor. And she's incredibly clingy with the people she is closest to. It's not a surprise in anyway that we've noted these changes... but it is sad that she's gone through these changes so quickly. I miss her innocence.

I'm so proud of my oldest daughter. She has been such a good girl throughout the entire ordeal, and she's so incredibly compassionate and strong. There were many times this past year during this whole ordeal that I simply would not have made it another day without her. She's a shining light and I'm so thankful she came first, to light the way for her special little sister.

Somewhere... Someplace...

2008-02-25T17:49:00.000-08:00

Somewhere…someplace… today…
A family is waiting to hear…
Is something wrong with their baby?
The answers aren’t quite clear…

This family has entered an unwanted world…
And they just don’t know what to expect…
Somewhere…someplace… today
They first heard the words: heart defect.

And how they hoped this was not true…
And thought… this cannot be…
I too… know just how this feels…
For one day…this was me.

Somewhere…someplace…today…
A man and a woman embrace…
Their baby is in surgery…
They long to see her face…

They haven’t got to hold her yet…
Without…a cord or line…
They pace the room awaiting news…
And hope she’ll be just fine.

Prayers fill this busy waiting room…
And mom and dad are scared…
Somewhere…someplace..today…
The tiniest hearts are repaired.

Somewhere…someplace…today…
A child’s growing fast…
Smiling,laughing,thriving…
His mom thinks…can this last?

It’s almost easy…to forget…
That anything is wrong…
Somewhere…someplace..today…
Her child seems so strong.

Somewhere…someplace… today…
A little boy fights…just to live
A father holds his tiny hand…
His love…all he can give…

The doctor’s are all baffled…
They fear that he might die…
Somewhere…someplace…today…
A family says goodbye…

Somewhere…someplace…each year..
More than 40,000 families will see…
What it means…when something’s wrong…
They’ll face a CHD.

Today…for just a moment…
Stop…remember…reflect…
Make time to tell someone you know…
“I’ve been changed by a heart defect.”

Author - Stephanie Husted

References on Prenatal CHD Diagnosis Research

2008-02-24T17:52:00.000-08:00

It looks like there are others out there who, like me, want to absorb all they can about CHD, incidence rates, diagnosis rates and other information. Often that info is hard to find.

The following references were uncovered by MaryAnn Kuzio, mom to a son with CHD. Thanks for sharing this information MaryAnn!

Trends in Prenatal Diagnosis, Pregnancy Termination, and Perinatal Mortality of Newborns With Congenital Heart Disease in France, 1983-2000: A Population-Based Evaluation
Babak Khoshnood, MD, PhD*, Catherine De Vigan, MD*, Véronique Vodovar, RN*, Janine Goujard, MD*, Anne Lhomme, MS*, Damien Bonnet, MD{ddagger} and François Goffinet, MD, MPH*
Paris Registry of Congenital Malformations, Epidemiological Research Unit on Perinatal and Women's Health, INSERM U149, Villejuif, France
Service de Cardiologie Pédiatrique, Hôpital Necker-Enfants, Malades, Paris, France
http://pediatrics.aappublications.org/cgi/content/full/115/1/95

Published online January 3, 2005
PEDIATRICS Vol. 115 No. 1 January 2005, pp. 95-101
(doi:10.1542/peds.2004-0516)

Objective. To examine population-based overall and malformation-specific trends in the prenatal diagnosis, pregnancy termination, and perinatal mortality for congenital heart disease (CHD) during a period of rapid
progress in prenatal diagnosis and medical management of CHD and to explore the impact of prenatal diagnosis on early neonatal mortality for specific (isolated) cardiac malformations.

Methods. A total of 1982 cases of CHD, which were not associated with a known chromosomal anomaly, were obtained from the Paris Registry of Congenital Malformations. Main outcome measures were trends in the proportions diagnosed and terminated before birth, stillbirth, and early (<1 day, 1-week) neonatal mortality for (1) all cases; (2) all cases excluding isolated ventricular septal defects; and (3) malformation-specific trends for transposition of great arteries, hypoplastic left heart syndrome, coarctation of aorta, and tetralogy of Fallot. Analyses included cusum and binomial regression models for analysis of the trends during 19832000.

Results. Prenatal diagnosis rates for CHD increased from 23.0% (95% confidence interval [CI]: 19.027.4) in 19831988 to 47.3% (95% CI:43.850.8) in 19952000. Termination rates increased between 1983 and 1989 (9.9%; 95% CI: 7.213.2) and 1989 and 1994 (14.7%; 95% CI: 12.317.4) but seemed to remain stable thereafter. Other than for hypoplastic left heart syndrome, pregnancy termination was exceptional for the other 3 specific malformations examined. Early neonatal mortality decreased to less than one third in the period 19952000 as compared with 19831989 (risk ratio, first-week mortality: 0.31; 95% CI: 0.180.53). First-week mortality was significantly lower for cases of transposition of great arteries that were diagnosed before birth (risk difference: 15.4%; 95% CI: 4.026.7).

Conclusions. Progress in clinical management, together with policies for increased access to prenatal diagnosis, has resulted in both a substantial increase in the prenatal diagnosis and considerable reductions in early neonatal mortality of CHD in the Parisian population.

-----------------------------------

Prenatal diagnosis of six major cardiac malformations in Europe : A population based study
Ester Garne and THE EUROCAT WORKING GROUP, From the University of Southern Denmark, Odense C, Denmark
Members of the Eurocat Working Group:Bianchi F, CNR Institute of Clinical Physiology, Pisa (I); Garcia-Minaur S, Hospital de Cruces, Baracaldo (E); Gillerot Y, Institut de Pathologie et de Genetique, Loverval (B); Riano Galan I, Registry of Asturias, Orviedo (E); Nelen V, Provincial Institut voor Hygiene, Antwerp (B); Nevin N, Queens University of Belfast (UK); Philip N, Hopital d¹Enfants de la Timone, Marseilles (F); Stoll C, Hopital de Hautepierre, Strasbourg (F); Stone D, Yorkhill Hospital, Glasgow (UK); de Vigan C, Inserm, Paris (F); de Walle H, University of Groningen (NL).
http://www.blackwell-synergy.com/doi/abs/10.1034/j.1600-0412.2001.080003224.x

Aim. To present data on prenatal diagnosis of six major cardiac malformations in low-risk European populations.

Methods. Data from 12 Eurocat registries on congenital malformations. All registries have multiple sources of information and use the same methods of data collection and coding. The six cardiac malformations included were hypoplastic left heart, tricuspid atresia, single ventricle, Tetralogy of Fallot, transposition of great arteries and common A-V-canal.

Results. There were significant differences in the proportion of cases diagnosed prenatally, with the highest detection rate in France (91% for single ventricle in Paris) and the lowest detection rate in countries without prenatal ultrasound screening (no cases diagnosed prenatally in the Danish registry area). Prenatal detection rate was significantly higher for the three malformations affecting the size of the ventricles (hypoplastic left heart, tricuspid atresia, single ventricle) compared to the other three malformations (46% versus 24%, p<0.001). Time of diagnosis was late, with only one third diagnosed before 24 weeks of gestation. The risk of fetal death seems to be low.

Conclusion. There are significant regional differences in prenatal detection rate of major cardiac malformations in Europe.
------------------------------

http://www.springerlink.com/content/rka44dbmk2a93f8t/

Abstract Fetal echocardiography has impacted the fetus with congenital heart disease in many important ways. Advances in fetal echocardiography have allowed for more accurate and earlier detection of cardiac abnormalities. In turn, the prenatal diagnosis of cardiac abnormalities has improved the care and outcome of selected fetuses with severe
cardiac malformations or arrhythmias. Fetal echocardiography has improved the understanding of the development and evolution of congenital heart disease in utero, and it may serve a role in identifying candidates for prenatal intervention. The prenatal diagnosis of congenital heart disease has allowed for better counseling and preparation of families regarding the anticipated prenatal development of the fetus as well as the expected postnatal management plans and prognosis. This article reviews the impact of fetal echocardiography in these and other areas.

-----------------------------

Importance of timely diagnosis of congenital heart disease
Houssem Masmoudi & Martial M Massin
Queen Fabiola Children¹s University Hospital, Department of Paediatric Cardiology, Free University of Brussels (ULB), Brussels, Avenue J. J. Crocq, 15 B-1020, Belgium. martial.massin@huderf.be
http://www.futuremedicine.com/doi/abs/10.2217/17455111.2.1.47

Most important types of congenital heart disease can be recognized early during prenatal or neonatal screening. However, a substantial proportion of cardiac defects are not diagnosed in due time. Such delay may lead to serious complications or even death. This article reviews the impact of screening strategies upon the outcome in pediatric cardiac patients.
----------------------------------

http://www.hirsla.lsh.is/lsh/handle/2336/16073

Objective: About 1% of live born children have congenital heart defects (CHD). Knowledge of the true incidence of CHD is important because of the risk of bacterial endocarditis in patients with heart defects. This knowledge could also serve as a basis for research on the etiology of CHD. The aim of our study was to investigate the incidence of CHD in
children born in Iceland during a ten year period, from 1990 to 1999. A similar study on CHD was carried out in Iceland for children born 1985-1989. The incidence of CHD in the present study was compared to the previous and to similar studies from other countries. Material and methods: Information about the patients were obtained from medical records from two hospitals covering the whole country, a private clinic of pediatric cardiologists, echocardiography database, autopsy reports and death certificates. Distribution of specific heart defects, age at diagnosis, symptoms leading to the diagnosis, referral pattern, treatment and quality of life was investigated. Other congenital defects, chromosomal defects and syndromes in the patients were studied.

Premature children with patent ductus arteriosus (PDA) and children with patent foramen ovale (PFO) or atrial septal defect (ASD) smaller than four millimeters were excluded. We also studied the incidence of bicuspid aortic valve (BAV). All diagnoses were confirmed with echocardiography and in some cases cardiac catheterization.

Results: Between 1990 and 1999 there were 44,013 live births in Iceland, 740 children were diagnosed with a CHD or 1.7% of live born children. Yearly incidence varied from 1.04% of live births in 1991 to 2.34% in 1997.
Male/female ratio was 1/1. The distribution of the defects was following: ventricular septal defect (VSD) 338 (45.7%), ASD 90 (12.2%), PDA 85 (11.5%), valvar pulmonal stenosis 48 (6.5%), BAV 38 (5.1%), coarctation of the aorta 28 (3.8%), tetrology of Fallot 22 (3.0%), transposition of the great arteries 14 (1.9%), aortic stenosis 11 (1.5%), common atrioventricular septal defect 10 (1.4%), mitral valve regurgitation 9 (1.2%), sub-aortic stenosis 7 (0.9%) and hypoplastic left heart syndrome 5 (0.7%). Other defects were less frequent.

About 47% of children with CHD were diagnosed either before birth or before discharge from the delivery institution. A cardiac murmur on examination was the most common symptom leading to the diagnosis of CHD, 631 patients (85.3%). Extracardiac anomalies were seen in 89 patients (12.0%). Chromosomal abnormalities were seen in 36 patients of whom 28 had Down's syndrome. The majority or 499 patients have no symptoms but are still in follow-up, 20 patients have daily symptoms and/or receive medical treatment and 27 patients have died.

Conclusions: Annual incidence of patients diagnosed with a CHD has increased during the study period. This is observed in minor CHD but the incidence of major defects does not alter. This yearly incidence (1.7%) is higher than in
the previous study, where it was 1.1%. The difference can partly be explained by the BAVs, which were excluded in the 1985-1989 study. But the number of CHD diagnosed each year has increased, this being most pronounced in the last three years. The annual incidence in our study is also higher than in other population studies. The most likely
explanation for the higher incidence in our study is the fact that access to pediatric cardiologists is very good in Iceland. Diagnosis, registration and follow-up is conducted by only a few cardiologists for the whole nation and takes place at a single pediatric cardiology center. Of 740 patients diagnosed with CHD in the study period 713 are alive. The outcome of the therapy is good and the majority of the patients has no symptoms.

Insurance Info

2008-02-23T17:50:00.000-08:00

I received two replies that I thought may be helpful to share concerning the insurance issue previously posted. Hopefully they might be helpful for families like ours that struggle to find insurance answers.

Also, I found the following organization, Coalition for Affordable Health Care, that has data, facts and info about current insurance initiatives, bill failures, proposals and more in the US. According to them, 60% of persons in small businesses is uninsured. Other uninsured majorities include minorities, self-employed and high-risk individuals.

We became pregnant with our son right after my husband had graduated from college, so we were on the state health care plan. The entire pregnancy we were unemployed as my husband searched desperately for a job. Two weeks
before Jacob was born He found employment with a great company with decent benefits.

Being on the state health plan, if you are pregnant when you are on it they are obligated to cover all the pregnancy, birth and one year after. So, we got lucky, even though we had other insurance by the time he was born - his
surgery, everything was covered 100% - we never saw a bill. We realized how fortunate we were as we visited with other families who were still trying to pay their hospital bills.

A year later my husband switched companies and there was to be a period before benefits would start - everyone would be covered under cobra - except our son. Luckily the new employers used the same insurance company, so we were able to keep from breaking coverage. It is a hard reality to us that my husband would need to stay employed with a company that offered great benefits becuase we wouldn't be able to find insurance for our son otherwise. We looked at other supplemental things and it is always the same - no coverage for our son. We considered
doing some of those life insurance things for children - no coverage for him. We've been more fortunate than most - I just don't know how they manage it.

There is a lot of pressure. Any time my husband considers looking for new employment, benefits are a MAJOR factor - as well as not wanting to move away and leave our awesome doctors who know us and our situation so well. I can't help either, we have 5 children (our fifth born in December - almost 2 months old now) and I stay at home with them and teach piano lessons, so like in your family, the responsibility to ensure our son lies on my husbands shoulders. I feel guilty too not being able to do more to help.
--Julia

California Children’s Services will pay for your child’s cardiac care until she is 21 years of age. She should also be eligible for MediCal as well or maybe Healthy Families. I see middle income and lower income families that have the same problem. Check out the webpage of http://www.dhs.ca.gov/pcfh/cms/ccs/ to see if you are eligible.
--Norene

NOTE: Norene has been kind enough to offer to look further into this with other states. To my knowledge, the state in which I reside (Virginia) does not have a program under which we can be covered, as a family of 4 (which is what we are) must make $42k or less to qualify.

Thank you, ladies, for sharing your information and stories!

What we need to convey

2008-02-22T19:27:00.000-08:00

Our cause is lost in a sea of cause-related campaigns. But ours is equally as important as breast cancer and AIDS.

I came across a company called Ethos JWT, today, that specializes in social responsibility for corporations and, of course, advertising. Here is a sample of what they do.

Can you imagine what we can do if we can get our message as part of a corporations national campaign? Forget the PSAs, let's dig in to our employers (or our husbands or whoever) and get them onto our campaign. Kids causes are the #1 "seller" cause, so we should be a shoe in. Or, let's come together ourselves (maybe through CHIN?) and get something like this done and on the air.

Moms Will Find the Answers to Save our CHD Kids

2008-02-21T18:56:00.001-08:00

Today, I've been inspired and revitalized on the whole CHD front. My day was full of outstanding presentations at the Consumer Trends Forum here in Boston. I've learned a ton, and will have more take-homes than I think I've ever had from a conference. But this is CHD month, and I'm on this mission to promote awareness, and thus one thing is stuck out in my head.

These past few weeks I've been mulling over the whole CHD awareness thing. Why don't people know about it? Why is it a "silent" epedemic? Why can't we get more research dollars?

You know why? Our children do not have a vote. Most CHD survivors don't realize they are part of an overall picture. And MOMS are not strong enough advocates. Sure, we tell our close friends and family, maybe even a congress member, but we aren't using our greatest strengths to change the face of this daunting task.

Don't get me wrong. As parents of children with CHDs, there is nothing more we want than to find treatments, answers, cures. There is nothing more we want than to save another mother from the pain we have seen ourselves and watched our children endure. But we are discounting ourselves.

One of the speakers at today's meeting was Maria Bailey, founder of a mom-based marketing group called BSM Media. A lot of things she talked about struck a chord with me (e.g. finding out I'm a mompreneur, how moms will decide who the next president is and how much major brands want to woo us). I left with the new reality that more moms are coming who are connected, who share my values, and who work in a similar manner that I do, yet share my family-first values. We, the mompreneurs, soccer moms and SAHMS, have more power than I ever imagined.

Why does this relate to CHD? Because I think we're underselling ourselves as moms. I myself have said, "I'm just a mom" when referring to my role in CHD awareness. I've made a weak attempt at awareness. And I discount my desire for change (I want it, but have felt that I can't achieve it on my own).

Here's the reality, though, and it's a kicker. I'm part of a $2.1 TRILLION dollar buying power who can influence my favorite brands. My vote will change our future. My voice does matter, because it's not a voice of one, but of thousands. We have POWER, and it's time to tap into it.

Tonight I learned that we have more influence than I ever imagined. Now it's our responsibility to tap into that power to bring attention to the matters we care about most - the health, well-being and future of children and adults with CHD. It's time to erase the "silent" part of the epidemic we face and find answers. I'm fired up and ready for action. Now for the next step...

- How do we come together to accomplish changes in legislation?
- How do we join forces and change the pitiful funding for the research that will change our children's lives?
- And how do we use our buying power and leverage to influence major companies to join our fight for our children and future generations?

Uninsurable

2008-02-20T13:28:00.000-08:00

I'm wondering how many other families there are out there who have heart children that have been deemed "uninsurable." Here is our family's story...

Our daughter was born in September and had open heart surgery almost immediately. My husband's employer was AWFUL about giving him time off to be with his tiny newborn, and he soon began to look for another position elsewhere. Fast forward to April of 2007, and he took a contracting job for a major financial firm. Because he is not an employee, he does not get benefits. I am a small business owner, so we made the assumption that we could still find somewhat affordable insurance.

The reality is that we can not find ANY insurance that is willing to provide coverage for our "heart" baby, who had the ASO switch in September 2006. We have been told that it will be a total of five years before insurance will be considered for her, but that the rest of our family may be covered.

It's a sad state that our healthcare system is in. I would consider our family to be "middle class," yet we have no access to insurance for our daughter. We have been told time and again that we would be better off in terms of health care for her if we were on government assistance (welfare). Every time we walk into the pediatrician's office (which, of course, is often) it's a huge hit.

Has anyone else faced this dilemma? Email me at learnaboutchd@gmail.com.

CHD Info From the March of Dimes

2008-02-19T21:50:00.000-08:00

The March of Dimes is a one of the several reliable sources of information on Congenital Heart Defects. Below are some excerpts from their website.
Congenital Heart Defects

About 40,000 infants (1 out of every 125) are born with heart defects each year in the United States (1). The defect may be so slight that the baby appears healthy for many years after birth, or so severe that its life is in immediate danger.

Heart defects are among the most common birth defects and are the leading cause of birth defect-related deaths (2). However, advances in diagnosis and surgical treatment have led to dramatic increases in survival for children with serious heart defects.

What tests are used to diagnose heart defects?
Babies and children who are suspected of having a heart defect are usually referred to a pediatric cardiologist (children’s heart disease specialist). This doctor will do a physical examination and often recommend one or more tests. These tests often include a chest X-ray, an electrocardiogram (which records heart rate patterns) and an echocardiogram (a special form of ultrasound that uses sound waves to take pictures of the heart). All of these tests are painless and non-invasive (nothing enters the child’s body). Some children with heart disease also may need to undergo a procedure called cardiac catheterization. In this procedure, a thin, flexible tube is inserted into the heart after the child is given medications to make him sleepy. This test provides detailed information about the heart and how it is working.

What causes congenital heart defects?
In most cases, scientists do not know what makes a baby's heart develop abnormally. Both environmental and genetic factors appear to play roles.

A few environmental factors are known to contribute to congenital heart defects. Women who contract rubella (German measles) during the first three months of pregnancy have a high risk of having a baby with a heart defect. Other viral infections also may contribute, as may exposure to certain industrial chemicals (solvents) (1, 3). Drinking alcohol in pregnancy also can increase the risk of heart defects, as may cocaine (3).

Certain medications increase the risk. These include the acne medication isotretinoin (Accutane and other brand names), lithium (used to treat certain forms of mental illness) and certain anti-seizure medications (3).

Certain chronic illnesses in the mother may contribute to the risk. For example, women with diabetes are at increased risk of having a baby with a heart defect (3). However, women with diabetes can reduce their risk by seeing their health care provider before pregnancy to make sure their blood sugar levels are well controlled. Women with an inherited error of body chemistry called phenylketonuria (PKU) also are at high risk of having an affected baby, unless they follow a special diet before and during pregnancy (4). Some studies suggest that women who do not consume enough of the B vitamin folic acid before and during the early weeks of pregnancy may be at increased risk of having a baby with a heart defect (3).

Scientists are making progress in understanding the genetics of heart defects. Since the 1990s, they have identified several gene mutations (changes) that can cause heart defects. For example, a March of Dimes grantee discovered a series of genetic steps that appears to contribute to a common, important group of malformations affecting the heart’s outflow tract (5). He also identified a gene that can cause a heart defect called an atrial septal defect (a hole between the upper chambers of the heart) and one that may contribute to hypoplastic left heart syndrome (underdevelopment of the heart’s main pumping chamber) (6, 7).

Heart defects also can be part of a wider pattern of birth defects. For example, about one-half of children with the chromosomal abnormalities Down syndrome (mental retardation and physical birth defects) and Turner syndrome (short stature and lack of sexual development) have heart defects (8). Children with Down syndrome, Turner syndrome and certain other chromosomal abnormalities should be routinely evaluated for heart defects. Heart defects also are common in children with a variety of inherited disorders, including Noonan (short stature, learning disabilities), velocardiofacial (craniofacial defects and immune deficiencies), and Holt-Oram (limb defects) syndromes (9).

What research is under way on congenital heart defects?
Scientists funded by the March of Dimes are among many who are trying to learn more about the causes of heart defects, so that they can develop better ways of preventing and treating them. For example, a number of March of Dimes grantees are studying genes that may underlie specific heart defects. March of Dimes grantees also are looking at how environmental factors (such as a form of vitamin A called retinoic acid) may contribute to congenital heart defects. Other researchers are exploring the possibility of prenatal surgery to correct heart valve abnormalities and help prevent serious heart problems (10).

For more information

References
1. American Heart Association. Congenital Heart Defects. Accessed 7/8/05.

2. Kochanek, K.D., et al. Deaths: Final Data for 2002. National Vital Statistics Reports, volume 53, number 5, October 12, 2004.

3. Mone, S.M., et al. Effects of Environmental Exposures on the Cardiovascular System: Prenatal Period Through Adolescence. Pediatrics, volume 113, number 4, April 2004, pages 1058-1069.

4. Michals-Matalon, K., et al. Nutrient Intake and Congenital Heart Defects in Maternal Phenylketonuria. American Journal of Obstetrics and Gynecology, volume 187, 2002, pages 441-444.

5. Yamagishi, H., et al. Tbx1 is Regulated by Tissue-Specific Forkhead Proteins Through a Common Sonic Hedgehog-Responsive Enhancer. Genes & Development, volume 17, January 15, 2003, pages 269-281.

6. Garg, V., et al. GATA4 Mutations Cause Human Congenital Heart Defects and Reveal an Interaction with TBX5. Nature, volume 424, July 24, 2003, pages 443-447.

7. Garg, V., et al. Mutations in NOTCH1 Cause Aortic Valve Disease. Nature advance online publication, July 17, 2005.

8. Hoffman, J.I.E. Congenital Heart Disease, in Rudolph, C.D, and Rudolph, A.M. (editors): Rudolph’s Pediatrics, New York, McGraw-Hill Medical Publishing Division, 2003, pages 1780-1783.

9. Pajkrt, E., et al. Fetal Cardiac Anomalies and Genetic Syndromes. Prenatal Diagnosis, volume 24, 2004, pages 1104-1115.

10. Ohye, R.G., and Bove, E.L. Current Topics in Congenital Heart Surgery, in: Allen, H.D., et al (editors), Moss and Adams’ Heart Disease in Infants, Children, and Adolescents, 6th Edition, volume 1, Philadelphia, Lippincott Williams and Wilkins, 2001.