One in 100 kids is born with a heart defect. Think about that for a minute. How many kids do you know? How many kids are in your child's preschool? Your kid's class at school? In your son's art class? Your daughter's music class? At the childcare center at the gym? Chances are you know a family who has been affected by a heart defect.
My son Riley was born with a complex heart defect--a single ventricle heart with dextrocardia, heterotaxy, TAPVR, and asplenia. In plain English, that means that instead of having four chambers, his heart has only one. It is also on the wrong side of his chest, and many of his organs are in the wrong place. As part of his complex condition, he was also born without a spleen, which is very important organ for fighting infections (who knew?). There is no fix for his heart. Rather, a series of surgeries have created a way for his blood to move oxygen around his body.
Five open-heart operations, several hospitalizations, and a couple of scares later, we are not done dealing with heart-related issues. Really, for kids with heart defects as complicated as my son's there is no fix. There are ways to stabilize him. There are ways to help him life a normal life for a while. But his life, and our lives will never be normal.
What can you do? Donate to research institutions and organizations that provide support and financial assistant to families. Here are a couple I recommend:
• Lucile Packard Foundation for Children: specify pediatric cardiac research and care
• UCSF: specify pediatric cardiac research and care
• The Congenital Heart Information Network
• The International Children's Heart Foundation
(I do not recommend the American Heart Association because only 25 cents of every dollar donated actually goes to research. And no one at the AHA has been able to give me an answer of how much of that research money goes to congenital or pediatric heart research.)
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