Most 7-year-old boys in 1987 were worried about learning the states and capitals, playing with their GI Joe action figures, and watching He-Man defend Eternia from the evil forces of Skeletor in The Masters of the Universe.
Nick Zerwas, born with a congenital heart defect, was worried that he might not make it to his eighth birthday. “I couldn’t even walk across the street,” says Nick, who is now 30. “I was a very sick child.”
His heart condition was undiagnosed for the first few days of his life. It wasn’t until his parents were preparing to bring him home from Mercy Hospital and he started crying and turned “as blue as a pair of jeans” that anyone realized there was a problem. The doctors sent him by ambulance to Minneapolis Children’s Hospital where he was diagnosed with tricuspid atresia —the tricuspid valve between two of his heart’s four chambers had never formed, and blood couldn’t get to the right ventricle and pass to the lungs for oxygenation. Since there is no way to replace a defective tricuspid valve, his little lungs had to work twice as hard to supply the rest of his body with oxygen-rich blood. “In 1980, my diagnosis was basically a death sentence,” Nick says. “My pediatric cardiologist told my parents that I would live to be about 7 years old.”
He had his first surgery at two months old, the second at two years old, and spent the next five years in and out of the hospital. He tired easily, was often short of breath, and constantly had blue-tinged lips and fingernails.
When he turned 7, his heart surgeon suggested an experimental surgery, called the Fontan procedure. It had been done only one other time, but in that case, the 6-year-old girl didn’t survive. Without the surgery, his parents knew that their son’s health would continue to decline. With the surgery, he had a fighting chance to live. His parents, Tom and Chris, elected for the surgery.
Basically, the surgeons reconstructed Nick’s plumbing by redirecting oxygen-poor blood from the top of his body to his lungs, so that his one working ventricle was less stressed. Then, they performed another operation to redirect blood from the heart’s large vein—the inferior vena cava—to his lungs.
The surgery was a success. Nick remembers waking up, looking in a mirror, and breaking down in tears. “My lips were pink instead of purple,” he says. “For the first time, I really felt like I looked like a normal kid and I was going to be OK.”
That surgery temporarily repaired his heart but paralyzed his vocal cord, leaving his voice deep and raspy. His distinct voice, though, was the least of his concerns. When he was 14, he was on the heart transplant list, waiting for a donor heart. He didn’t receive a donor heart in time, forcing his parents to make yet another gut-wrenching decision about an experimental surgery. Nick spent nearly half a year in the cardiac intensive care unit at Abbott Northwestern Hospital.
At one point, when he was feeling frustrated about his health restrictions, his mom gave him the best advice he’s ever received.
“She told me that I would never be a professional athlete or marathon runner, but neither would most of the kids in my class,” he says. “She said I should never be ashamed of my heart, focus on my schoolwork, treat everyone with warmth and kindness, and after awhile people would want to be around me.”
Her words of wisdom rang true. During his senior year, he was elected prom king and class president. Despite some health setbacks, including a stroke, he went on to earn a degree in biology and forensic science at Hamline University and marry his high school sweetheart Julie (“she’s my strength,” he says). Today Nick works full-time in the forensic crime lab at Target, is a member of the Elk River City Council, and volunteers with the American Heart Association. He shares his story at local and regional events to raise awareness and funds for cardiac research, has lobbied members of Congress as part of the association’s public policy and advocacy efforts, and—along with Julie—is co-chairing the Twin Cities 2011 Heart Walk “Community Team” during the June 4 Start! Heart Walk at Target Field. Because of his dedication to the American Heart Association, he was selected as part of the inaugural “Heart Walk Hall of Fame.”
“I owe my life to the amazing work of the American Heart Association, so I will never stop giving back,” he says.
Six different times Nick’s family was told that he had less than six months to live. Six different times he defied the odds, thanks to research and funding largely made possible by the tireless efforts of the American Heart Association.
Nick sees each day as a gift and never misses an opportunity to let his loved ones know how much they mean to him.
“I don’t know what the future holds,” he comments. “All I know is that when I woke up this morning, I felt fantastic, so I am absolutely going to make the most out of today.”
Last year, Nick’s individual team raised an inspiring $10,000. To form your own team or get your company involved, visit www.twincitiesheartwalk.org or call Karie Bundridge at 952-278-7914
