Nearly one in every 100 babies is born with some type of heart defect, making congenital heart disease the most common birth defect. But thanks to advances in medical care, more than 90 percent of these children now survive well into adulthood.

Because of this, there are now more adults living with adult congenital heart disease than there are children, according to the Adult Congenital Heart Association. In all, there are more than 2 million people of all ages with congenital heart disease in the United States alone. Hundreds are in Kentucky, not knowing they may need specialized care. But a new program of University of Louisville Physicians and Kosair Children’s Hospital 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. Those who have the condition may experience long-term problems, such as difficulty with exercise, disturbances in heart rhythm, infections and heart failure, and will benefit from lifelong medical management. There is also the potential need for additional surgery

Patients can be at high risk for sudden cardiac arrest, stroke and premature death, and their rates of emergency room visits and hospitalizations are higher than the general population. Many have cardiac 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.

“This is a new and growing population of adult patients, and there have historically been few physicians in the U.S. specializing in congenital heart disease in adults,” said Dr. Craig Alexander, an adult congenital heart specialist for University of Louisville Physicians and Kosair Children’s Hospital who is the first physician in Kentucky and among the first in the nation to be fellowship-trained in adult congenital heart disease (ACHD).

“These patients often have a hard time finding doctors who understand their conditions and can care for their unique medical needs.”

With Alexander and a team of dedicated specialists, UofL Physicians and Kosair Children’s Hospital provide the care and resources in Kentucky and Southern Indiana for adult congenital heart care, helping patients live longer, healthier lives. The team works with the patient’s regular cardiologist to provide both clinical and procedural care for adults, including advanced diagnostic testing and cardiac imaging, interventional catheterizations, including advanced device implantation and complex arrhythmia therapies, as well as complex surgical procedures.

For patients, the program can mean living healthier, longer lives.

“I was diagnosed as having a bicuspid aortic valve stenosis when I was 5,” Hannah Reed said. “After I turned 16 and everything was fine; I stopped seeing a cardiologist.”

Bicuspid aortic valve stenosis means the aortic valve of the heart only has 2 leaflets instead of 3. The aortic valve regulates blood flow from the heart into the aorta, the major blood vessel that brings blood to the body. With only 2 leaflets, the abnormal valve can leak or become narrow, causing the heart to pump harder requiring medications, cardiac catheterization and/or other minimally invasive or surgical procedures.

Reed is an example of the kinds of patients now finding their way to Dr. Alexander.

“When I became pregnant, several referrals brought me to Dr. Alexander, who has helped me through my baby’s birth. If I want to have more children, I’ll need closer monitoring and possibly even a procedure to open the valve.”

The UofL Physicians adult congenital heart program is co-directed by Alexander and Dr. Walter Sobczyk, who has been treating ACHD patients for more than 25 years. Alexander recently joined the UofL Physicians staff from Baylor College of Medicine/Texas Children’s Hospital in Houston.

In addition to Louisville, pediatric cardiologists with UofL Physicians travel to eight rotating sites across the state to see patients who cannot easily make the trip.

To refer a patient to the UofL Physicians adult congenital heart program, call 502-585-4802. To connect with the Kosair Children’s Hospital Heart Center, call 502-629-6000.

For more information on the program and adult congenital heart disease, visit the UofL Physicians web page at www.uoflphysicians.com/adult-congenital-heart-disease. For more information on the Kosair Children’s Hospital Heart Center, visit https://kosairchildrenshospital.com/Pages/congenitalheartservicesforadultpatients.aspx.

About University of Louisville Physicians

University of Louisville Physiciansisthe largest multispecialty physician practice in the Louisville region, with nearly 600 primary care and specialty physicians in more than 78 specialties and subspecialties. Our doctors are the professors and researchers of the University of Louisville School of Medicine, teaching tomorrow’s physicians and leading research into medical advancements.

About Kosair Children’s Hospital

As Kentucky and Southern Indiana’s only full-service, free-standing pediatric hospital, Kosair Children’s Hospital, along with its predecessor hospitals, have cared for children for more than a century without regard to their families’ ability to pay. The hospital also is an advocate for the health and well-being of all children. The 267-bed hospital is the region’s only Level I Pediatric Trauma Center and serves as the primary pediatric teaching facility for the University of Louisville School of Medicine. Specialists offer comprehensive pediatric care including a full range of services for congenital and acquired heart disease, cancer care, neurosciences, spine and orthopaedic care, and neonatal care. In 2007 and 2012, Kosair Children’s Hospital received the prestigious Magnet designation recognizing excellence in nursing from the American Nurses Credentialing Center. More information is available at KosairChildrensHospital.com.