Mending the Hole in His Heart

When Julia Montgomery Stewart was pregnant with her second child, she never imagined that she could pass on a hereditary trait causing her baby to be born with a hole in his heart.

At a six-month checkup, however, baby Alexander’s pediatrician detected a definite heart murmur and made an urgent referral to a pediatric heart specialist at Orlando Health Arnold Palmer Hospital for Children. An echocardiogram showed that her son had a hole in his heart the size of a quarter. Called an atrial septal defect, Stewart was born with the same problem but knew of no one else in her family who had it.

Children born with this issue may not reveal any symptoms, but if left uncorrected, the defect can cause serious heart problems, including heart failure and stroke, when they reach their 30s and 40s. With a hole separating the upper two chambers, the heart must work harder and eventually enlarges and weakens.

“He wasn’t gaining the weight that his older sister had at his age,” recalls Stewart.

Dr. Craig Fleishman, the pediatric cardiologist who diagnosed Alexander’s condition, recommended that Stewart and husband Bryan wait a few years until Alexander had a chance to grow. The parents were presented with two options. One was traditional open-heart surgery, in which the hole would be stitched together — the procedure Stewart underwent as a child to repair her heart. The other, newer option was a minimally invasive catheter procedure that would plug the hole with a device enabling Alexander’s heart tissue to grow over it, forming a solid wall.

Dr. Fleishman recommended the catheter procedure for Alexander because it’s less invasive, poses fewer risks than open-heart surgery and has a shorter recovery period. While doctors at Orlando Health Arnold Palmer perform the procedure on about 50 patients each year, it comes with a small risk of complications. The catheter could break through a blood vessel, or Alexander could develop fluid around the heart after the procedure.

Stewart and her husband did their research, sought second opinions and visited other heart specialists throughout the state. What made the decision harder was that some surgeons recommended only the open-heart procedure for a hole as large as Alexander’s. But Stewart wanted to avoid putting Alexander through such a traumatic procedure if possible. He was smaller and less energetic than other boys his age.

The heart team at Orlando Health Arnold Palmer was confident that the minimally invasive procedure could be done for Alexander, but they wanted his parents 

to feel 100 percent sure about the approach they chose. They met with them and  came up with a plan that felt “just right.”  Dr. David Nykanen would start the procedure with the minimally invasive approach. The surgical team would be able to see if the catheter-device method would work. If they had any doubts, they would cancel the surgery and schedule an open-heart procedure to be done by Dr. William DeCampli. 

“They gave us the choice and they helped us find that special spot — and it worked,” recalls Stewart. 

Within 48 hours of the minimally invasive procedure, Alexander’s parents noticed a major improvement in their 4-year-old son’s energy. “He was much more confident and a lot more outgoing,” says his mother. “We wanted him to be 100 percent before going into kindergarten, and now he is. He has a lot more energy and has grown a lot.”

The family was so impressed with their experience at Orlando Health Arnold Palmer that Stewart delivered her third baby, a little sister for Alexander, right across the street at Orlando Health Winnie Palmer Hospital for Women & Babies. “For me,” says Stewart, “Arnold Palmer Hospital is a place where you can feel comfortable and know that everything is going to work out.”

For more information about Orlando Health Arnold Palmer, visit ArnoldPalmerHospital.com.