Counting my blessings: living life to the fullest as an adult congenital heart survivor

Courtney Narcisse is a 41-year-old thriving adult who considers his life a blessing and enjoys each day to the fullest. Courtney was born with an atrioventricular (AV) canal defect, a combination of several closely associated heart problems that resulted in a large hole in the center of his heart. He is one of more than 1.4 million U.S. adults living with congenital heart disease (CHD).

“My parents noticed I had shortness of breath a lot,” said Courtney. “When they took me to the doctor to see what was wrong, that’s when they found out I had a bad heart condition. When I was four years old, I had my first open-heart surgery to patch a hole in my left ventricle valve.”

Patients with AV canal defect have a large hole in the septum wall that separates the right and left sides of the heart. As a result, this hole allows excess blood to flow to the lungs making the heart and lungs work harder. If left untreated, this condition can cause heart failure and high blood pressure in the lungs. Patients with this congenital heart defect also have problems with their heart valves. The tricuspid valve (right side of the heart) and the mitral valve (left side of the heart) that regulate blood flow between the upper (atrial) and lower (ventricle) chambers of the heart are formed abnormally during fetal development, causing one or both valves to leak.

Luckily, Courtney’s open-heart surgery at the age of four held up strong for many years. He did not have any heart complications after his surgery until he was in his late thirties and began having shortness of breath. He later found out that his left valve was not closing properly.

“I just got very short winded all the time,” said Courtney. “When the symptoms just did not go away, I went to my doctor to get it checked out and learned that something was wrong with my left heart valve. My doctor referred me to the Adult Congenital Heart Disease Clinic at Children’s Hospital New Orleans, where I was introduced to another specialist. After a comprehensive evaluation, it was determined that I would need another surgery. Subsequently, I was referred to Dr. Timothy Pettitt, who became my heart surgeon.

Pettitt confirmed Courtney had a moderate degree of blood regurgitation in his left AV valve (mitral valve) between the upper and lower left chambers of his heart. This valve usually deteriorates over time after childhood repair due to the higher blood pressures on the left side of the heart. A normal mitral valve has two leaflets. In AV canal type defects, when the holes between the atria and ventricle are closed, the mitral valve will have three leaflets. This cleft causes blood to regurgitate backwards through the valve and into the atria, which over time causes dilation of the left heart and elevated pressures in the lungs. This can lead to symptoms of congestive heart failure, like shortness of breath and fatigue. On Feb. 7, 2022, Courtney had his second heart surgery at Children’s Hospital to close the cleft between the two leaflets, recreating a two-leaflet mitral valve.

“We went back through Courtney’s previous sternotomy incision and dissected out the heart and great vessels from scar tissue which develops after previous heart surgery,” said Pettitt. “After we placed him on cardiopulmonary bypass and stopped his heart, we opened the left atrium and closed the cleft with multiple, interrupted, non-absorbable sutures. After his open-heart surgery, there was minimal residual left valve regurgitation and Courtney had an uneventful recovery.”

“I thank Dr. Pettitt and his team for repairing my heart valve,” said Courtney. “They explained everything to me in simple terms about what to expect before and after surgery. After my heart surgery, I am doing great, and I can breathe better. I am glad that Children’s has a center to care for adults like me with congenital heart problems.”

As part of his follow-up care, Courtney sees his cardiologist Dr. James Krulisky in Baton Rouge to monitor his heart and valve repair. Dr. Krulisky, who is affiliated with Children’s Hospital, consults with Dr. Scott Macicek for any ACHD concerns Courtney may encounter in the future.

Because of the many advances in medical care, people born with congenital heart defects (CHD) are now living into adulthood which underscores the importance of programs focused on this specialized care. The mission of the Adult Congenital Heart Services within The Heart Center at Children’s Hospital New Orleans is to provide comprehensive care for the adolescent and adult with congenital heart disease regardless of age or illness severity. The clinic offers a complete range of diagnostic and treatment services for patients with adult congenital heart disease, including minimally-invasive procedures.

To learn more bout the Adult Congenital Heart Program at Children’s, please see:

Adult Congenital Heart Program | Children's Hospital New Orleans (chnola.org)