Zion Harvey…an archetypal eight-year-old in so many ways…yet wistfully distinctive in so many others…was the recipient, last week, of a gift like no other.
As a toddler (age 2), Zion horrifically lost both hands and both feet to Sepsis…a life-threatening complication from infection. Two years later, the infection severely damaged his kidneys and required a kidney transplant…the organ donated by his mother, Pattie Ray.
Despite unimaginable misfortune, Zion is bursting with bravura…with determination…with a gutsiness that most could never muster.
Zion has already been successfully fitted for prosthetics for his feet and utilizes them to the fullest.
Approximately three years ago, Pattie began the search for prosthetic hands for her son. She approached Dr. Scott Kozin, Chief of Staff at Shriners Hospital for Children in Philadelphia who, along with his partner, Dr. Dan Zlotolow, offered a far more progressive suggestion…Vascularized Composite Allotransplantation…make Zion the youngest recipient of a bilateral hand transplant.
Drs. Kozin and Zlotolow referred Pattie and Zion to the Children’s Hospital of Philadelphia Hand Transplantation Program…led by Dr. Scott Levin.
Dr. Levin… the Paul B. Magnuson Professor, chairman of the Department of Orthopaedics, and professor of surgery (Plastic Surgery) at Penn Medicine…carefully assessed and evaluated Zion as a potential candidate.
According to the Children’s Hospital of Philadelphia web site, “Dr. Levin began assembling the massive and highly experienced team that would perform the surgery and care for Zion afterwards. It included hand surgeons (both orthopedic and plastic surgeons), nursing staff, pediatric anesthesiologists, occupational and physical therapists, social workers, pharmacists, psychologists, child life specialists and others.”
The team held several “rehearsals” and ensured that they were fully prepared for the procedure. 3D models were created to assist in identifying donor hands.
After a 10 1/2 hour surgery…including a team of 40 people…inclusive of 10 surgeons…the hands and forearms, sadly once belonging to another child, now belonged to Zion.
I was very fortunate to have an opportunity to speak with Dr. Levin…to discuss the miraculous procedure…to share in his excitement and his proud moment…to marvel at the gift that was given to an 8 year-old boy wanting desperately to be like all of the other 8 year-olds around him.
Gary Levine: Dr. Levin…I believe that I read, a while back, about an Iraqi war veteran who lost both arms in a road-side bomb incident. He had double-arm-transplant surgery at Johns Hopkins at the end of 2012. I can’t recall hearing more about it…but how does a surgery like that differ from Zion’s surgery, if at all?
Dr. Scott Levin: “Well…the principles are the same. Different amputees, who elect to undergo hand transplantation…their amputations are at different levels. So, the first patient that we did at Penn, a few years ago, Lindsay S., who has done extremely well…her amputations were right below the elbow. So, that strategy required that her nerves grow into the donor arms and re-innervate the muscles. In Zion’s case, his amputations were quite distal, so all of his muscles were intact and he required a hand and tendons…but the muscles that power the hand…and make the fingers flex and extend…they were there and that’s what he’s learning to use now. So the re-innervation phenomenon in Zion is just for sensation…or what we call ‘sensibility.’ It’s just for sensibility. It’s not to make muscles move…with the exception of re-innervating some very small muscles in the hand that give the hand the ability to do fine motor skills…like picking up a penny. We’re relying on that re-innervation to take place, however, Zion being a child, has a very high propensity to regenerate these nerves, much better than an adult would, and so that’s an advantage for him.”
Gary Levine: I was trying my best to read about…and understand…immunosuppressive treatment used for such transplants. Is there a layman’s explanation for the protocol that was used to reduce the likelihood of Zion rejecting these limbs?
Dr. Scott Levin: “Yes…well there are two types of immunological reaction: cellular and humoral and there are cells in the body that will attack foreign material such as a kidney or a heart or a hand. So, the therapy is directed with different mechanisms of action to thwart the body…or confuse the body…or block the body from rejecting a transplant. That’s the basic mechanism”
Gary Levine: How long will Zion need to take these medications to prevent rejection?
Dr. Scott Levin: “He will take drugs for the rest of his life. But, remember…Zion already had a kidney transplant…so he’s been on these medications for quite some time.”
Gary Levine: Please tell me about the potential for rejection. How long does it take before symptoms of rejection normally appear? And, in such a case, how do you proceed?
Dr. Scott Levin: “Well, we expect, in this new field of VCA (Vascularized Composite Allotransplantation) or hand-based transplant…we anticipate and…parenthetically…all patients reject, but the good news, about hand transplants, for example, is that we can see swelling…we can see a rash…we can see changes that alert us that rejection phenomenon is going on, and so we may add systemic drugs, but we can also add…because the hands are hands…not a solid organ…we can add topical creams…like topical steroids…topical anti-rejection medicines that penetrate the skin and thwart or stop the rejection process.”
I hadn’t considered the benefits of being able to physically observe an external transplant…as opposed to internal organ transplants that are not visible and require symptoms to signal rejection.
Gary Levine: Sadly, there must have been many children in need of such surgery. What made Zion such a good candidate?
Dr. Scott Levin: “Well, he was already immune-suppressed…he already has a kidney transplant so he was taking the drugs we just talked about. So that was one barrier that we didn’t necessarily have to cross.”
Dr. Levin paused…and used the moment to gather his thoughts and remind us of the significance of this gift. The vignette that followed makes one feel ungracious and unmindful of the blessings that we have…
“This little boy is motivated to be like other children and use each hand independently…and toilet himself…and feed himself…and clothe himself…and write with a pencil and go to school and do all of the other things that children do. And he told me that he wants to swing on the monkey bars and throw a football. It’s hard to do that with prosthetic limbs.”
Gary Levine: Lastly, understanding that every patient and every surgery is different, of course…but what is Zion’s timetable in the way of sensation, movement and usage? And how close to 100% usage can we realistically hope for?
Dr. Scott Levin: “Well, peripheral nerves, in normal circumstance, regenerate at a millimeter a day. And children have better propensity to regenerate nerves…to get back sensation in the fine muscles…in his hand, the small muscles that are innervated…he’s much more likely to do that than an adult would. In terms of you asking me if he will be 100%…that’s a very difficult question to answer. I think that his functional capacity will be greater with his hand transplant…the end result will be based on many months of therapy and progress with his therapist. He is an extremely motivated young man and whether he’ll ever be 100%…he’ll be able to socially integrate into society and care for himself independently much better with these hands than without.”
Dr. Levin continued…
“The bottom line is that this has already been a huge success in terms of having viable hands. He’s already starting to manipulate objects…to use his hands as God intended them to be used. It will be months and months of hard therapy but, at the end of the day, the reason that our team transplanted hands onto Zion Harvey is to see him use his hands like most human beings. And whether he’s 100% or 80%, he’s much better than he would have been without them.”
Special thanks to Ashley Moore, Public Relations Specialist at the Children’s Hospital of Philadelphia and, of course, to Dr. Scott Levin who, despite being swamped, took time to share this inspiring story!
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