Credit: Susan May
ATLANTA, Ga - Out of six major heart defects, Nick May had four.
Nick May was born April 5, 1989 with hypoplastic left heart syndrome (a three chambered heart, he was missing the left lower chamber), transposition of the great vessels, coarctation of the aorta, and a septal defect.
“We had no idea Nick had a heart problem until after he was born. He looked perfect but soon the doctor and nurses noticed he was having trouble breathing,” said Nick’s mother Susan May.
On April 10, five days after Nick was born, he had his first open heart surgery. His heart was the size of a walnut and he had a 50% chance of survival. Dr. Kirk Kanter of Children’s Healthcare of Atlanta at Egleston, performed the Norwood Procedure, which was supposed to get Nick through the fast growth years between birth and two years old.
At three and a half months old, Nick went back in the hospital for a heart catheterization. It was determined that his right pulmonary was too small. Again, Nick had to have surgery. After two months in the hospital, he came home developmentally delayed and had to relearn to eat. “I fed him through an EG tube again, but this time he was also fed by a machine all night long. It took him six weeks to grow strong enough to eat everything he needed by mouth during the day.”
One month after his first birthday, Nick went in the hospital for another heart catheterization. This time it was determined that his left pulmonary was too small. He went to surgery again. Trying not to put Nick on the heart-lung machine, Dr. Kanter went in between two ribs on Nick’s side. He did not tolerate the procedure well and almost died on the operating table before he was turned over and opened up down the front for the third time.
Two months before Nick’s second birthday, he went in for another heart catheterization. It was time to consider doing the next repair surgery. Dr. Kanter asked at this point how we felt about Nick having a heart transplant. Nick’s heart had so much scare tissue that it wouldn’t survive another surgery.
Nick was put on the United Network of Organ Sharing list. “We waited for six weeks for a heart. Nick received his new heart on March 21, 1991, just two weeks before his second birthday.”
He spent two weeks in the hospital. For the next three months he couldn’t be in crowds but after that he was pretty much treated like the other children.
Nick was one of the first 300 children under the age of 2 in the United States to receive a heart transplant and one of the first 581 pediatrics (under the age of 18) transplants in the U.S.
“We traveled regularly to the hospital for biopsies. Once a week for the first month, then every two weeks, every month for a couple of those, then out to six months. We went every six months for a biopsy until he was 21 and moved to the adult program at Emory Hospital.”
Nick never had any major rejection until he was about 13. Even for the slightest illness, or a fever as low as 99.5, Nick had to see a doctor. Anything that was off had to be reported to the transplant coordinator.
During the first year after transplant, Nick and his mother made a number of trips to the ER in the early morning hours. From the time Nick was about four until he was 18, he didn’t have to spend a single night in the hospital. When he was 18 he started getting sick but the doctors couldn’t figure out what was causing it. It took eight months to diagnose endocarditis, an infection in the lining of his heart.
The infection landed on the original surgery incision and grew to the size of a golf ball. Nick had an aorta repair on top of his transplanted heart. Dr. Kanter, who had done all Nick’s heart surgeries once again did this one. Dr. Bruce Miller, Nick’s anesthesiologist, who had put Nick to ‘sleep’ for the transplant and every biopsy for sixteen years was there to do it once again. Every CICU nurse that took care of him but one had cared for Nick as a baby. This was the most difficult surgery of all. Nick had a 95% of not making it. He was afraid he was going to die, his father and I were also, and his brothers and sister were old enough to understand what was happening. Every family member held their breath for the sixteen hours Nick was in surgery.
“I think I might have been the only person who ever believe Nick would live as long as he has. He was treated as much like our other children as possible. Our goal, Nick’s father and mine, was for Nick to grow up to be a functional member of society and enjoy life. Because of the gift of a heart transplant Nick has had the chance to do just that.”
In May of 2014, Nick married the love of his life Lacey. In May of 2015, Nick graduated from college with a Bachelor of Business Administration degree.