Zion Harvey won’t be playing football anytime soon.
But it has nothing to do with the fact that he’s the first child ever to get a double hand transplant.
“I love my son’s brain,” his mom Pattie Ray said on Tuesday during a visit to Children’s Hospital of Philadelphia with Zion, 9. “He’s very smart and I want him to stay that way. Football is too risky and dangerous.”
Zion knows about risk and danger.
A life-threatening infection at age 2 cost the Baltimore boy his hands, feet and kidneys. His mother gave him a kidney when he was 4.
Then, in July 2015, teams from three Philadelphia hospitals worked for 11 hours at Children’s Hospital of Philadelphia to attach new hands to his arms.
The pint-sized sports fan returned to Philadelphia on Tuesday to mark his one-year anniversary, visit with his surgeons and talk about his goals with a roomful of reporters hanging on his every word.
“I feel happy about my hands and I don’t feel different,” he said. “I like that now that I can throw a football further than when I didn’t have hands.”
Before fielding the next question, Zion paused, displaying a sense of timing any comedian would envy.
“My next goal?” Another dramatic pause.
“Convincing my mom to let me play football.”
Zion’s recovery has been "nothing short of miraculous," said N. Scott Adzick, surgeon-in-chief at CHOP. “He’s a pioneer whose success provides hope for children who need a hand transplant.”
During the past year, Zion learned to handle a fork, cut with scissors, and wield a pencil well enough to write down his own rap lyrics in cursive. Last month, he threw the first pitch at an Orioles game at Camden Yards.
His achievements are particularly remarkable because for six years the area of Zion’s brain wired to control his hands was “asleep,” said transplant team leader L. Scott Levin. His new hands are effectively communicating with his brain. They are also growing with him and will remain proportional with the rest of his body, Levin said. Zion can feel heat, cold and pain in his fingertips.
“He’s writing, he can feed himself. He’s learning how to button. I saw him zip up his zipper,” Levin said. “So he’s gaining independence, which is the entire reason why we do this.”
Zion has had a few setbacks. A winter cold briefly sent the boy to the hospital. There were moments when his body appeared to reject his new extremities, turning them red and swollen. Doctors adjusting his immuno-suppressant drugs and the color and swelling subsided. Those complications were just a bump in the road on a long journey, his mother said.
Sepsis, a blood infection that kills 250,000 people a year, ravaged his body when he was just 2, ruining his kidneys and destroyed his extremities. As a result of the kidney transplant, he must take immuno-suppressants for the rest of his life. These drugs increase a patient’s risk of infection and cancer, among other side effects, which is why transplants are generally done only to save a life.
Zion’s mother learned about Penn Medicine’s hand-transplant program while visiting Shriners Hospital in Philadelphia.
Because he was already on the anti-rejection drugs, Zion was a perfect candidate.
“Not having hands isn’t life-threatening, but it is certainly life-impairing,” said Levin. “The risk and reward balance we felt was in our favor. It was better to do it than not to do it.”
Zion spent a month at CHOP after the operation, recovering more quickly than any adult hand transplant patient, Levin said. Before the boy was discharged to return home to Maryland, he was moving his fingers and picking up small objects. Five days a week for months, Zion underwent rigorous occupational therapy at Baltimore's Kennedy Krieger Institute to train his brain to control his hands and fingers. In May, he returned to school and took summer classes to get him ready for the fourth grade.
Through Zion’s entire ordeal, he has never complained, Levin said.
A year after the operation, Zion remains the only child to ever receive a hand transplant, Levin said, “but we intend to do more. Many, many more.”
The boy’s success has spurred “tremendous” interest from parents. Levin’s team is evaluating prospective patients, but none of them are already on immune-suppressing drugs. There are no additional pediatric transplants scheduled.
“Chances are it will occur again in the future,” Levin said. “But don’t ask me when. I can’t tell you that.”