Before Kirk Kanter, MD, Director of the Heart Transplant Program at Children's Healthcare of Atlanta, spoke at a recent event for the Georgia Transplant Foundation, a special guest took the stage. Nick May, 30 years old and cradling his infant daughter, introduced Dr. Kanter to the crowd as a longtime friend, a caring physician and the talented surgeon who gave Nick a new heart—and a second chance at life—28 years earlier.
Nick had arrived at Egleston hospital less than 24 hours after he was born on April 5, 1989, in a Rome, Ga, hospital. The doctors in Rome could tell he had some kind of heart problem, and they knew he needed to see the pediatric heart specialists at Children's.
At Children's, Nick was diagnosed with several major heart defects that can be present at birth: hypoplastic left heart syndrome (HLHS), transposition of the great arteries, coarctation of the aorta and a septal defect. Nick's first open heart surgery, a Norwood procedure performed by Dr. Kanter followed in the next few days. After two weeks of recovery, Nick’s parents brought him home for the first time—but it wasn't long until Nick was back at Egleston in need of another surgery.
A change of plans
Nick's parents were originally told that it would take a series of procedures to treat Nick's heart, but after another pair of unanticipated surgeries before Nick was 18 months old, Dr. Kanter had concerns that Nick's body could not handle so many operations. He asked Nick's parents how they felt about a heart transplant.
“His dad and I always thought a heart transplant was a backup plan,” said Susan, Nick's mom. “We were a little surprised, but we did have complete faith in Dr. Kanter and the staff and the cardiologists at Children’s.”
Nick was added to the heart transplant list. After about six weeks of waiting—just two weeks before Nicks second birthday—a donor match was found and Dr. Kanter performed Nick’s heart transplant surgery. Susan said the difference was remarkable and visible.
“I had sent a baby that had blue fingernails and blue lips and didn’t even weigh 20 pounds into the OR, and I received a nice pink baby back, who ate like nobody’s business when it came time to have food again,” Susan said. “It was an immediate change for us.”
“Like any other kid”
The first few years of Nick’s life were a whirlwind of surgeries, biopsies and last-minute drives to the hospital whenever fever or another illness struck—when you've had a heart transplant, even the slightest temperature merits a trip to the doctor. But by the time Nick was 4, he only had to check in with his cardiology team once every six months and he spent most of his time trying to keep up with his older brothers and sister. Susan said the challenge was good for him, particularly since he had spent so much of his first two years in and out of the hospital.
“Being a sickly, puny kid, he had the other kids to keep up with, so he had that to help drive him to try to achieve and keep up with them,” Susan said.
And generally, Nick did keep up. He played in the dirt with his siblings and ran around the playground with his friends. If one of his classmates asked why he couldn't do something, Nick would explain that he had had a heart transplant. According to Nick, “Once I told them my backstory, they were like, ‘Oh, OK,’ and they treated me like any other kid.”
For several summers, Nick and his parents attended Second Chance Family Camp, a weekend getaway for kids who have had transplants and their families. Camp Braveheart, for heart patients, was also an option for Nick, but Susan said they had more in common with the transplant crowd.
As he got older, Nick traveled to Europe and Hawaii. He learned to snow ski and water ski, and he played tennis in high school. His medical history didn't always allow him to participate how he wanted to, but he found other ways to get close to the action.
“I’m a huge football fan, so not being able to play sports like that other kids could play kinda stunk, but we found ways around it,” Nick said. “In high school I was able to be the football manager/waterboy, so it allowed me to not be on the team, but be on the team in a different role.”
Transition to adulthood
Other than a brief bout of rejection that occurred around the time puberty set in—which his doctors expected—Nick's school years were medically uneventful. It wasn't until he was 19 and attending college that he developed a serious problem. It took about nine months to figure out that Nick had developed endocarditis, which is an infection of the lining of the heart. His anti-rejection drugs had masked the infection. He needed another surgery, this time to get a new aorta.
Once again, Dr. Kanter was there to help Nick through a long and risky procedure. He brought in a colleague with more experience operating on adult hearts, but otherwise nearly everybody on the team had cared for Nick before, from the nurses to the anesthesiologist.
“When he went from the surgery into ICU, every single nurse had taken care of him when he was a baby, with the exception of one,” Susan said. “It was pretty amazing how many people were invested in him.”
That surgery was successful, and Nick was soon able to return to life as usual, graduating from college and joining the workforce. When Nick got married, in 2014, Dr. Kanter was there to celebrate. And when Nick got to help honor Dr. Kanter at the Georgia Transplant Foundation event, he brought along his 9-month-old daughter, Ava Grace, to meet the man who made her life possible.
“But for Dr. Kanter and my transplant coordinators, if it wasn’t for them, I wouldn’t be here,” Nick said. “So I’m forever indebted.”