Lifelong treatment for congenital heart disease in adults

Advances in surgery and treatment mean more pediatric heart patients are living into adulthood, where many need follow-up care from specially-trained cardiologists.

Walter L. Sobczyk, M.D., pediatric cardiologist with Norton Children’s Heart Institute, affiliated with the University of Louisville, has treated hundreds of children born with life-threatening heart abnormalities. Thanks to advances in surgery and treatment over the last decades, most of these children are now living into adulthood.

“Some of these heart conditions are very serious, and for a long time these children didn’t survive into adulthood. Now they live into their 40s, 50s, 60s and 70s,” Dr. Sobczyk said.

Norton Children’s Heart Institute has expanded its adult congenital heart disease services so specialized cardiologists can continue to care for these patients as they mature.

“As a senior member of the group, it just became a natural focus of my practice,” Dr. Sobczyk said. “It was a natural interest for me because they were already my patients.”

There are an estimated 1.4 million adults born with congenital heart disease living in the United States, up from fewer than 1 million in 2000. To address this growing need, treating congenital heart problems in adults has become a new medical subspecialty. Physicians receive specialized training to treat these patients who have unique challenges.

“This is a new and expanding concept that’s rapidly evolving,” Dr. Sobczyk said. “We are working on being on the cutting edge of that at Norton Children’s Heart Institute.”

Treatment for congenital heart disease in adults

Before physicians like Dr. Sobczyk focused on adults with congenital heart disease, these patients often were seen by pediatric cardiologists who did not specialize in adult heart issues, or adult cardiologists who didn’t have specialized training in congenital heart disease, according to Dr. Sobczyk.

“The patients spent a lot of time in limbo,” Dr. Sobczyk said. “Many of them did not understand the nature of their conditions and what kind of complications could happen in their 30s and 40s, and wouldn’t come back until they were quite sick.”

Adult Congenital Heart Disease Care

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Adults born with congenital heart conditions need lifelong care and typically experience adult heart issues earlier than those born without heart abnormalities. These include heart rhythm issues, coronary artery disease and heart muscle failure. Adults who underwent heart valve operations as children often need to have those valves replaced.

One goal at Norton Children’s Heart Institute is making sure adolescents with a congenital heart disease understand their condition and the challenges as they get older.

“Babies who survive infant operations can do very well. They can go to school,

get married, start families,” Dr. Sobczyk said. “I have patients who were born with one heart chamber now entering college.”

According to Dr. Sobczyk, as these patients transition to adulthood, Norton Children’s Heart Institute can keep caring for them so they can continue to get the best care for their congenital heart disease.