Building a healthy heart through cardiac fitness

Joao, who has Ebstein's anomaly, poses in New York City. This spring, Joao DeToledo will be stepping onto the volleyball court to play for his high school team for the first time. It will be a proud moment for the high school senior from Somerville — playing a competitive sport is a goal he hadn’t dreamt possible just a few years ago. Though Joao has always loved sports, he was born with Ebstein’s anomaly, a congenital heart condition that, until recently, has forced him to spend a lot of time on the sidelines.

When Joao expressed frustration at not being able to participate in gym and sports as much as he’d like, his cardiologist, Dr. David Fulton, recommended the Cardiac Fitness Program at Boston Children’s Hospital. The program, one of the first of its kind, offers kids and adults with congenital heart disease a chance to exercise in a safe environment.

“Before starting the program, I’d rest as soon as I felt any shortness of breath,” says Joao. “But now, I know I don’t have to stop.”

Getting medical clearance to play volleyball is a testament to how far he’s come in just a few months.

Feeling more confident

Joao’s mom, Lucy, accompanies him to his weekly sessions, and is one of his biggest supporters. “I’ve seen a lot of positive changes in him since he started, and not just with his heart,” she says. “He’s been a lot more confident and a lot happier. It’s been awesome.”

Joao, who has Ebstein's anomaly, works out in the cardiac fitness lab.
Joao works with Jennifer Pymm, one of his exercise physiologists

She credits much of the change in his confidence to the program’s ability to make Joao feel safe when exercising. She says no one encouraged Joao to exercise before because they were afraid of damaging his heart.

“Joao had been having some chest pain that Dr. Fulton assured him was not related to his heart,” says Lucy. But the pain made Joao nervous and he would always stop what he was doing and lie down as soon as he felt it.

“In the cardiac fitness lab, we can watch his heart beating on the monitor while he exercises, and he could see that it’s totally normal even when he feels the pain,” says Lucy. “So now he can push himself to do more because he feels safe.”

Unexpected health benefits

The program has also produced some unexpected benefits. Joao was diagnosed with kyphosis, a forward curve of the spine, at age 11. Neither physical therapy nor years of wearing a back brace helped the condition, and his orthopedist, Dr. John Emans, thought he would need surgery to correct it. But after a few months of cardiac fitness, a back x-ray showed so much progress in correcting his spine that he no longer needs surgery.

Joao, who has Ebstein's anomaly, strengthens his upper body in the cardiac fitness lab.

“I think his muscles were very weak from years of not exercising,” says Lucy. “Now that his muscles are stronger, it’s helping his back, too.”

Every month, his exercise physiologists review his skills to see how far he’s come. His favorite exercises in the lab are riding the bike and doing pushups. He’s worked up to doing two sets of ten pushups and can now hold a plank for a minute.

“He’s really improving — we can see him standing up straighter and feeling more confident,” says Jennifer Pymm, one of the exercise physiologists he works with. “His mom’s support has been really great. The more she learns, the more she can help him when he’s completed the program.”

Lucy and her husband, Marcos, work with Joao once or twice a week at home, and they plan to help him continue his exercise routine once the program is done.

Joao, who has Ebstein's anomaly, and his family pose withMerida at Magic Kingdom.
Joao and his family pose with Merida during a trip to Magic Kingdom

“It’s working really well for me and I’m really happy about it,” says Joao. “Keeping my heart healthy and strong and my back straight means a lot to me. I’m not going to stop.”

A future helping others

Joao will be graduating in June, 2018 and has big plans for the future.

“After the 2016 election, I became really interested in politics and am very passionate about issues like immigration, health care, the tax plan and climate change,” says Joao. These issues have all touched his family, and he also cares deeply about how they affect others.

Joao, who has Ebstein's anomaly, poses with his brothers.
Joao poses with brothers Luis (right) and Marco (front)

He’s already put his passion for politics to work as an intern with Matt McLaughlin, an alderman in Somerville, helping with his reelection campaign. He also hopes to intern with either Senator Elizabeth Warren or Congressman Mike Capuano in the upcoming year.

Joao offers these words of wisdom to other kids with heart disease: “Doing physical activity to keep your heart strong is important. Don’t get discouraged, and never, ever give up.”

Learn more about the Cardiac Fitness Program.