By Michelle Durham

PHILADELPHIA (CBS) — For the first time in US history, there are more adults living with congenital heart defects than children.  Advances in modern medicine have allowed children who in years past would have died to survive and thrive.

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And because these folks need care that not all cardiologists are trained to provide, a unique collaboration is now underway between cardiologists at Children’s Hospital of Philadelphia and the Hospital of the University of Pennsylvania.

(Dr. Yuli Kim.  Photo provided)

(Dr. Yuli Kim. Photo provided)

It’s called the Philadelphia Adult Congenital Heart Center.   Medical director Dr. Yuli Kim (right) says, “There is a real vulnerable time period — adolescents are learning to gain independence and going off to college, and this is certainly a time period that we know in the research that patients with congenital heart disease get lost to care.”

Amy Verstappen, president of the Philadelphia-based Adult Congenital Heart Association, has a congenital heart defect herself.

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“I got pregnant in my mid 30s and I didn’t understand that I needed specialized care,” she recalls.  “And unfortunately, neither did my medical team.  I got very ill.”

Verstappen says typical adult cardiologists get six hours of training in congenital heart care, so there is a need for more doctors to specialize in this area.

Dr. Kim says the goal of the new collaboration is to make sure patients don’t fall through the cracks of care as they grow.

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