Congenital Heart Disease is considered to be the most common birth defect, and is a leading cause of birth-defect related deaths worldwide. Despite the fact that CHD affects approximately 1.8 millions families in the U.S., a relatively small amount of funding is currently available for parent/patient educational services, research, and support.Awareness needs to be brought to CHDs not only for all these amazingly strong kids, but also those kids that have now become adults.
Tin Man was born with a CHD known as Transposition of the Great Arteries. He saw his pediatric cardiologist until he was 22 when the doctor retired. After that it turned into a fight to find him a cardiologist. He was always told the same thing. They didn't know how to treat him and weren't comfortable taking him on as a patient.
It wasn't until he was admitted to the hospital for Congestive Heart Failure that he was assigned a doctor. That doctor wasn't comfortable having Tin Man as a patient and made sure we knew that. He tried referring us to UCLA, but they told us he wasn't sick enough to be there.
In 2008 we moved to a smaller town. We had to start all over again to get a cardiologist. Again we were told the same thing. They weren't comfortable and he should go to Stanford, but no one would give us a referral. Again it took him being in the hospital with CHF to get a referral for Stanford.
One of his doctors at Stanford is a pediatric cardiologist that decided to take on adult CHD patients once a week.
He told us that there are so many of these kids growing up, but very few doctors that know how to handle them.
Awareness needs to be brought to CHDs so more funding, research, and more doctors will be available.