Calendar Kids
2012 marks 10 years in the “new” children’s hospital and the 60th anniversary of the UNC Department of Pediatrics, a fact that makes the theme of this year’s pediatric calendar so poignant—"Celebrating a Decade of Difference." The calendar features 17 children and young adults who were patients at UNC before there was a North Carolina Children’s Hospital. They and their families have witnessed an entire evolution in care and can testify to the tremendous impact the “new” N.C. Children’s Hospital has had in the lives of hundreds of thousands of children since its doors first opened 10 years ago. Join us here online each month to learn more about our featured patient and clinical programs.
A Lifetime Battle
Fifteen-year-old Heath’s lifelong medical battle started when he
was just 10 months old. That’s when he was diagnosed with
rhabdomyosarcoma, a rare form of cancer. With the help of his UNC care
team, Heath fought that battle and won—but his fight for life was far
from over. He then went on to receive a heart transplant at age 10.
This is Heath’s story.
Written by
Sarah Johnson for N.C. Children's Hospital
Fifteen-year-old drummer Heath is hardcore. His band rocks out to hardcore music, but what’s even more impressive is Heath’s battle for life since he was only 10 months old. Heath fought and overcame a rare form of cancer as an infant, then went on to receive a heart transplant, all under the pediatric care of UNC Health Care. Now that’s hardcore.
When Heath was only 10 months old, his pediatrician in Wilmington discovered a tumor and immediately rushed the infant via ambulance the three hours to UNC. After some testing and a biopsy, the pediatric oncology team diagnosed him with rhabdomyosarcoma, a cancerous tumor of the muscles that are attached to the bones. The medical plan was to start Heath on a chemotherapy protocol until the tumor was small enough to remove it in surgery. Fortunately, the chemo was quickly successful, and the tumor was removed shortly after Heath's first birthday. Caregivers continued post-surgery with radiation and then another bout of chemo until Heath’s visits to UNC and the necessity of his routine scans became less frequent.
“With Dr. Gold and the oncology part of his care, we were spoiled by it,” recalls Heath’s dad, Michael. “They were amazing as far as how they kept us informed. Your whole world is turned upside down. They could have been very clinical and not so compassionate. They were doing their job, but they also made sure we knew everything that went on. That whole team has become a part of the family.”
Heath's pediatric
oncologist, Dr. Stuart Gold, has a special
bond with Heath and his family, whom he calls "the Smiths," since their
last name that is long and difficult to pronounce. He also teases both
Heath and his dad, who favor long hair to go along with their band
image, that he is going to cut it off one day.
“I think/hope/pray Heath got great care in both the new and children’s hospital,” says Dr. Gold. “The new one sure is more spacious and comfortable for our families. It allows us to care for kids in a warmer, more kid-friendly environment.”
Heath’s dad agrees. “The comfort level in the new hospital is amazing. It just seems to be a much more convenient and much more user friendly place for the providers, which then makes it much more friendly for patients. I hoped I would never see the inside of the new hospital once it was built, but it is fascinating.”
Cancer free, Heath fared well until around the age 6, when teachers at school began to notice he was fatigued. This went on for some time until more severe symptoms brought him to the hospital in New Hanover. Tests indicated signs of heart failure. Once stabilized, Heath was air lifted to UNC, this time to the new children’s hospital, opened in 2002.
Cancer was soon ruled out as a cause, with the exception of a
suspicion that medicine that providers had used earlier for chemo had
resulted in heart damage. Although Heath was extremely ill that
inpatient stay with liver failure, kidney failure and sepsis, he pulled
through and eventually went back home. He was put on the heart
transplant list at age 6, later taken off and then put back on at age
10 when he showed recurring symptoms. From this point, things happened
quickly. Slightly more than a week after his name was put 
on the list,
his family got a call late one evening that they had a donor. The next
morning, Heath received his new heart.
Since his heart transplant, Heath has a new lease on life. At 15, he feels “just like all of the other teenagers. Half of the time, I don’t even acknowledge that I’ve got a huge scar on my chest,” says Heath.
Heath lives for his drums and his music and is in multiple bands, one of which he plays professionally alongside his dad.
“Before he had been suffocating,” says Michael. “With his new heart, everything works the way it is supposed to. We were so used to him being fatigued, now it’s like he is a whole different kid.”
According to dad, the two have been “making music” since Heath was a baby and now they even write their own music together. Above all, though, Michael’s biggest joy as a parent is the fact that his son is there to wake up every morning.
“When he was a baby, we wondered would he start school, will he live to be a teenager? He’s sort of pulled it off, year after year,” says Michael.
And for Heath, it’s pretty simple as well. What makes him most happy, he says, “are my friends, my family, my drums, music and being alive.”
