Sunday, February 13, 2005
Heart Defects are the number one birth defect, affecting one in every 100 babies, and is a leading cause of birth-defect related deaths worldwide. Sometimes a defect is diagnosed in utero, some are diagnosed at birth, and sometimes a diagnosis is not made until days, weeks, months, or years later.
The severity and treatment of CHDs varies. Some are mild and are monitored by occasional visits to a pediatric cardiologist. Others can be treated with medications or repaired with surgery or a cardiac catheterization. More complex heart defects, including the one my son Riley has, require several surgeries and will never be "cured."
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
(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.)