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Why Adult Survivors Of Congenital Heart Disease Still Need Specialized Care


Congenital heart disease is a structural defect in the heart that occurs at birth. Advancements in medicine have made it possible for more people with the disease to survive into adulthood.  But few of those adult survivors get the specialized care they still need.

UT Southwestern Medical Center and Children’s Health have partnered on a full program for adults with congenital heart disease.  Dr. Beth Brickner is a Professor of Internal Medicine at UT Southwestern Medical Center.

From Dr. Brickner’s Interview:

Advances in treating Congenital Heart Defects: “We were able to repair simple defects. About half of congenital heart defects are relatively simple problems like a hole in the heart or a blocked valve or a blood vessel. And those were easier to repair even in the early days of cardiac surgery. But some of the really complex problems where there’s only one pumping chamber instead of two, those children often didn’t have good surgical options or we would do a palliative procedure where they try to fix the circulation a little bit, but it wasn’t a real correction - like you’d give some blood flow to the lungs by making a new connection to the lungs. That was a procedure that could be done back in the 40s, 50s and 60s. But now our surgeons can correct or partially repair patients with really complex defects. There’s also catheter-based techniques that are incredibly important to allowing these young people to survive into adulthood.”

Does congenital heart disease have to be managed through adulthood?  “Many patients, their families, their primary care physicians think congenital heart disease is a children’s disease. If you had surgery when you were a child, then it’s finished and you can put it behind you, and for many people that is not true. And for about half the population, they will have a moderate or complex problem that requires lifelong follow-up.”

How do you manage the disease? “Continues visits with the doctor are very important because the way these patients tend to come back into health care often is with a rhythm problem or with what we call heart failure, which means the heart is not pumping adequately, or they could have a stroke or they could have another complication related to their abnormal heart. And sometimes those things can be prevented or, at least, better treated if we’re following them on a regular basis.”

Would a regular cardiologist do or do you need someone who’s trained for congenital heart disease? “Actually, the American Board of Specialties, which is the big governing board for all specialties of medicine, agreed a couple of years ago that these patients deserved a cardiologist like myself who’s had special training or long experience in taking care of patients with congential heart disease, or a pediatric cardiologist who gains experience with adults with congenital heart disease.”

What causes congenital heart disease? “Most of the time there is no obvious cause. It is presumed some sort of environmental insult – that maybe Mom had some sort of illness during a critical part of pregnancy when the heart is forming that caused the heart to form abnormally. There’s a lot of information about what specific genes control the development of the heart, and there’s lot more information about specific genetic abnormalities that may predispose you to have a child with congenital heart disease. But most of the time it is unknown. And most people are the only people in their family who have congenital heart disease.”

For More Information:

Congenital heart disease in adults 

Signs and Symptoms of Congenital Heart Defects 

UT Southwestern Medical Center programs on Congenital Heart Diseases

Sam Baker is KERA's senior editor and local host for Morning Edition. The native of Beaumont, Texas, also edits and produces radio commentaries and Vital Signs, a series that's part of the station's Breakthroughs initiative. He also was the longtime host of KERA 13’s Emmy Award-winning public affairs program On the Record. He also won an Emmy in 2008 for KERA’s Sharing the Power: A Voter’s Voice Special, and has earned honors from the Associated Press and the Public Radio News Directors Inc.