I am not a doctor nor do I profess to have a background in Medical Education. I am a parent of a child with a Congenital Heart Defect and my "mission" is to make sure our young athletes, many who have undiagnosed heart conditions, are protected and saved.
What I want to do with this site is make everyone more aware that undiagnosed congenital heart defects kill approximatly 25-30 young men and women athletes here in the US each year. The numbers are bigger when you take info in from other parts of the world.
We need to get awareness into our school Phys. Ed programs make the administration and coaches more aware. We need to fight for proper screening, physicals and equipment.
Whenever a child, who has been diagnosed with an "innocent heart murmur" decides to participate in team sports such as baseball, basketball, football, soccer and hockey, their personal physician should be asked to perform an Echocardiogram on them to rule out any underlying heart defects. This is a painless test, takes about 1/2 hour and can spot defects that an EKG or a regular physical exam can't.
Any parent or physical education teacher who views this site and would like to participate can contact me at my email address below.
I am currently in the process of putting a support group together here in NE PA. There is a definate lack of support for families who are new to the CHD diagnosis. It's a very scary future, one full of unknowns, and by getting people together who are exploring this future, we can help each other along. When Mike was newly diagnosed we felt very alone for the first few years. Then, on the internet, I found some good groups (listed below) for support. It helps to know someone else has been there. Contact the email address below if you are interested or need to find a support group. I know of a few in the eastern US.
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My Favorite Web Sites
on line support group for parents who have CHD children
National organization to create a database for CHD
Congenital Heart Defects Support Group
Long QT Syndrome and SADS
Adult CHD site
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