Childhood heart repairs may not last a lifetime

Limited specialists
Even if they want ongoing care, there are only about 100 cardiologists nationwide specially trained in adult congenital heart disease. Considering one in 150 babies is born with a heart defect, a soon-to-skyrocket new population of adult patients will compete for limited specialists.

“There’s a setup for people to fall between the cracks,” says Dr. George Ruiz of the Washington Hospital Center, who with Kuehl runs the new Washington Adult Congenital Heart Center — and is combing through boxes of dusty surgical records dating to the ’70s, hoping to track down now-grown “miracle babies” who don’t know their repairs may not last for life.

There are new moves to help:

• Williams is co-writing new guidelines, due later this year, on how to treat adult patients. The advice is aimed both at cardiologists and at other doctors, such as obstetricians, whose care decisions may be complicated by heart abnormalities.
• Cardiologists and patient advocates are pushing for funding for the National Institutes of Health to open the first registry to track long-term health. A registry could help uncover which of 35 different cardiac defects are most likely to cause late-in-life problems, determining who needs specialty care and who will do fine with a general physician’s checkups.

“I don’t mean to say we’re going to die or do poorly,” stresses Amy Verstappen of the Adult Congenital Heart Association, the advocacy group. “But we are likely to need reoperations, likely to develop things like heart arrhythmias where we’re going to need additional care. Better to get it sooner than later.”

For now, symptoms are what send many patients back for heart care, but they can be subtle, easy to dismiss.

Deepa Sinha of Herndon, Va., is a classic example. She had a complex but common defect called tetralogy of Fallot repaired at age 8, a final checkup around 21, and “went on with my life.” Then weakness hit in her mid-30s.

Tetralogy repair frequently spurs a leak in the pulmonary valve that over time damages the heart’s right ventricle, making it hard to exercise and risking a fatal irregular heartbeat. Sinha didn’t know that. For a year she attributed worsening fatigue to being out of shape and the demands of two kids and a career — until the day she couldn’t lift her 4-year-old.

“Life has totally changed,” she says after getting a new valve last year. “I should have gotten this done years ago, if I had known.”

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