An Israeli child runs to pick up a seemingly abandoned toy from the street. In a tragic flash, he discovers it is a bomb and with the loss of both his hands, child’s play is over.
Until now that boy would have never again been able to grasp his mother’s hand in his. But with a new groundbreaking procedure performed by a team led by Dr. L. Scott Levin in Philadelphia this July, there is renewed hope.
And the hope springs forth from Zion.
Today a bubbly, active and precocious eight year old, at age two Zion Harvey was struck by a sepsis infection that led to the amputation of his hands and feet. Barely hanging on two years later, he also underwent a kidney transplant through a donation from his mother, Pattie Ray.
This July, he underwent a further organ transplant — a pair of hands — made possible by an unknown boy of similar size and pigmentation whose life was severed too early. This groundbreaking bilateral pediatric hand transplant opens up a world of possibilities to Zion, as well as to a world of children who, through birth defects, infection, or injury, have lost their hands and who, until now, had no recourse to regain them.
Lead surgeon Dr. L. Scott Levin, who helmed a 40-strong team of medical personnel at the Children’s Hospital of Philadelphia (CHOP), told The Times of Israel in an early morning conversation this week that he has already received some 250 applications from families of handless children from all over the globe. This procedure fills a real need.
The successful vascularized composite allotransplantation (VCA) in July reflected a year’s worth of training, drills and cadaver trials for the surgical team, which was supplemented by, among others, social workers, mental health professionals, and rehab experts pre- and post-op.
The costs are not yet fully known, and as an experimental procedure, insurance cannot be counted on to cover it. To aid in the Harvey case, many hospital staffers have volunteered their time, said Levin.
Zion prepares to climb another mountain
Levin’s was a project decades in the making, building on the successes and failures of previous procedures, which included pediatric replantation (reattaching a patient’s own limb). The first successful hand transplant in an adult took place in Louisville in 1999.
‘There’s not going to be a pediatric hand transplant program on every corner’
Such a delicate and complex surgery requires massive resources and manpower, and the coordination of many simultaneously moving parts.
“There’s not going to be a pediatric hand transplant program on every corner,” said Levin.
The director of the Hand Transplantation Program at the Children’s Hospital of Philadelphia, chairman of the Department of Orthopaedic Surgery at Penn Medicine, and Professor of Surgery (Division of Plastic Surgery) at the Perelman School of Medicine at The University of Pennsylvania, Levin is one of a select few in the world who could see it through.
Dually trained as an orthopedic and a plastic surgeon, the overlapped disciplines helped Levin captain the large medical team as it used steel plates and screws to connect bone to bone, and then reconnect arteries, veins, muscles, tendons and nerves using microsurgical methods.
And already a few weeks post-op, Zion could move his new hands and even eat pizza with them.
He’s as normal as can be, under the circumstances.
But since age four, Zion has ingested daily doses of immunosuppressives, a necessary treatment that all organ donor recipients must take for the rest of their lives to avoid rejection. It has sobering side effects and increases susceptibility of opportunistic infections and causes a manifold higher risk of developing cancer. It is also toxic and could lead to an eventual need for a kidney transplant.
Making a choice to sentence one’s child to a seemingly lifetime sentence of pharmaceuticals would be a bitter pill for any parent to swallow
Were it not for the life-saving nature of most transplant operations, making a choice to sentence one’s child to a seemingly lifetime sentence of pharmaceuticals would be a bitter pill for any parent to swallow.
Yet for young Zion, it was actually his immunosuppression, alongside family support and personal motivation, that made him a perfect candidate for the experimental pediatric bilateral hand transplantation — and the possibility for a more normal life.
As this procedure is not a life-saving operation, his preexisting immunosuppression for his kidney transplant was key in his selection for the trial. This is a quality-of-life operation, wherein the risks of follow-up medication may ethically outweigh any new limb functionality.
But other cases may not be so clear cut: Take for instance, said lead surgeon Levin, “heaven forbid” the Israeli child who lost his limbs in a terrorist attack.
(Israel comes up several times in conversation and his connection to nascent Israel-based hand surgery is decades old. A member of the American Israeli Orthopaedic Society, Levin trains Israeli surgeons on fellowships in Philadelphia. Alongside Israeli surgeon Dr. Avraham Shaked, Levin established the Hand Transplantation Program at the Children’s Hospital of Philadelphia. He believes, given the proper resources, Israel “could and should” work towards its own hand transplant center.)
“What would the family do for this child?” asked Levin, when faced with the possibility of cancer 30-40 years down the line.
‘We impose our adult will on our children for their good, not for their bad’
“As parents, we make decisions for our children all the time,” said Levin. “We govern what they eat, when they sleep… We impose our adult will on our children for their good, not for their bad.”
As discussed in a paper “Pediatric facial transplantation: Ethical considerations”: “Informed consent is a notoriously difficult issue when children are involved… There is the question of when a child may be capable of acting autonomously, and accepting for himself/herself this high-risk intervention (given, among other issues, the serious risks posed by lifelong immunosuppression). Generally speaking, judgments about a child’s ability to act autonomously in this regard will have to be made on a case-by-case basis.”
Levin said a parent’s decision to pursue this procedure, “is not made in one outpatient visit.” The hospital uses a stringent informed consent process and “we are exquisitely selective,” he said.
However, as Zion has already been through so much, his mother, Pattie Ray was already well aware of the risks.
For Zion, this new procedure “was no more of a risk than a kidney transplant. So I felt like I was willing to take that risk for him, if he wanted it — to be able to play monkey bars and football,” said Ray.
And for Levin, this quality of life is “the whole reason why we’ve done this — so that he can basically feel normal again and do things like climb on the monkey bars and pet a dog with his hands. Those are our expectations and hopes,” he said in an interview with a medical journal in late July.
Zion, whom Levin described as a “very spiritual little boy,” will work hard, hours each day after school at rehabilitation of his hand for several years to gain true functionality.
“It is his full-time job now,” said Levin, who will see his patient monthly for the near future.
Mother Pattie Ray said in a press statement in August that Zion is ready to take on the mission.
“The challenges facing Zion are new, but his determination should overcome them. He’s already done so many amazing things. This is just one more hurdle he’s ready to jump,” said Ray.