People with congenital heart defects may undergo many open-heart surgeries over their lifetimes. According to Gillespie, most of these defects are detected in the uterus by standard ultrasound screening, so that by the time the baby is born the doctors know if there are any heart issues. But according to the CDC, some heart defects may not be detected during pregnancy — some are found either at birth or as the child ages. Some babies seem healthy at first but can still have a congenital heart defect, the CDC says, which is why it suggests newborn screening to ensure babies receive prompt care and treatment.

Although some people with congenital heart defects may experience shortness of breath or swelling and abnormal heart rhythm, Gillespie said that has not been common among his patients.

“They very rarely come in and say, ‘Well, I’m having a lot of symptoms,’” he said. “You want to get them before…

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