Gift of Life Donor Program celebrates CHOP, Penn Medicine and Shriners Hospitals for Children For Their Collaboration on Groundbreaking Surgery, Made Possible by a Donor and His/Her Family.
Today, nine-year-old Zion Harvey can throw a baseball over home plate. He can write in his journal, prepare himself lunch and manage zippers on his clothes. However, for most of his life, these and many other ordinary actions were impossible for this little boy.
Then, in the summer of 2015, surgeons at The Children’s Hospital of Philadelphia (CHOP) and Penn Medicine joined with colleagues from Shriners Hospitals for Children – Philadelphia, to complete the world’s first bilateral hand transplant on a child. The surgical team successfully transplanted donor hands and forearms onto then eight-year-old Zion Harvey who, several years earlier, had undergone amputation of his hands and feet and a kidney transplant following a serious infection. Read more about this historic transplant surgery here.
In the days and weeks after surgery, Zion had to start small: wriggling a thumb and flexing his fingers required intense concentration. He spent more than a month at CHOP, recovering from surgery and participating in rigorous occupational and physical therapy, before returning to his home near Baltimore.
Today, Zion is able to swing a bat and throw a football. He can take medicine and get dressed by himself. He can pick up important objects: a pencil, a fork, a piece of pizza.
“He’s gaining independence and that is the whole reason why we do this,” said L. Scott Levin, MD, FACS., Chairman of the Department of Orthopaedic Surgery and a Professor of Plastic Surgery in the Perelman School of Medicine at the University of Pennsylvania, and Director of the Hand Transplantation Program at The Children’s Hospital of Philadelphia. “Zion’s remarkable progress would not have been possible without a large team of multidisciplinary specialists, and the foundational work our hand transplant team at Penn Medicine has built, starting with our first adult hand transplant in 2011.”
“After the transplant healed, it was very important for Zion to be in therapy full-time,” said surgeon Benjamin Chang, MD, co-director of the Hand Transplantation Program at CHOP and associate chief of the Division of Plastic Surgery at Penn Medicine. “This is when we can make the most progress in terms of getting his function to come back, helping the tendons to glide, the muscles to grow stronger, actually re-teaching his brain how to fire those muscles again, and then teaching him how to do things like writing. He and his family have managed this so well, beyond our expectations.”
Over the past year, Zion has spent up to eight hours a day in rehabilitation at Kennedy Krieger Institute, near his home in Baltimore. Occupational therapy is essential as Zion’s brain relearns how to communicate with limbs that were missing for six years, and his muscles and tendons gain strength and flexibility.
“We needed to balance the functional side of therapy with the more biomechanical and neurological side to maintain supple joint motion positioning, and encourage development and strengthening of active motion, all while making it fun and exciting for him,” said Lindsey Harris and Gayle Gross, Zion’s occupational therapists at Kennedy Krieger Institute. “We quickly learned Zion’s interest in sports and tapped into that. As a result we started with basketball and progressed to baseball, culminating in his recent accomplishment of throwing out the first pitch at an Orioles baseball game.”
Additionally, a team of CHOP neuroscientists assembled to conduct brain imaging and analysis to track and aid Zion’s mental and physical rehabilitation. For the first time, the team is calibrating functional MRI scans of Zion’s brain and directly correlating his therapy to the brain mapping. This approach is being implemented with the goal that the primary motor cortex, the part of the brain that controls his hands, will catch up to the other fully developed areas.
As Zion grows, so will his hands. Zion continues to receive daily immunosuppressant medications to prevent his body from rejecting the new limbs, as well as his transplanted kidney. Dr. Levin and his team will continue to follow Zion throughout his lifetime.
“Double hand transplantation is a complex procedure involving many surgical and non-surgical components. Zion’s success is a testament to the skill, dedication, innovation and passion of Dr. Levin, Dr. Chang and the rest of their team,” said N. Scott Adzick, MD, CHOP’s Surgeon-in-Chief. “As for the future, our CHOP and Penn teams are carefully reviewing and evaluating all aspects of Zion’s progress and when the time is right hope to offer this same surgery to other children.”
“Zion is a pioneer. With each week since his surgery, our team has learned more that will inform their efforts to perform future bilateral hand transplants and afford more children and adults a better quality of life,” said Abraham Shaked, MD, PhD, the Eldridge L. Eliason professor of Surgery in Penn’s Perelman School of Medicine and director of the Penn Transplant Institute.
“Zion’s progress has been spectacular, highlighting what can be accomplished by the committed and coordinated collaborative effort amongst multi-disciplinary teams at CHOP, Penn Medicine and Shriners Hospitals for Children. The dedication to Zion’s hand functionality and rehabilitation has expanded to the Kennedy Krieger Institute, as well the amazing community that has rallied behind Zion and his family. Their support has been instrumental to Zion’s success. Zion’s remarkable improvement, and his newly found ability to perform tasks previously unobtainable, is inspiring. Shriners Hospitals for Children is committed to continuing to advance this field and hopefully providing future children with the opportunity of this life-changing surgery,” said Scott Kozin, MD, chief of staff, Shriners Hospitals for Children—Philadelphia.
When asked how his life has changed now that he has hands, Zion said, “I’m still the same kid everybody knew without hands. But I can do everything now. I can do the same things even better.” “I believe he could have done anything without hands,” said Zion’s mother, Pattie Ray. “But now his light will shine even brighter. Whatever he is destined to do, it’s going to make it that much better. I know those hands are going to be used in great ways.”
“In the past year, Zion’s accomplishments have inspired pride and joy in his family, his medical team and people around the world,” said Madeline Bell, president and chief executive officer of The Children’s Hospital of Philadelphia. “I could not be more proud of Zion and our team’s commitment to continued innovation and breakthroughs to help children everywhere.”
“Zion’s story has been made possible through a unique collaboration between Penn and CHOP that illuminates what’s possible when we bridge pediatric and adult medicine in new ways,” said Ralph Muller, CEO of the University of Pennsylvania Health System. “No matter the age of our patients, we’re focused on mapping the future of medicine.”
Before the surgery could be conducted, it was first necessary to locate a suitable donor, a function coordinated by Gift of Life Donor Program, the nonprofit organ and tissue donor program which serves the eastern half of Pennsylvania, southern New Jersey and Delaware. Thanks to the generosity of a family in the midst of terrible loss, donor hands became available for Zion.
“For 42 years, Gift of Life Donor Program has partnered with transplant centers throughout this region to bring innovative transplant procedures to patients in need,” stated Richard Hasz, vice president of clinical services for Gift of Life. “As with all types of transplant, surgeries such as this one could not take place without the generosity of a donor and a donor family. We thank them for their selflessness and for their gift that made this surgery possible.”
“People say I’m strong, but you really have to be strong to give the gift they gave,” said Pattie Ray. “I think about them and I thank them every day.”
This is Zion: 1 Year Later
An inspiring one-year update on Zion Harvey, the recipient of the first bilateral hand transplant in a child. http://www.chop.edu/handtransplant
Zion’s hands and feet were amputated when he was 2 as the result of sepsis, a life-threatening infection. He received new hands in July of 2015, during a 10-hour surgery at The Children’s Hospital of Philadelphia. The surgical team was led by L. Scott Levin, MD, and Benjamin Chang, MD, who direct the Hand Transplantation Program at Children’s Hospital.
This update shows Zion’s progress in the year since the surgery.
Zion’s transplant and rehabilitation have involved hundreds of people from organizations including: Gift of Life Donor Program, Kennedy Krieger Institute, Penn Medicine, Shriners Hospital for Children – Philadelphia, United Network for Organ Sharing, and CHOP.
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About Gift of Life Donor Program
Gift of Life Donor Program is the non-profit, federally-designated organ procurement organization, serving 11.2 million people across Delaware, southern New Jersey and the eastern half of Pennsylvania. Its annual donation rate ranks among the highest in the world. Since 1974, Gift of Life has coordinated more than 46,000 life-saving organs for transplant, and approximately one million tissue transplants have resulted from the generosity of donors and their families. One organ donor can save the lives of up to eight people, and a tissue donor can enhance the lives of up to 75 others. For more information or to register, visit donors1.org.