“I want to write a thank you note to my donor's parents for giving me new hands. They did not have to do this. ”
Photo credit: Children’s Hospital of Philadelphia
Zion Harvey is a vibrant and intelligent nine-year-old who is wise beyond his years: In his nine short years, Zion has been through greater trials than most people experience in a lifetime.
At age two, Zion developed a severe systemic infection which resulted in the amputation of his hands and feet. Two years later, at age four, he underwent a kidney transplant. Despite this tragic situation, Zion’s indomitable spirit and that of his mother, Patti Ray, prevailed. Patti sought a new beginning for her son.
Pattie and Zion were referred to Shriners Hospitals for Children — Philadelphia, renowned for their pediatric orthopaedic expertise. There, Zion’s physicians, together with colleagues from the Children’s Hospital of Philadelphia and Penn Medicine, came to the conclusion that Zion would be an excellent candidate for a bilateral hand transplant — the first child in the world to undergo this procedure.
Planning for this monumental surgery was led by Penn Medicine’s L. Scott Levin, MD, FACS, Chairman of the Department of Orthopaedic Surgery, Professor of Plastic Surgery in the Perelman School of Medicine and director of the Hand Transplantation Program at Children’s Hospital of Philadelphia (CHOP).
“Zion’s surgery was built on the groundbreaking work of Penn Medicine’s hand transplant team, starting with our first adult hand transplant in 2011,” Dr. Levin explains. “We used this knowledge to adapt the intricate techniques and coordinated planning needed to perform the procedure on a child. Children’s Hospital of Philadelphia is one of the few places in the world with the physicians, nurses, research and technology to push the envelope of pediatric medicine this far.”
Prior to surgery, Zion required 18 months of extensive testing and evaluation. Concurrently, Dr. Levin orchestrated a vast team of surgeons, anesthesiologists, radiologists, neurologists, nurses and many others required for the operation.
Then, in the summer of 2015 when Zion was eight years old, everything fell into place, and he underwent the first bilateral pediatric hand transplant.
Medical history is made
Zion’s surgical team was comprised of 40 clinicians, separated into four operating teams, all working at the same time. Surgeons from three institutions contributed to the procedure: The Children’s Hospital of Philadelphia, Penn Medicine and Shriners Hospitals for Children — Philadelphia.
The team worked to surgically connect donor bone, nerves, muscles, skin and tendons onto Zion. Advanced microvascular surgical techniques connected donor arteries and veins to get blood flowing.
After ten hours, Zion was wheeled into the pediatric intensive care unit with two new hands. The operation was a great success.
Once surgeons ‘cleared’ Zion, post-surgery, he began intensive rehabilitation and hand therapy with CHOP’s expert pediatric occupational therapy team. At first, Zion could barely wriggle a thumb or pick up a small block. “Regaining his function, helping tendons to glide and muscles to grow stronger meant reprogramming his brain to perform these actions,” explains Benjamin Chang, MD, co-director of the Hand Transplantation at CHOP and Associate Chief of the Division of Plastic Surgery at Penn Medicine.
Day-by-day, Zion’s function improved. He continued his rehabilitation for up to eight hours each day.
Now, more than one-year later, Zion’s hands and forearms are growing and working with him: He can zip up his jacket, use a pencil and take his medication – all on his own.
Mapping the brain’s adaptability
“Through MRI imaging, we are monitoring how Zion’s brain is rewiring itself as he receives physical rehabilitation,” Frances Jenson, MD, FACP, Chair of the Department of Neurology at Penn Medicine, details. “The goal is to observe the correlation between his therapy and the re-development of the hand portion of his brain.”
This knowledge can benefit both children and adults who undergo hand transplantation by learning which rehabilitation techniques are most effective for regaining function. It’s evidence-based data that could be used for both post-transplant or trauma patients.
Zion’s progress will be followed by his clinical team throughout his life. The pioneering spirit of one unforgettable child named Zion Harvey, his Mother Patti, together with a world-class team of medical professionals and the generosity of a donor family, broke new barriers for Zion himself — and for all children.
“I’m part of the world, again.”