Eighteen-year-old Antonio – diagnosed in utero with hypoplastic left heart syndrome – still remembers visiting Dr. Rychik, MD, Director of the Fetal Heart Program and the Fontan Rehabilitation, Wellness, Activity and Resilience Development Program (FORWARD) at Children’s Hospital of Philadelphia (CHOP) throughout his childhood. He also remembers that from about the age of 6, he would ask Dr. Rychik the same question at each visit: “Can I play football?” And every time he asked, the answer was no.

Until it wasn’t.

Like most children born with hypoplastic left heart syndrome (HLHS) and other single ventricle heart defects, Antonio underwent a series of reconstructive open-heart surgeries as an infant and toddler in which his heart and circulatory system were reconfigured. This is called staged reconstruction, which results in the heart functioning like a one-sided pump with two chambers, no longer receiving deoxygenated blood from the veins. Instead, this blood flows directly to the lungs. The heart receives oxygenated blood from the lungs and pumps it to the body. This is called a Fontan circulation.

Dr. Rychik has cared for Antonio since before birth and ever since. “I remember asking him about my heart,” says Antonio. “Even though I was young, I wanted to know about my condition. He printed out a big diagram to help me understand. I always appreciated that.”

However, starting around first grade, Antonio had a different question for Dr. Rychik, the same question he would have for years. Antonio had watched his first football game with his dad and was hooked.

“I learned everything about the Giants,” says Antonio. “I knew all the players’ names. More than anything, I wanted to play.”

However, Antonio’s care team and his parents agreed that football was not a safe choice for the energetic little boy. While physical activity is encouraged for most patients with congenital heart disease (CHD), football and other contact sports come with a higher level of risk for children with Fontan circulation.

Many children like Antonio take an anticoagulant to thin the blood and prevent clotting. This means an injury that might be very well tolerated in someone without CHD could cause significant bleeding for Antonio. In addition, the rigor of excessive weight training typical in a sport like football could be a problem for Antonio.

These reasons didn’t sway Antonio from his football dreams, and he became disheartened. “He started to feel like he was different from his peers,” says Antonio’s mom, Ava. “We worried about that. You don’t want to tell your child they can’t follow their passions.”

A creative approach

Even though he couldn’t play tackle football, Antonio remained active throughout middle school, playing several sports, including baseball and other activities. As high school approached, however, Antonio worried that his baseball abilities wouldn’t meet varsity standards at the prep school where he would soon be transferring. He also knew that playing sports would help him make friends at his new school. So, he got creative.

Having never lost his interest in football, Antonio began to research the kicker position. He knew that kickers don’t often get tackled, and there are penalties to protect them. “I knew if I wanted to play bad enough, I could find a way to do it.”

Antonio presented his idea to Dr. Rychik and Katie Dodds, RN, MSN, CRNP, Clinical Program Manager of the FORWARD Program. The FORWARD team’s philosophy is to do everything possible to create the best quality of life for children and teens with Fontan circulation. Because doctors now know that physical activity is greatly beneficial to people with Fontan circulation and because sports are important to many teens, the FORWARD team makes personalized recommendations about participation in specific sports based on the interests and condition of each patient. The team carefuly reviewed Antonio’s case for all the risks and benefits, and to his surprise, agreed to let him participate. 

Says Ava, “They knew how important it was to Antonio’s mental health to pursue this passion. He’s not defined by his HLHS. He’s a young man with dreams and aspirations. We are very thankful for that. It has had a huge impact on who Antonio is now.”

Armed with specific guidelines that he would need to follow on the field and in the weight room, Antonio began to train for the goal he’d had since elementary school.

Up for the challenge

While Antonio knew the game of football inside and out, he’d never actually played it, and he had zero kicking experience. His parents hired a local kicking coach to train him. When the COVID-19 pandemic derailed in-person training, Antonio practiced on his own.

“Every single day,” he says. 

Adds Ava, “even in the kitchen.”

Still, when summer training camp began, Antonio was terrified. “Some of the kids were huge,” he says. “I was a 5’5’’ 14-year-old with no football experience. I knew how to kick, but I needed to learn how to be on a football team.” And that would only come with time.

Junior year, Antonio made varsity and was eventually even voted a Top Ten Kicker in New Jersey. 

“It was the most fun I’ve had playing a sport in my entire life,” he says. “That’s when I knew I wanted to play in college.”

A medical scare the summer before senior year, however, threatened to throw a wrench in Antonio’s future plans. 

On two separate occasions, he experienced a supraventricular tachycardia (SVT) – or rapid heartbeat — after practice. “I was woozy, light-headed and felt sick,” says Antonio. “My heart was racing.”

At CHOP, Antonio was treated by Maully Shah, MBBS, Medical Director of CHOP’s Electrophysiology and Heart Rhythm Program. Because Antonio had experienced two SVT episodes and would soon be going off to college, Dr. Shah recommended a catheter ablation to permanently eliminate the problem. In May 2024, Antonio underwent a successful ablation and has had no issues since. 

A dream fulfilled

Antonio wrote about his passion for football and his experience with CHD for his college essays. His football dreams came to fruition when he was accepted into Franklin & Marshall College as a special teams kicker. 

Antonio’s parents were initially worried that a college football coach might not be as understanding of their son’s physical limitations as his high school coaches had been. “Nurse Dodds wrote a very detailed letter about his condition,” says Ava. “She gave very specific guidelines about what he could and could not do. When he was evaluated by the college’s doctors, he was cleared to play with no problem.”

The FORWARD team also spoke with Antonio about how important it would be for him to take extra special care of his health in college. “My medical scares have made me more aware of my health,” says Antonio. “I’m careful about what I put into my body and how I take care of myself.”

In November 2023, Antonio was invited to speak at the American Heart Association Conference. The topic was about mental health in patients with CHD. 

“That was a really cool moment in my life,” says Antonio. “I was able to talk about all aspects of my story and how impactful it can be when cardiologists find ways to let kids be kids.”

Antonio’s advice to other children and teens navigating CHD? “Your cardiologists want the best for you. If you’re passionate about something, tell them. They will help you work it out.”