One of the most uplifting medical stories of 2015 was the first-ever pediatric hand transplant, a remarkable feat achieved by a surgical team at The Children’s Hospital of Philadelphia (CHOP).
What made the story even better was the charismatic 8-year-old patient, Zion Harvey. Media outlets showcased Zion’s remarkable resilience and infectious charm in the face of adversity as well as the strong, consistent support from his family before and after the July 2015 procedure.
Although more than 250 children are on a waiting list at CHOP for the same surgery, finding another patient like Zion won’t be easy. He already was on powerful anti-rejection drugs because of a previous kidney transplant, which made the decision to go ahead with the surgery easier for all involved.
Regardless, his case will provide valuable insights for pediatricians, surgeonsand other medical professionals for years to come.
“It’s been an incredible experience so far, especially having a patient like Zion,” said Benjamin Chang, M.D., co-director of CHOP’s Hand Transplantation Program, associate chief of the Division of Plastic Surgery at Penn Medicine and one of the coordinating surgeons. “I couldn’t imagine having a better first candidate for this operation. I hope in the end it will be a tremendous benefit for him.”
Fighting an aggressive infection
Zion’s serious medical problems began with an infection six years ago.
“He had a commonplace infection that was not following the normal course. He was getting sicker and sicker,” said Daniel J. Levy, M.D., FAAP, vice chair of AAP District III. A then-associate at Dr. Levy’s office, Julie E. Ellis, M.D., FAAP, was Zion’s primary pediatrician and let Dr. Levy know “something isn’t right here, we need to get this child to the hospital.”
That’s where doctors discovered the 2-year-old had a severe sepsis infection that required amputation of his hands and feet and a kidney transplant.
“She did what any good pediatrician would do,” Dr. Levy said. “Ultimately, the decision she made saved his life.”
Zion’s mother, Pattie Ray, donated a kidney for the transplant, and she and the rest of Zion’s family helped him adjust to a life with prosthetics and frequent checkups.
Years later during a visit to the Shriners Hospital for Children – Philadelphia, Zion and his mother learned about Penn Medicine’s groundbreaking work with hand transplants and its new pediatric program at CHOP.
In 2011, Penn Medicine conducted a double hand and forearm transplant on a Virginia woman who, like Zion, lost all four limbs because of a major sepsis infection. The surgery was led by L. Scott Levin, M.D., FACS, chair of the Department of Orthopaedic Surgery at Penn Medicine.
Drs. Levin and Chang decided that adult double hand transplants would provide a foundation for conducting the same complex procedure on a child. The two doctors then worked with CHOP leaders to develop an extensive, multidisciplinary team for pediatric surgeries.
Thanks to a coordinated effort between Shriners and CHOP, Zion was accepted as a candidate for surgery. In spring 2015, a donor request was coordinated through the Gift of Life program, and within three months there was a match.
Planning for success
Almost two years of preparation went into the operation, including building a cross-functional “team of teams” and rehearsing.
“We spent months and months planning and rehearsing — in groups and in one-on-ones — to make sure that when the day came to do his transplant, it would go well,” Dr. Levin said.
The team relied on concepts from the book The Checklist Manifesto: How to Get Things Right by Atul Gawande, M.D., M.P.H., to prepare step-by-step lists for the orchestrated and complex surgery, which occurred within a couple of days after the match was found, Dr. Levin said.
“This was the first time for this operation on a person this size. We wanted to make sure we could do it in a timely fashion,” Dr. Chang said. “Once you take the donor limbs off, you have five or six hours to reattach them, otherwise the tissue dies. We were under a fair amount of time pressure so everything had to be very well-organized.”
During the surgery, four teams worked simultaneously. The donor and recipient parts were prepared. The teams put the bones together, then hooked up the blood vessels, tendons, nerves and skin.
“There was a specific order we had on how to do this,” Dr. Levin said. “It was standard surgical procedure for us.”
Ten hours and 40 minutes later, Zion had new hands.
Learning and evaluating
About five months after the surgery, Zion, who works with an occupational therapist several hours a day, was starting to use his hands, write his name with a pen, feed himself and scratch his nose with his index finger, Dr. Levin said. He also was on a “pretty consistent pathway of non-rejection.”
The surgeons are optimistic about the long-term possibilities of more pediatric double hand transplants but realize they need to learn more before they conduct another one.
“Our team will review what we’ve done right, see what we could do better, see how he’s doing after a year — then we’re perhaps ready to look for other children with stringent screening and diligent evaluation,” said Dr. Levin, who said pediatricians can refer patients to the CHOP program for consideration.
Doctors first will look for candidates who already are taking anti-rejection medications, which can suppress the immune system and put patients at higher risk for infection and malignancies the rest of their lives, Dr. Chang said.
“If we can remove the rejection hurdle, it will make hand transplantation a much more likely routine part of practice,” Dr. Chang said. “As long as we have the rejection problem, it’s never going to be something where you would go to a local hospital to get it done.”
Dr. Levin is optimistic the surgery can become a common procedure in his lifetime.
“Someone had to be first. It was Zion, and we owe him and his family a great deal of gratitude,” he said. “We’ve proven this can occur."