Member Profiles
CHERYL
Heart Disease touches my life through my one year old daughter, Madison. She was born with complex, congenital heart defects because of a genetic deletion called Alagille Syndrome.
Madison's was diagnosed at birth with Tetralogy of Fallot, Pulmonary Atresia, VSD,and MAPC's.
When my little girl was just six weeks old, she had open heart surgery. By 11 months of age she has had that surgery & 5 interventional cardiac catheterizations. She had a stent placed in each of her pulmonary arteries when she was six months old. She has endured multiple angioplasties of her pulmonary arteries & lung arteries.
I feel so terrible that she has had to go through so much in her first year of life. She still has more surgeries ahead & probably will throughout her life.
What most people don't realize is that there are many children like Madison living in our communities. Congenital Heart Defects are the #1 birth defect which occur in 1 in 100 babies born.
I hope everyone realizes that Heart disease isn't just an adult problem. Little babies are having surgeries and catheterizations every day too. I feel more research & attention needs to be focused on prevention and cure for the #1 birth defect so that children can just be children- and not have to deal with extremely invasive surgeries & hospital life in general.
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