Congenital heart disease is the most common birth defect, and traditionally these patients have been managed by pediatric cardiologists. But a new program helps patients transition to adult care.
Doctors say adult congenital heart disease patients are an under-served population, made up of between two to three million people.
Better diagnosis in childhood and more sophisticated surgeries mean children with difficult defects live into adulthood, but cardiologists who do not specialize in adult congenital heart disease do not understand the anatomy of these patients and are not prepared to treat them.
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Derek Bernardi, of Waco, saw multiple cardiologists who didn't have expertise on the congenital heart defect he had repaired three decades ago, called Tetralogy of Fallot.
As an adult, he had a defibrillator pacemaker put in, but later began experiencing heart problems.
"It was at the point where I was prepared to leave. I was going to die. We knew this," said Bernardi.
"I've seen three or four different physicians, cardiologists specifically, but none of them knew what they were doing because of my congenital problems," he added.
He was referred to Dr. Beth Brickner, professor of internal medicine at UT Southwestern Medical Center, a specialist in adult congenital heart disease.
She and her colleagues at UT Southwestern have been working with Children's Medical Center in Dallas to create a program to transition pediatric patients with congenital heart problems to adult care.
"Congenital heart disease is the most common birth defect, and 90-percent or more survive to adulthood. Now there are more adults than there are kids, and this is just not something that most cardiologists are trained to deal with," said Brickner.
Last October, for the first time, physicians could take an exam to become board certified in adult congenital heart disease.
The program under creation will employ physicians who are board certified in adult congenital heart disease as well as support staff.
"The next step is to certify clinics that can take care of adults with congenital heart disease," said Brickner.
Within 30 minutes Brickner figured out that Bernardi had bacterial endocarditis, a potentially lethal heart infection.
He had 14-hour surgery with replacement of the aortic valve, the pneumonic valve and more repair work, saving his life.
"I work normal. I have a full time job. I have kids in my house. Lord's blessed us with a 5- and a 6-year-old that run me ragged and keep me going. I wouldn't be able to keep up with them if it wasn't for her," said Bernardi.