For seven weeks in a hospital room, unsure of if he’d get a new heart, Lowell Thomas passed the time by memorizing every lyric to “Get’cha Head in the Game” from “High School Musical.”
In the pediatric cardiology ward at UF Health Shands Hospital, 11-year-old Lowell committed the Disney TV musical to memory in the hopes one day he would be able to sing, dance and play basketball — his favorite sport — just like Zac Efron and Corbin Bleu’s characters. During the 13 weeks Lowell was at Shands, he and his mother, Malika, both natives of St. Croix, U.S. Virgin Islands, weren’t sure if he’d be able to sing, dance or play again.
Lowell’s heart was failing him. He was gaining more weight because of it. His asthma, which he’s had since he was 3 years old, took a severe turn.
“I described it like a bear,” Malika said of her son’s breathing.
The muscle became abnormally thick and stopped pumping sufficient amounts of blood to the body, a heart disease known as hypertrophic cardiomyopathy. He needed a new heart or else he would face a heart attack and likely die soon after.
“I was surprised, it was a big surprise,” Malika said. “I knew it could have been his lungs. OK, then you tell me he needs a transplant. I thought, ‘A whole new heart? ... a whole new heart?’”
What started as a two-week July vacation to Jacksonville turned into a monthslong period of uncertainty. Malika and Lowell found resolve Nov. 9, when Lowell was discharged from Shands with a brand new heart beating strong in his chest.
“When you really think about it, what somebody has to go through, what you have to go through, you always have to remain positive,” she said.
Lowell is one of every about 100 U.S. children at risk of heart disease, said Dr. Dipankar Gupta, a Shands critical care doctor and pediatric cardiologist who worked with Lowell almost every day.
It was July 31 when cardiologists at Wolfson Children’s Hospital in Jacksonville diagnosed Lowell with his fatal heart condition.
One week later, Lowell and his mom left Malika’s aunt, Bridgette Laurent, whom they were visiting while on vacation, for Shands, the only hospital in North Central Florida with a pediatric cardiology team and resources necessary for a heart transplant.
Shands doctors confirmed Aug. 31 that Lowell needed heart transplant surgery.
For more than seven weeks, he and Malika waited, unsure of when he would be paired with a donor heart.
Patients and donors have to match as close as possible in age and weight and match exactly in blood type for a successful transplant surgery, which is why wait times can be so long and hard to predict, said Dr. Frederick Fricker, a Shands pediatric cardiologist who worked with Lowell almost every day.
“There’s nothing typical about it,” Dr. Fricker said. “We have patients even now that are waiting months. I wish there was something we could do, it doesn’t work that way. It is very difficult on families, it’s very tough for them.”
People can register to be organ donors via their driver’s license and Department of Motor Vehicles information.
But in cases like Lowell’s, with preteens and young children in need of transplants, the donors themselves are often recently deceased children whose families gave consent for donation, Gupta said.
Donors are often patients of motor vehicle accidents or various fatal conditions who ultimately could only function in a vegetative state, at which point the family decides if they will give consent to donate organs.
In the past two years, Shands pediatric cardiologists have facilitated between 22 and 25 heart transplant surgeries, Gupta said.
Amid the constant risk for patients and grief of former donors and their families, Gupta said it’s the strength of his young patients and their families that keeps him going as a pediatrician.
“It’s just amazing to see how well they are after they get the organ and how well they do getting transplanted,” he said. “That just keeps us going.”
With new hearts pumping blood through their veins, Dr. Fricker said patients often feel as good as new after surgery and about six months. All patients have between an 85 to 90 percent survival rate five years out from their surgery and about 75 percent 10 years out.
“We’ve had transplantations climb mountains, we’ve had them participate in triathlons, some of our transplant women have had babies,” he said. “There’s absolutely no restrictions.”
Lowell stayed strong during his months in intensive care at the Shands Congenital Heart Center.
He bonded with his doctors. The nurses and volunteers brought him a PlayStation 3 he’d play with a wide grin across his face. The hospital staff organized mini dance-offs in which Lowell would showcase his signature moves to MC Hammer’s “U Can’t Touch This.”
For his 11th birthday on Oct. 30, they gave him Spider-Man and superhero balloons and paraphernalia to decorate his hospital room.
“When I first came there I was kind of scared and mad,” Lowell said. “But after a while I was getting along with them. The doctors are all good men, and I loved the nurses who helped me.”
Being away from home for more than four months has taken its toll, Malika said. They miss their family and their house, from which you can hear the ocean winds come into town from the beaches less than a 10-minute drive away.
For nearly every weekend as long as she can remember, Malika would take Lowell to play in the white sand and turquoise water.
Malika said she thanks Gainesville for the home away from home it has been and for everyone at Shands who treated them gracefully and save Lowell’s life. While she hasn’t met the family who gave her son the heart now beating in his chest, she said she’ll never forget them.
“We will be forever grateful to the family because they gave him a second chance of life, to have as much normal as a life for an 11-year-old.” she said. “We do grieve with the family, we pray for them every day.”