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COLUMBUS, Ohio – The health care success behind the survival of hundreds of thousands of children with congenital heart disease has posed a problem for those very survivors: a lack of specialists trained to care for adults with heart disease dating to childhood.

Working collaboratively, the Ohio State University Medical Center and Columbus Children’s Hospital are among a handful of centers in North America currently solving that problem by offering dual training of future specialists in both pediatric and adult heart care within a single cardiovascular medicine fellowship program.

“Pediatric cardiologists get these patients to adulthood, but then most adult cardiologists have not been exposed to the different forms of congenital heart disease and are not trained to care for this growing and complicated population,” said Dr. Curt Daniels, director of the joint adolescent/young adult heart disease clinic at both OSU Medical Center and Columbus Children’s Hospital and assistant director of the cardiology fellowship program. “It has created a gap in care for these patients.”

An estimated 1 million adults are living with congenital heart disease in the United States, and Daniels estimates that only a dozen or so U.S. physicians currently specialize in their specific medical needs.

Daniels, in fact, was the first physician in the country to be board certified in both pediatric cardiology and adult internal medicine following his training at Ohio State and Columbus Children’s Hospital. OSU Medical Center and Columbus Children’s then partnered to develop a program to care for these patients over the entire course of their lives and to train additional specialists in pediatric and adult congenital heart disease.

Because there are hundreds of different types of congenital heart defects, Daniels notes, it is difficult to specify all the ways these patients differ from adults who acquire heart disease later in life. But among the components that require specialized training are the anatomy of the heart itself, which often differs in adults who were born with an abnormal heart when compared to the heart that becomes diseased with age; genetic factors in some cases of congenital disease; and the pulmonary complications that can arise in many patients who survive the childhood illness. In addition, many congenital diseases involve multiple problems and not a single defect of the heart.

An additional complication is the unpredictable nature of their heart disease associated with living longer. These patients develop heart failure, rhythm problems and valve disease, and require specialized care to improve their quality of life. Just 30 or 40 years ago, survival rates were poor for children born with heart defects. Now, at least 90 percent of children born with congenital heart disease are expected to live to adulthood, Daniels said.

One other difference: Physicians now know that adults with congenital heart disease ideally are monitored regularly to maintain their heart health, but under the current health care structure they lose access to a specialist when they turn 18 and aren’t necessarily inclined to maintain monitoring unless they become ill. The gap in care becomes particularly pronounced when an adult with congenital heart disease becomes acutely ill and has few specialists to choose from.

“We’re still finding out more about what kinds of problems these patients are likely to experience,” Daniels said. “From an academic standpoint, there is a lot of interest in this subspecialty because there is still so much to learn.

“What we do know, though, is that as these patients reach adulthood, if they’re treated in a disciplined and organized manner by a dedicated staff with specific expertise, they will have an improved quality of life and a longer life,” he said.

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