Boy's double hand transplant is the first of its kind

Sitting on his bed at Children's Hospital of Philadelphia, the first child in the world to receive a double hand transplant talked about his big plans.

Zion Harvey, 8, of Baltimore, wants to climb the monkey bars. Throw a football. Play the guitar. Maybe even become a doctor.

"But I'll be the kind that doesn't give shots," he said.

No child has ever received a transplant of a single hand, let alone two. Only about 60 people worldwide — including the University of Pennsylvania's first case, a young woman, in 2011 — have undergone upper extremity transplants since the first one in France in 1998, according to the international registry.

These complex "composite" tissue transplants — which involve reattaching blood vessels, bones, nerves, muscles, and skin — remain rare because, unlike major organ replacements, they are not lifesaving. Yet patients must take immune-suppressing drugs for the rest of their lives to prevent rejection, raising their risks of infection, some cancers, and other side effects.

Zion was uniquely suitable because he was already taking anti-rejection drugs to protect his kidney transplant.

At age 2, a life-threatening bloodstream infection required the amputation of his hands and feet, and ruined his kidneys. At age 4, after years on dialysis, he received a kidney from his mother, Pattie Ray.

About two years ago, she took him to Shriner's Hospital for Children in Philadelphia, which specializes in caring for kids with prosthetics like those he wears on his lower legs. There she learned about Penn's hand transplant program. "The doctor at Shriner's thought Zion would be a perfect candidate," recalled Ray, a nursing student at Baltimore Community College

Zion's precocious self-awareness and resilience also impressed the transplant team from Children's and Penn. On a documentary video made by the team, Zion said of his stumps, "I wasn't always like this. When I was 2, I had to get my hands cut off."

Of school, the second-grader said, "I think some of my classmates don't mean to say mean things to me, but it just slips out. Everybody has their own way of thinking about things."

Anticipating the transplant, he said, "When I get these hands, I will be proud of what hands I get. And if it gets messed up, I don't care because I have my family."

His mother said he took the transplant surgery in stride. "This is just another hurdle that he jumps. He's so amazing."

Transplant team leader L. Scott Levin, who established Penn's hand transplant program and expanded it to Children's, called Zion "one of the most remarkable youngsters I've ever met."

"His maturity is way beyond his age, as is his insight and sensitivity," Levin said. "He's brilliant, not just smart. And his stoicism has been remarkable. I've never seen him cry, complain of pain or be withdrawn."

In April, Zion was put on a waiting list for hands, to be obtained through Gift of Life, the region's organ and tissue transplant network.

He and his family were warned that the wait might be a year or two. Federal organ-sharing data showed that only a tiny number of children of the appropriate race, age and sex become donors each year.

But on July 6, Zion underwent the 11-hour surgery, an overnight marathon involving two dozen surgeons, nurses, and anesthesiologists. The process required four separate surgical teams, two for the donor hands and two for Zion.

Steel plates and screws were used to connect the forearm bones, then the arteries and veins were sewn using thread thinner than a human hair. With blood flow re-established, each muscle and tendon was reattached, followed by the nerves.

Zion faces many months of physical rehabilitation. While in the hospital, he has been fitted with a series of custom-molded plastic splints that protect his wrist and fingers, while allowing therapists to help him learn to use his new hands.

"By September, the splint will be less bulky and cumbersome, and his wrist should be free," said Children's occupational therapist Kelly Ferry.