Twenty-year-old Jack Hurley never felt like anything was wrong with him. He played sports almost from the time he could walk, and on the outside, he seemed perfectly healthy. But he was battling heart disease caused by a congenital defect.
Roughly 40,000 babies are born each year in the United States with congenital heart defects, the Centers for Disease Control and Prevention says, noting that they are among the most common birth defects. Some people, like Hurley, live relatively normal lives despite them.
“I never noticed anything different between me or any of my friends that didn’t have heart disease,” said Hurley, a Philadelphia-area native. “It was just, ‘I have to go to the doctor one extra time of year.’ It was just another thing that I had to live with, it didn’t really impact my life at all.”
By the time he was three months old, Hurley had undergone open-heart surgery for a common form of congenital heart defect called tetralogy of fallot, which affects normal blood flow to the heart. His cardiologist at Children’s Hospital of Philadelphia, Dr. Matthew Gillespie, said because that surgery was successful, Hurley had a remarkable 18-year run without needing anything else.
“The issue that we were running into, now that our patients are surviving regularly into adulthood, is that even when they have successful surgical repair, there are ongoing issues that need to be followed and need to be treated,” said Gillespie.
When he turned 16 or 17 years old, Hurley said, there was talk about getting his valve replaced, to keep blood flowing in the correct direction through his heart. He and his family pushed that open-heart surgery off as long as they could because he was a high school athlete and knew the recovery process would take months.
But in 2019, when Hurley was 18 years old, he took part in the clinical trial of a new technology called the Harmony Transcatheter Pulmonary Valve (TPV), manufactured by the Minnesota-based medical device company Medtronic.
The first minimally invasive therapy to treat patients with a specific type of congenital heart defect, TPV was recently approved by the Food and Drug Administration.
Gillespie said the nonsurgical procedure takes a day to complete and patients typically go home the next day.
“You’re getting the same physiologic benefit, but you’re not really sidelining people for six weeks of recovery, and you’re subjecting them to less procedural risk because it’s a less invasive procedure,” Gillespie said.
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 they have symptoms, because if you’re having symptoms, that means that you may have waited too long.”
But Gillespie said almost all the patients he has treated with the Harmony TPV have said they feel much more energized. With the valve replaced, he said, the heart becomes a more efficient pump, which translates into feeling better and a higher energy level. He added that he hopes technologies like the Harmony TPV will minimize the number of open-heart surgeries people require.
It has been two years since Hurley’s nonsurgical procedure, and like any other patient with a congenital heart defect, he still has yearly checkups. He’s also taking online classes at Penn State and staying active.
“Patients like Jack, 25 or 30 years ago, we used to just say, well, let’s just get them through childhood and into adulthood, but now we’re recognizing that our patients can live a long, productive, happy life,” said Gillespie. “And these new technologies are allowing us to maintain our patients in a less invasive way, keep their hearts healthier for a longer period of time.”
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