Published on in CHOP News
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.
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.”
Ashley Moore, The Children’s Hospital of Philadelphia: Moorea1@email.chop.edu 215-630-4683
Abbey Anderson, Penn Medicine: Abbey.Anderson@uphs.upenn.edu 215-349-8369
Becky Melvin, Kennedy Krieger Institute: MelvinB@kennedykrieger.org 904-228-5241
Stephanie Byrwa, Shriners Hospital for Children – Philadelphia: sbyrwa@shrinenet.org 215-983-0401
Media B-roll, Photos and Illustrations
Zion Update YouTube Video
The Children's Hospital of Philadelphia was founded in 1855 as the nation’s first pediatric hospital. Through its long-standing commitment to providing exceptional patient care, training new generations of pediatric healthcare professionals and pioneering major research initiatives, Children's Hospital has fostered many discoveries that have benefited children worldwide. Its pediatric research program is among the largest in the country. In addition, its unique family-centered care and public service programs have brought the 535-bed hospital recognition as a leading advocate for children and adolescents. For more information, visit http://www.chop.edu
Penn Medicine is one of the world's leading academic medical centers, dedicated to the related missions of medical education, biomedical research, and excellence in patient care. Penn Medicine consists of the Raymond and Ruth Perelman School of Medicine at the University of Pennsylvania (founded in 1765 as the nation's first medical school) and the University of Pennsylvania Health System, which together form a $5.3 billion enterprise.
The Perelman School of Medicine has been ranked among the top five medical schools in the United States for the past 18 years, according to U.S. News & World Report's survey of research-oriented medical schools. The School is consistently among the nation's top recipients of funding from the National Institutes of Health, with $373 million awarded in the 2015 fiscal year.
The University of Pennsylvania Health System's patient care facilities include: The Hospital of the University of Pennsylvania and Penn Presbyterian Medical Center -- which are recognized as one of the nation's top "Honor Roll" hospitals by U.S. News & World Report -- Chester County Hospital; Lancaster General Health; Penn Wissahickon Hospice; and Pennsylvania Hospital -- the nation's first hospital, founded in 1751. Additional affiliated inpatient care facilities and services throughout the Philadelphia region include Chestnut Hill Hospital and Good Shepherd Penn Partners, a partnership between Good Shepherd Rehabilitation Network and Penn Medicine.
Shriners Hospitals for Children is dedicated to improving the lives of children by providing pediatric specialty care, innovative research and outstanding medical teaching programs for medical professionals. Children up to age 18 are eligible for care and receive all services in a family-centered environment, regardless of the patients’ ability to pay. For more information visit, shrinershospitalsforchildren.org/Philadelphia.
Internationally recognized for improving the lives of children and adolescents with disorders and injuries of the brain, spinal cord and musculoskeletal system, Kennedy Krieger Institute in Baltimore, MD, serves more than 20,000 individuals each year through inpatient and outpatient clinics, home and community services and school-based programs. Kennedy Krieger provides a wide range of services for children with developmental concerns mild to severe, and is home to a team of investigators who are contributing to the understanding of how disorders develop while pioneering new interventions and earlier diagnosis. For more information on Kennedy Krieger Institute, visit kennedykrieger.org.
Since 1974, Gift of Life has served as the link between donors and patients awaiting life-saving transplants in the eastern half of Pennsylvania, southern New Jersey and Delaware. Gift of Life Donor Program is the nation’s most active and well-respected organ procurement organization, coordinating more than 42,000 life-saving organ transplants and approximately 600,000 tissue transplants during the last 42 years. For more information on organ and tissue donation, please call Gift of Life at 1-800-DONORS-1 or visit its website, www.donors1.org.
Contact: Ashley Moore, The Children’s Hospital of Philadelphia, 267-426-6071 or moorea1@email.chop.edu