Adult Congenital Heart Disease

This information is useful for children and adults
Mid adult male patient describing a chest pain to his doctor, possibly because of adult congenital heart problems

Credit: Getty Images

If you are an adult with congenital heart disease—a problem with the heart’s structure or function that is present at birth—your chances for an active, healthy life are better than ever. Much of the credit goes to dramatic improvements in the care of childhood congenital heart disease that has helped people live well into adulthood.

But while childhood surgeries and other treatments are making a significant difference, they don’t cure adult congenital heart disease. Even when adult survivors have been treated and feel healthy, new issues can surface, so it’s important to continue care throughout life.

“Adult congenital care is certainly a growing part of the cardiology landscape today,” says Robert Elder, MD, director of Yale Medicine’s Adult Congenital Heart Disease Program. One of his goals is to help patients make a smooth transition from pediatric to adult care, so they won’t fall into the 40 to 60 percent of patients who experience a gap in specialized care. Those who don’t receive ongoing, uninterrupted care for this type of heart condition are at increased risk for developing a complication and needing an urgent intervention, such as heart catheterization or surgery.

“When we are monitoring a patient regularly and are aware of symptoms as early as possible, we often can address problems before they even start or at least limit complications,” Dr. Elder says.

Clinical Trials

New treatments for many conditions are tested in clinical trials, which ultimately bring lifesaving new drugs and devices to the patients who need them most. By participating in a clinical trial, you may get access to the most advanced treatments for your condition, and help determine their benefits for future patients.