CHDs.... Did You Know?

This week is Congenital Heart Defect Awareness Week.  Before Zachy was diagnosed just a year and a half ago, our family knew very little about CHDs.  When my obstetrician uttered the words "heart defect," I immediately had a sense of hopelessness.  I feared there was nothing that could be done other than hold and comfort our newborn, dying son.  Wow, were we uninformed!  It is true that many, many children die from congenital heart defects every year.  But many more go on to be treated and live near "normal" lives, thanks to recent advances in medicine and surgical intervention.  Please help us to spread CHD awareness, and pass this information on to at least one other person:

  • CHDs are the #1 birth defect and the #1 cause of infant death related to birth defects. 1 in every 100 babies born will have a CHD (1 in every 800-1000 babies born has Down Syndrome).

  • 1 in 10 of those born with a CHD will have a fatal defect.

  • In the US there are nearly twice as many deaths due to CHDs than that of all forms of childhood cancers combined. Yet there is 5 times more research for pediatric cancer than for CHDs.

  • The cost of inpatient surgery alone for CHDs exceeds 2.2 billion dollars per year.

  • There are approximately 35 known Congenital Heart Defects.

  • Causes for CHDs are still being studied. While there is no known definitive cause, it is said that both genetics and environmental factors can play a role. Scientists have actually identified over 100 mutations that are directly linked to the heart.

  • There is no known cure for CHDs. However, the mortality rate after surgery has significantly decreased in the past 20-30 years. On average it is about 5% compared to the 30% it was. At the same time, the rate of incidence of CHDs has remained unchanged.

  • With advances in medicine, many of those born with a CHD will have their first and sometimes only corrective surgery before age 2.

  • Many of those living with a CHD go on to lead normal to near normal lives. Those with complex CHDs will also go on to lead longer and more active lives than before. Most will have some physical limitations, but almost all learn to move pass them.

  • Only about 30% of the children who need a heart transplant receive one in time.

  • About 40,000 units of blood are used every day yet only about 5% of the adults, the only ones who are eligible to donate blood, do so. Someone needs blood every three seconds in the United States; that someone is often one of our heart children.
Education is the first step in helping these children live happier, healthier lives!

Supporting heart families is another way you can help.

Last summer, we received travel assistance for Zachary's second surgery through the Spencer Fund.  Spencer was a little boy who, sadly, lost his battle with a congenital heart defect.  In his memory, a fund was established to provide assistance to heart families for the costs of treatment that insurance doesn't cover.  If you would like to support the fund, I would invite you to visit this website.  Please don't feel obliged, for there are many, many ways you can help make the future bright for these children and their families.  But I do urge you, this week in particular, to educate yourself, spread awareness, and choose one way you will make a difference for those living with CHDs.

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