Atrial Septal Defect: Jacob's Story

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Jacob has a passion for baseball, basketball and golf. At 16, he is able to play at a high level and live a healthy life thanks to the team at Children’s Hospital of Philadelphia, where he had heart surgery three years ago.

Jacob with his golf clubs Jacob, like all school athletes, is required to have a physical exam every year. When he was 13, his mother, Jenny, accompanied him to his annual checkup before the start of the spring sports season. “His pediatrician told us he heard something when listening to his heart,” she remembers. “He said when we had time, we should see a cardiologist. I wasn’t super concerned.”

But she did make an appointment with a cardiologist, who did an echocardiogram and additional testing to get a clearer understanding of what was happening with Jacob’s heart.

“He told us there was a huge hole in Jacob’s heart,” says Jenny. “I was stunned.” Jacob had shown no signs of illness. He’d always been a strong, active child, and even now he seemed perfectly healthy.

A diagnosis: atrial septal defect

The cardiologist brought his partner in to review the readings and images, and both agreed that the problem was serious. Jacob had an atrial septal defect (ASD), an opening in the tissue between the heart's upper chambers — and it was a large opening.

They recommended that Jenny and her husband, John, bring Jacob to Children’s Hospital of Philadelphia (CHOP). “I told Jacob, ‘You have a hole in your heart, and so you can excel and be the best you can be as an athlete, we are going to find a doctor who can fix it,’” remembers Jenny.

Two weeks later, Jacob was examined at CHOP by Jonathan Rome, MD, an attending cardiologist with special expertise in diagnosing and repairing heart defects using a nonsurgical procedure called catheterization. Dr. Rome is Director of the Cardiac Catheterization Laboratory in CHOP’s Cardiac Center. He confirmed the diagnosis of ASD and scheduled Jacob for a catheterization procedure to more closely examine his heart and close the hole if possible.

That procedure was done in March. Unfortunately, the large size of the hole prevented Dr. Rome from closing it via catheterization. He explained that Jacob would need open-heart surgery.

Life-changing cardiothoracic surgery

Jacob was then scheduled for open-heart surgery with Stephanie Fuller, MD, an attending surgeon in the Division of Cardiothoracic Surgery.

“We were nervous,” says Jenny. “I was a basket case."

But the moment I met Dr. Fuller, I felt that my son was in the most capable hands. She’s energetic, reassuring and clearly good at what she does..

The procedure was successful, and Dr. Fuller was able to close the hole.

Jacob was up and walking the day after his surgery. He spent three more days in the Hospital and two weeks recovering at home before he felt strong enough to go back to school.

Through the rest of that spring and over the summer, Jacob slowly regained his strength. As his first step back into athletic activity, he would dribble a ball around the house. Then he started shooting baskets, running on a treadmill, stretching and jumping.

“He was very smart about it,” says Jenny. “He listened to his body. He didn’t push himself past his limits, but he pushed himself hard. If anything, it made him want to work harder. He was determined to make the basketball team that fall.”

“It hurt for the first month,” says Jacob. “Then, when I started exercising, I could feel that I had more stamina. I felt stronger. My breathing was a lot better.” Thinking back to before the operation, he realized that he had often become overly tired running up and down the court. He had always been able to play all four quarters, but it had been a struggle.

Jacob’s determination pays off

That fall, Jacob made the high school basketball team as a freshman. When the season began in November, he was a starter. When the basketball season ended, he moved on to baseball and golf. Now a junior, he continues to play all three sports.

Jacob’s family and coaches are amazed at his journey and what he’s accomplished. “The coaches are amazed that he’s able to do what he does,” Jenny says. “I cry when I watch him run up and down the court.”

Jenny is extremely grateful for the care Jacob received at CHOP. “Dr. Fuller has been so wonderful,” she says.

When I reach out to her on the anniversary of the surgery or when he does something great, she’s so genuinely happy to hear about him. She’s an angel. She saved my child. She gave him his wings to fly again.

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