Why This is So Important

We all know that life is fragile, and that there are no guarantees about how long we, or our loved ones, get to be here. But the families of and survivors of CHD, are exponentially more aware of this, and of every seemingly “tiny” health matter.

Every germ is the enemy, every virus has the potential to wreck havoc on CHD patients’ broken hearts. We stock up on large bottles of Purel, are on constant alert at playdates for signs of sniffy noses and stay away from indoor public play areas. Because when our kids get sick, the child's heart does as well, and their hearts are often already struggling.

Today, I received news from Josie (who wrote yesterday's entry) that her daughter was admitted to the hospital last night with RSV. She's improving since her initial, scary admission, but there's still concern over the impact the virus could have upon her heart. It’s a scary situation and one that can only be helped by skilled medical practitioners, positive energy and prayers.

Unfortunately, Josie and her family are not the only ones struggling. Today I talked to my friend Karen, whose daughter has Hypoplastic Left Heart Syndrome (HLHS), meaning her daughter’s heart is missing most of the left ventricle. She told me that she dreads the question that most people ask her – “Is there a fix for your daughter’s heart?” Here’s what Karen says...

Unfortunately my daughter's heart will never be "fixed." She has half a heart. She has been "rewired" to live on one ventricle. We will live in constant fear that her heart will peeter out. We will live in constant fear that she will get an infection that her heart cannot handle. We realize that it is a good probability that she will need additional surgeries and /or a heart transplant in her future. So, no, she is not fixed. There is not a fix for Hypoplastic Left Heart Syndrome.

One can only imagine her heart break every time she has to answer this question for the well-meaning stranger who asks it. Or how much she hates that it.

What is the point of sharing these two stories with you? The point is, that because the public is not aware of CHD, it is also not aware of the pain our families face. Of the fears. Of the overwhelming desire for “normalcy” (whatever that may be) and the inability to gain it for our children. Of the yearning we have for a "fix" that has not yet been discovered.

Because the public does not know much about CHD, there is not enough of a demand to allocate the funds into the research. Through knowledge, we can find ways to raise interest, to raise awareness, to raise funds for research that will find earlier diagnoses, fixes and cures, medications and therapies. I… WE (the parents of children with CHD)… hope you will join us as we work to spread awareness to our peers, our legislators, our corporations, our friends.

Development of the Heart

A special thanks to Josie, the mother of a little girl who was has the CHD known as Transposition of the Greater Arteries (TGA), for today's post!

When you stop to think about the process of fetal development, really think about what is happening every day, it's absolutely breath-taking. The heart is one of the very first organs to form, in fact, it begins to beat often before the mother even knows that she's pregnant, within 21 days of conception. Congenital heart defects thus occur in the first days and weeks of existence; by the time the heart begins beating, most structural anomalies already exist. Depending on the particular defect, that may only be the beginning.

Although the structures of the heart exist from the earliest days, the heart itself continues normal development throughout the pregnancy. The flow of blood through the heart furthers growth and development of the various structures. When there is a structural anomaly, the blood may follow an unusual path through the heart and thus exacerbate the defect. Other defects result not from structural problems, like our daughter's, but rather from problems with the valves in between each section of the heart. Valves are critical to normal cardiac functioning because they prevent the backwards flow of blood as the heart contracts to pump blood to the body and the lungs. In order to function properly and efficiently, the flaps must be thin and pliable and should open completely and close completely. When they don't work, either because they are too small and restrict the flow of blood through the valves, or because they are weak and leaky, the development of the fetal heart may be seriously impacted. Problematic valves may prevent entire chambers of the heart from growing and developing.

But I digress. The point of this post was to explain that congenital heart abnormalities exist from the earliest days of the pregnancy. And no one knows why. No one knows what triggers the incorrect formation or when exactly development goes awry. Sometimes, although very rarely, there is a genetic component. The vast majority of congenital heart defects have an unknown cause and therefore we don't know how to prevent them. Seriously, when you stop to think about it, a normal heart is really quite amazing!

Inspiration for Change

Recently, songwriter Will.i.am of Black Eyed Peas fame wrote a song to accompany one of Obama's speeches. While I'm not a fan of politics, I was moved by the emotion portrayed in the video, and by the words... whether or not they are rhetoric. On the website he created to feature this video (dipdive.com) Will.i.am wrote:

When you are truly inspired..
magic happens...
incredible things happen...
love happens..
(and with that combination)

Inspiration breeds change...

What does this have to do with CHD Awareness? Many things. It shows how powerful video media can be. It shows that by inspiring people, action can be created. It shows that many are willing to join in a cause they believe in.

But over all this, this video was a reminder... that through inspiration, change is acquired. I've been inspired by the other CHD moms who are tackling this issue by my side. And by the surgeons and cardiologists who are at this very moment finding new paths of treatment, new ways to save lives.

Take a look at this video created by a mom from the Central Virginia Mended Little Hearts group to promote CHD Awareness.

After gaining this inspiration and insight, one can't help but feel a spark of hope, and an emblazoned desire to create change. Creating awareness is a HUGE challenge, but messages like these drive me to take action. Can we inspire others through our small movement? Can we cultivate this plight for awareness, and in doing so, save lives? YES WE CAN.

What causes Congenital Heart Defects?

Taken From Mended Little Hearts website.

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

Among the few environmental factors known to contribute to congenital heart defects are a virus and certain drugs. 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.

Certain medications also increase the risk. These include the acne medication Accutane, lithium (used to treat certain forms of mental illness) and, possibly, certain anti-seizure medications. Drinking alcohol in pregnancy also can increase the risk of heart defects—babies with fetal alcohol syndrome (FAS) often have them. Studies also suggest that use of cocaine in pregnancy increases the risk of these birth defects.

Certain chronic illnesses in the mother also can increase the risk of heart defects. For example, women with diabetes are at increased risk of having a baby with a heart defect, although this risk can be reduced or eliminated if the diabetes is closely controlled, starting before pregnancy. Women with an inborn error of body chemistry called phenylketonuria (PKU) also are at high risk of having a baby with a heart defect, unless they follow a special diet before pregnancy and during the first trimester. Several studies suggest that women who do not consume enough of the B vitamin folic acid before and during the early weeks of pregnancy are at increased risk of having a baby with a heart defect.

While most families have no more than one child with a heart defect, these malformations are more likely to occur in siblings or offspring of people who have heart defects than in unaffected families. This fact has long suggested that genetics plays a role in heart defects, at least in those families. In fact, scientists have recently discovered more than 100 mutations (changes) in more than a dozen genes that directly impair the heart. Many of these mutations cause cardiomyopathy (enlargement of the heart) or heart rhythm disturbances that can be fatal in childhood, adolescence or adulthood.

However, scientists also have pinpointed several mutations that affect the formation of the heart, leading to congenital heart malformations. For example, in 1999 a March of Dimes grantee at the University of Texas Southwestern Medical Center in Dallas discovered a gene that appears to contribute to a common, important group of malformations affecting the heart’s outflow tract and the blood vessels arising from it. Researchers at Harvard Medical School identified a gene responsible for the heart defect called atrial septal defect (a hole between the upper chambers of the heart) in four families with multiple members affected by heart disease. The same researchers also identified another gene mutation that causes atrial septal defects accompanied by arm and hand malformations (Holt-Oram syndrome).

Researchers appear to be on the brink of discovering the genes that underlie numerous heart defects. They have recently identified several genes that direct development of the embryonic heart in mice. This should greatly improve our understanding of these genes’ human counterparts—and possibly lead to ways to prevent the various heart defects that mutations of those genes may cause.

Heart defects also can be part of a wider pattern of birth defects. For example, more than one-third of children with the chromosomal abnormality Down syndrome (characterized by mental retardation and physical birth defects) have heart defects, as do about a quarter of girls with another chromosomal abnormality called Turner syndrome (short stature, lack of sexual development and other problems). In fact, approximately 10 percent of children with heart defects have a chromosomal abnormality. Children with Down, Turner 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), Alagille (liver and other problems), Marfan (skeletal and eye defects) and Williams (mental retardation) syndromes.

What is CHD?

I had an email conversation with a member of the Mended Little Hearts group this past week, and mentioned that I did not even know what "CHD" or a "Congenital Heart Defect" was until several months after my daughter had been home from the hospital and her heart had been repaired. The other member replied that she had never heard it called "CHD" either, until the last couple of years. Interestingly enough, she is an adult survivor of CHD.

So why is it that we don't know what it is our kids have? We are given a medical diagnosis for missing chambers to underdeveloped (or missing) valves; from narrowed blood vessels to unconnected arteries. We identify ourselves as "a parent of a TGA child" or "an adult with tetralogy of Fallot" - not as part of the larger Congenital Heart Defect Community. Perhaps that is why we are so disconcerted in our efforts to join forces and create an effective awareness campaign.

When I was in the hospital with my child awaiting surgery, I was desperate for information on her condition. I spent hours surfing the Internet for stories of adult survivors, for parents who could relate to the horrors of open heart surgery with their infant, and for inspiration. Never once did I Google "CHD" or "congenital heart defect" (both of which bring up tons of links I could have used!). I looked up "TGA," "Transposition of the Greater Arteries," "open heart surgery" and "pediatric cardiology."

I suggest we start to educate the social workers (who often have extensive interaction with the parents and provide links to support groups) on the importance of being able to identify CHD as being the tie that binds the "broken heart" community together. What do you think? How can we create a better way for newly diagnosed CHD families to find other heart families, websites, resources and information? Send your thoughts to learnaboutchd@gmail.com or feel free to post a comment.

CHD Research (and the need for more of it)

Take a look at these facts provided by the Children's Heart Foundation:

• CHDs are America’s number one birth defect, affecting nearly one out of every 100 births, or 40,000 babies a year.
• CHDs are responsible for one third of all birth defect related deaths, making CHD the number one cause of birth defect related deaths.
• More than 91,000 life years are lost each year in the United States because of CHDs.
• More than 50 percent of all children born with CHD will require a least one invasive surgery in their lifetime. Twenty percent of these children will not survive past their first year of life!
• The cost for surgery alone exceeds $2.2 billion a year!
• CHD research is grossly under funded. Pediatric cancer research is five times higher than CHD research although twice as many children die from CHD each year in the United States than from all forms of childhood cancer combined.
• Research has already made a difference in the lives of thousands of children and their families. In the last decade, death rates for CHDs have declined by almost 30 percent because of the advances made through research. As more children's heart abnormalities are treated, research is needed to meet the needs of CHD patients as they reach adulthood.
  

So where is our unified front? Who will wave the flag for our CHD children? Who applauds and encourages the CHD adult survivors? Where's our national marathon/fundraising event?

Everywhere I look there are pink ribbons, there's a RED campaign, there's red dresses, there's awareness ribbons of every color. When I look for a unified CHD awareness campaign, there is nothing out there. There are many attempts (such as this feeble one) to raise awareness, yet there is not a united voice to raise awareness to the public at large. We need to come together and agree on a way to tackle this problem.

My hope is that the patients, parents, researchers, cardiologists, pediatricians and all others who support CHD awareness can find each other and build bridges. This blog is one of many hundreds of sites out there... let's all find one unified campaign and get together. There are lives that depend on it.

Let's Spread the Word!

Did you know that 1 out of every 100 children is born with a
Congenital Heart Defect?

For the 29 days of February, this blog will be updated every day, each with a focus on creating awareness for this overlooked, but very important health crisis. The blog will feature facts about this sometimes deadly defect, stories of inspiration and courage, and ideas for ways that you can help to spread the word about CHD and the need for public attention, government action and research funding. Throughout the month links will be added to support groups, research, facts and other useful information.

On each of the 7 days of the official CHD Awareness week (Feb. 7-14th, 2008), lists of seven items relating to CHD will be provided. Let's see how creative it can get! Feel free to send in your ideas for lists of 7 (see left-hand column for a few of the list ideas we have started with!).

You can join this grassroots crusade, too. Check out the facts listed to the right and share them in an email or on your blog. Add one of the CHD Awareness logos and a link to your MySpace page, LinkedIn page, FaceBook, blog or wherever you lurk in cyberspace. Better yet, join in the blog-a-thon from February 7-14 and create your own lists of 7.

Send ideas, get inspired and most importantly - SPREAD THE WORD ABOUT CHD!!