Doctors scramble to keep up with congenital heart disease patients

WASHINGTON — It is one of the true miracles of modern medicine.

In the 1940s, 80 percent of the babies born with defective hearts died before reaching adulthood. Today, thanks to ever-improving surgical techniques and better detection and treatment, 90 percent of patients with congenital heart disease are living long lives.

That success has the medical community scrambling to keep up with an expanding population of adult congenital heart disease patients — now more than a million strong and growing 5 percent each year.

“We have a lot of adults with congenital heart disease, which is a good problem to have,” says Dr. Jane Crosson, a pediatric cardiologist with Johns Hopkins.

She says because of the high death rate in past decades “adult cardiologists never really learned how to take care of these patients, because they didn’t see them.”

So the push is on for additional training. And this year — for the first time — cardiologists will be able to seek board certification in adult congenital heart disease.

It’s a huge issue, Crosson says, because there are concerns that too many congenital heart patients are not seeing an adult cardiologist for routine care.

“A lot of them are doing very well and lead normal lives, but very few of them are completely cured,” she says.

A 2009 study published by the American College of Cardiology says hospital admission for patients with adult congenital heart disease rose 101 percent between 1998 and 2005 — a sign that too many patients treated as children were forgoing cardiac care until an emergency occurred.

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