Congenital heart disease is no match for this fighter

It’s a Saturday afternoon at Fist Fitness, a boxing gym in Westford, Mass. co-owned by Joe Bellone and Sean Eklund, nephew of the famous “Irish Micky Ward.”

A patron enters, slightly tired from a morning 5K run, but ready for another solid workout. It’s been a few months since she’s trained at the gym, but she remembers all of the motions: left, right, 1-2-3, uppercut–she’s in the zone. Her trainer, Eklund, kneels down to get to her eye level. Twelve-year old Hayden is just under 54” tall.

Hayden Schenck is not your average sixth grader. She has a zest for adventure, a love of math and a mean left hook. Her athletic achievements are all the more inspiring when you learn she was born with acute congenital heart disease and had open-heart surgery when she was just 8 months old.

While Hayden doesn’t remember the surgery, mom Heather can recall the period before and after as if no time at all has passed. Hayden was three months old when her primary care physician suggested that a pediatric cardiologist check her on again, off again heart murmur.

Hayden’s diagnosis: Congenital heart disease

snowy haydenHeather brought her daughter to see Dr. David Fulton at the Boston Children’s Hospital Heart Center. Fulton explained that Hayden had a transitional type of atrioventricular canal defect that included an atrial septal defect (ASD) (a hole in her heart’s upper blood collecting chambers), a ventricular septal defect (VSD)(a hole in her heart’s lower pumping chambers) and a cleft mitral valve (a separation down the middle of her mitral valve).

“We knew she was going to need surgery, and if she didn’t have the surgery, her life expectancy would be between four and twelve years,” says Heather.

“As brand new parents, the news about Hayden’s heart condition was the shock of our lives. In the months leading up to her surgery, I became very anxious. I felt guilty and I kept wondering: is it my fault?”

Of course, it wasn’t Heather’s fault. One in 100 children are born with a congenital heart defect. Today, there are support groups online for parents in similar situations, but “In 2003, there weren’t these online networks,” says Heather. “It was so hard for me to imagine Hayden growing up ‘normal.’”

That November, Hayden had open heart surgery with Dr. John Mayer. Mayer closed the ASD with a pericardial patch and also repaired the cleft in her mitral valve. The VSD was small enough that by closing the cleft in the mitral valve, Mayer also essentially closed the VSD.

“I remember that day vividly,” says Heather. “The hardest part was being asked to sign the papers. And a volunteer in the waiting room helped me distract Hayden when she became hungry and upset that I couldn’t feed her before the surgery. Everyone involved in her care was fantastic. I’m not a doctor, so I had to trust entirely in the team.”

Hayden still sees Dr. Fulton for check-ups every other year. She has some valve leakage, but Fulton says further surgery is not necessary right now and he will continue to monitor the situation.

From pediatric cardiology patient to boxer

“Letting her grow, athletically speaking, was a challenge for me,” says Heather. “I worried sick over her doing things. I still have good days and bad days with the anxiety.”

boxing in motionHayden feels no anxiety at all. She enjoys playing softball with her friends and is looking forward to weekend trips to Six Flags with her father this summer. “I went on my first rollercoaster last year, and I loved it. I also went ziplining. I was nervous at first, but I did it, and had a blast. It was insane.”

If Heather had one message for parents who are just learning about their child’s congenital heart disease, it would be: don’t worry. “Don’t think in terms of limitations. Your baby can do anything!”

Eklund and Bellone also see a truly resilient spark in Hayden. “Hayden exemplifies the ‘never quit on yourself’ attitude here at Fist Fitness,” they said in a joint statement. “In this world of technology, the willingness of kids to put in the effort to achieve gets diminished. We’re proud to have her as part of the Fist Fitness team. No matter what challenges or disabilities might happen, if you never quit on yourself, anything can happen.”

Learn more about the Boston Children’s Hospital Heart Center.