A rare heart condition, hidden until Nathan was 6, was a surprising turn in his family’s journey that they never expected to take. After an amazing surgery to rescue his left pulmonary artery, Nathan has been inspired to “never give up,” just as his heart doctors refused to give up on him.
Unlike other kids who are diagnosed with CHD before birth or as newborns, Nathan was diagnosed with an absent left pulmonary artery after his mom took him in for a routine sick visit for the flu in 2017. His pediatrician heard a heart murmur and sent them to Sibley Heart Center Cardiology for further testing, which revealed his condition. Although the family was told by some that there was little to be done, Sibley pediatric cardiologist Holly Bauser-Heaton wanted to try.
We didn’t realize at the time how rare this procedure was and that it had never been done in a patient over the age of 2,” mom Jennifer said. “Dr. Heaton told me not to Google it, and I didn’t, so I didn’t understand how big it was. We just knew that she said she had hope that she could do it, and we thought, ‘Of course we’re going to try.’ Nathan is very inspired by the fact that she didn’t give up on him and ended up saving his life.”
So inspired, in fact, that he thinks he may become a heart doctor when he grows up. Nathan has spent time discussing his CHD with Sibley doctors, who have graciously shared their expertise with him.
“He’s so interested in everything they’re doing for him,” Jennifer said.
Today, Nathan has healed from his surgeries and is very active. At the age of 8, he discovered American Ninja Warrior and hopes to be on the show one day. Nathan has recently fallen in love with free running, a sport that emphasizes fancy flips and stylistic acrobatics, while showcasing the athlete’s ability to be speedy and light on his feet. The COVID-19 quarantine time has given him the opportunity to advance his work on his moves. He and his mom also started a 365-day handstand challenge, which they post to his Instagram page.
“We’re almost done with our goal, and he’s very determined to make 365 days,” Jennifer said. “I love his perseverance. He’ll get me up at night if we’ve forgotten to do it and say, ‘Come on, mom. We have to do this!’”
Nathan’s Instagram page @nathantheheartwarrior, which focuses on his heart journey and learning disabilities, has connected him to others in a unique way. He loves knowing that he can give hope to other kids like himself, as well as people older than him.
“It’s the coolest thing to have people reach out to us, from other kids who are having a hard time facing heart surgery to adults who’ve been through CHD,” Jennifer said. “The heart community we’ve found through Instagram is so cool.”
Kids at Heart also has been instrumental in connecting Nathan and his family with communities like the students at Georgia Tech, who helped host a Smart Heart event at the hospital when Nathan was there for surgery. Afterward, Nathan’s family was invited to tell their story at a Georgia Tech for the Kids Dance Marathon celebration, which raises money for CHOA.
“The students at Tech have become a huge part of our lives,” Jennifer said. “They are amazing, and this is a student-run organization. They really take the kids in and nurture them, and they make both our kids feel like celebrities. As a parent, that’s priceless.”
Jennifer says not everyone is as willing to be outspoken about what they’re going through, but she and Nathan have always been open. Nathan wants to help people and let them know they’re not alone.
“He’s always been a positive kid,” Jennifer said. “I would never have wished this on our family, but he worked really hard to make it through heart surgery and learn to read despite his learning disabilities. He knows he can work hard and do hard things. That’s shaped him into this amazing child. The tension builds character.”
For more information about Sibley Heart Center Cardiology and our pediatric cardiology specialists, click here.