Adults born with heart defects need specialized care

As many as 1 million U.S. children and 1.4 million U.S. adults are living with congenital heart defects — abnormalities in the heart that are present at birth. Some defects are mild, and some so complex that they may require many surgeries over a lifetime. A person has congenital heart disease for their entire life, even if surgical repair is done in childhood.

Congenital heart disease doesn’t mean a child can’t lead a healthy, active life. It does mean the child needs to see a congenital heart specialist regularly and, as the patient ages, transition to an adult congenital heart specialist who understands their medical history.

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“A typical cardiologist who cares for adults has had training in acquired heart disease, and not necessarily in cardiac birth defects in children and how they impact the heart as the patient grows,” said Melissa L. Perrotta, M.D., assistant medical director of adult congenital heart disease (ACHD) for Norton Children’s Heart Institute, affiliated with the University of Louisville.

Dr. Perrotta is a self-proclaimed “cardiology supernerd.”

During medical school, she saw her first patient with ACHD. The patient was in her early 20s and was “blue as a blueberry,” according to Dr. Perrotta. The puzzled adult cardiologist asked for a consultation with a pediatric cardiologist, who drew diagrams of the patient’s heart anatomy.

“Listening to that patient’s heart was so different — a cacophony of murmurs I’d never heard before,” she said. “I thought she was fascinating. All of these different teams were working together to help her, but there was no one person who could address all of her needs. I thought, ‘Wouldn’t it be neat to be that person?’”

That’s why it’s so important for kids with congenital heart disease to continue their heart care as adolescents and adults with a physician specially trained in their unique needs.

To Dr. Perrotta, every person with ACHD is a “masterpiece of medicine.” She enjoys caring for their unique challenges — from complex, multisystem organ issues to social and mental health concerns.

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