OPINION: Baby got another’s heart. 30 years later, it’s still beating

Andy and Susan May in March of 1991 after their son, Nick, who was not yet 2, received a heart transplant. (Photo courtesy of Susan May)
Andy and Susan May in March of 1991 after their son, Nick, who was not yet 2, received a heart transplant. (Photo courtesy of Susan May)

Credit: Courtesy of Susan May

Credit: Courtesy of Susan May

Every so often reporters are fortunate enough to go back and write stories we initially missed or passed on writing in the first place.

This is one of those instances: the case of Nick May, a tall, rail-thin fellow who is now a husband, father, store manager and long-ago recipient of a dying baby’s heart.

Thirty years ago, on March 21, 1991, May, who was not yet 2 years old, was given a heart transplant. His case was one in the emerging world of surgery where babies who would have died a few years earlier were being saved by transplants.

I vaguely remember Nick’s case because back then I covered several counties on the periphery of metro Atlanta, including Bartow County, where Nick lived with his parents, Susan and Andy, and three older siblings. Little Nick was in the news because he desperately needed a new heart, having been born with a host of problems, including having just three chambers in the organ instead of four.

The details are fuzzy, but I distinctly recall to this day that a baby’s heart is about the size of a walnut.

A few weeks ago, I was approached by someone on behalf of Susan May, a romance novelist from Cartersville who is Nick’s mom. She had written a book, “Nick’s New Heart: 30 Years and Counting...

Hmm, that’s a good, uplifting story, I thought. Something we could use more of these days.

Nick May got a new heart as a baby in 1991 when the procedure was relatively new. Now his mother, Susan May, has written a book called, "Nick's New Heart: 30 Years and Counting..." (Photo credit: Bill Torpy / AJC)
Nick May got a new heart as a baby in 1991 when the procedure was relatively new. Now his mother, Susan May, has written a book called, "Nick's New Heart: 30 Years and Counting..." (Photo credit: Bill Torpy / AJC)

Credit: Bill Torpy

Credit: Bill Torpy

I checked our computer files to see what, if anything, I wrote about Nick way back when. Instead, on March 22, 1991, I wrote a Page 1 story about a soon-to-be-born baby named Brittany from Carrollton who was missing a large part of her heart and was expected to live just a few weeks unless a new organ could be found.

Looking back on my reporting from that time, (it’s hard to recall precisely because AJC archives say that was 3,169 bylines ago) I probably called Egleston children’s hospital about Nick, then heard about Brittany’s race for life and went with that.

Brittany was born a week later but lived just 13 days. Sadly, they never found her a new heart.

In the story about Brittany, I wrote, “Although one child has lived for nearly five years with a donor heart, the long-term survival of infant heart recipients is still unknown.”

So here we are, three decades later and much more is known about long-term survival. Nick May is living proof.

According to Dr. Kirk Kanter, the surgeon who transplanted the heart into Nick, the median age for survival of infants less than a year old is 22.3 years. For patients, like Nick, between ages 1 and 5, the median age for survival is 18.4 years.

Nick received the heart of a 3-year-old boy killed by a delivery truck. Nick’s mom once wrote a letter of thanks to that family but never heard back from them. And, yes, the heart grows. It’s no longer the size of a walnut. Instead, it’s the size of a man’s fist.

Making it 30 years with someone else’s heart “is uncommon but not unheard of,” said Kanter, who stays in touch with the Mays. As of a couple of weeks ago, Children’s Healthcare of Atlanta - Egleston Hospital had performed 399 heart transplants since 1988. It is one of the nation’s busiest hospitals in that front.

Nick May was not yet 2 years old when he got a heart transplant from Dr. Kirk Kanter. The boy was not always enthused when visiting the surgeon. (Photo courtesy of Susan May)
Nick May was not yet 2 years old when he got a heart transplant from Dr. Kirk Kanter. The boy was not always enthused when visiting the surgeon. (Photo courtesy of Susan May)

Credit: Courtesy of Susan May

Credit: Courtesy of Susan May

Nick’s mother was a fierce advocate for her youngest child through the ordeal, one that never really abates, as transplant patients must remain on a lifelong regime of anti-rejection drugs.

She said the best way to deal with his condition was to get Nick back out there.

“I’m a big proponent of living,” Susan May recently told me. “If he was going to live just a short time, he was going to be a kid.”

He spent a couple of weeks in the hospital after his transplant. And not long after his release, his family shot a photo of a smiling and muddy 2-year-old Nick kneeling in the yard.

They sent the photo to Dr. Kanter to let him know the boy was happy being a boy.

Kanter would later use that photo at presentations to nurses, surgeons or just about anybody who wanted to hear about the field of transplant surgery.

At one presentation to nurses a couple of years after Nick got his new heart, Kanter told the audience: “This is Nick May. I transplanted him two weeks before his second birthday. His mother sent me this picture she took right after the transplant. With the picture was a note that read: ‘Dr. Kanter, You promised me quality of life with a transplant. And what is quality of life for a two year old, but a mud puddle?’

“If you wonder why we do transplants,” Kanter told the audience, “this is why.”

In a recent interview, Kanter told me, “I love to see them come to the clinic with skinned knees.”

Nick May received a new heart in 1991 and was soon outside playing in the mud. His surgeon, Dr. Kirk Kanter has often used that photo to describe quality of life for patients. (Courtesy of Susan May)
Nick May received a new heart in 1991 and was soon outside playing in the mud. His surgeon, Dr. Kirk Kanter has often used that photo to describe quality of life for patients. (Courtesy of Susan May)

Credit: Courtesy of Susan May

Credit: Courtesy of Susan May

Nick says while growing up, other children didn’t think differently about him because of his condition.

“They’d ask, ‘You have someone else’s heart?’ I’d say, ‘Yeah.’”

And the other kids would be like, “Cool,” and then they’d jump on their bikes or explore the woods or do whatever kids do.

“I always pushed myself because I didn’t want to be any different,” said Nick. “They always told me to run at my own pace. So I just go with the flow.”

He tried to stay involved with regular life, whether it was playing baseball, tennis and soccer, or riding bikes. ”If it was tackle football, then it was two-hand touch for me,” he said.

Nick was the manager for the Cass High School football team and graduated — on time, with kids his age — in 2008. At 18, he had to have a pacemaker installed and now monitors a newer pacemaker with a blue-tooth device.

He graduated from Dalton State College in 2015.

In 2014, he married Lacey Caldwell, whom he’d met years earlier in high school. They have a daughter, Ava Grace, who is just a few months older than Nick was when he got his transplant. Her heart has been checked. She’s fine.

He has worked at Walmart for 10 years and is a team leader in the meat and produce sections.

Looking through a scrapbook at her Cartersville home, Susan May said, “He was on the cutting edge; he’s still on the cutting edge. They made him live, but they never anticipated getting him to adulthood. They learned from him all the time. They’re still learning from him.”

Nick, sitting on a nearby couch, smiled and added, “I have become a guinea pig. They’re surprised I made it this far.”

Said his mother, “We wanted him to grow up to be a decent human being who contributes to the world and appreciates what he’s been given. He owns his own home, pays taxes. We’re proud of the man he has become.”

Nick May got a heart transplant in 1991. Here he is with his wife, Lacey, and their daughter Ava Grace, who is not much older than Nick when he got the surgery. (Photo courtesy of Nick May)
Nick May got a heart transplant in 1991. Here he is with his wife, Lacey, and their daughter Ava Grace, who is not much older than Nick when he got the surgery. (Photo courtesy of Nick May)

Credit: Courtesy of Nick May

Credit: Courtesy of Nick May

Nick shrugged. “I’ve never been a ‘Poor me’ person,” he said. “You just need to be proud of yourself. People ask, ‘Nick, how do you do that?’ Well, how do you not?”

Then he paraphrased Bob Dylan, saying, “If you’re not busy living, you’re busy dying.”

About the Author

ajc.com

In Other News