Once only for children, congenital heart disease now affects more adults.

Published: February 17, 2016 | Updated: October 13, 2022

When Hannah Reed was 5, her pediatrician listened to her heart and heard something abnormal. A visit to Robert Solinger, M.D., a now retired pediatric cardiologist with University of Louisville Physicians, resulted in a diagnosis of bicuspid aortic valve stenosis, a congenital heart disease.

The aortic valve regulates blood flow from the heart into the aorta, the major blood vessel that carries blood to the body. Bicuspid aortic valve stenosis means the aortic valve only has two cusps, or flaps, instead of three. With only two flaps, the abnormal valve can leak or become narrow, causing the heart to pump harder. The condition requires medications, heart catheterization and/or other minimally invasive or surgical procedures to correct.

Reed continued having routine checkups and tests every year but stopped going after she turned 16.

When she became pregnant at age 26, her midwife directed her to see a vascular specialist, who then referred her to a cardiologist. That’s when she found Craig H. Alexander, M.D., a congenital heart disease specialist at the Norton Children’s Hospital Heart Center and U of L Physicians, who could help Reed manage her adult congenital heart disease (ACHD).

Nearly one in every 100 babies is born with some type of heart defect, making congenital heart disease the most common birth defect. Thanks to advances in medical care, more than 90 percent of these children now survive well into adulthood. In fact, more adults live with congenital heart disease than children, according to the Adult Congenital Heart Association. In all, more than 2 million people of all ages have congenital heart disease in the United States. Hundreds in Kentucky alone do not even know they may need specialized care. But a new program of U of L Physicians and the Norton Children’s Hospital Heart Center fills the gap in care with a statewide network of specialized services.

“Congenital heart disease is a lifelong problem — even if a defect is successfully repaired during childhood,” Dr. Alexander said. He’s the first physician in Kentucky and among the first in the nation to be fellowship trained in adult congenital heart disease.

“Those who have the condition may experience long-term problems such as difficulty with exercise, disturbances in heart rhythm, infections and heart failure,” he said. “They also have a potential need for additional surgery and will benefit from lifelong medical management.”

Patients with ACHD are at high risk for sudden cardiac arrest, stroke and premature death, and they have more emergency room visits and hospitalizations than others. In addition, many have heart issues that arise during pregnancy. All of these require monitoring by a specialist who understands the unique needs of an adult with congenital heart disease.

“I was really worried about how my heart would do with childbirth,” Reed said. “But Dr. Alexander had a team there to help me. He calmed me down and walked me through everything.”

Reed was able to deliver a healthy baby boy.

“If I want to have more children, I’ll need closer monitoring and possibly even a procedure to help my heart,” she said.

And the Norton Children’s Hospital Heart Center and U of L Physicians team will be there for her.

“This is a new and growing population of adult patients, and historically there have been few physicians in the U.S. specializing in congenital heart disease in adults,” Dr. Alexander said. “These patients often have a hard time finding doctors who understand their condition and can care for their unique medical needs.”