Congenital heart defects can be corrected at birth, but what happens next?

No one knows why some babies are born with life-threatening heart defects. Donna Stiener was one of those "blue babies," as they are called, who received pioneering heart surgery at Johns Hopkins Hospital about 60 years ago. Now doctors grapple with how to care for adults such as Stiener who started life with such profound heart defects.

A Baltimore Sun story explains why the heart condition known in the medical world as tetralogy of Fallot presents new challenges for healthcare professionals. "We're learning, and this has opened a whole new field for adult congenital heart defects," Dr. Richard E. Ringel, an associate professor of pediatrics at Hopkins, told the paper. "It's because of the success of surgeons."

The defects associated with tetralogy of Fallot cause a problem with the structure of the heart that changes its blood flow. That's how the National Heart Lung and Blood Institute describes the rare condition it estimates is found in 5 of every 10,000 babies.

It's not known what medical problems may arise in these older patients. Stiener, for example, returned to Hopkins a few years ago to have a heart valve replaced. Doctors hope to develop new guidelines and create a database to track cases that could provide a blueprint for treatment.

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