Zion’s story: The gift of hands

Zion’s story: The gift of hands

Zion’s story: The gift of hands

(Originally published July, 2015. View latest update on Zion's progress.)

An 8-year-old boy holds a mini football in the palm of his hand, gently squeezing it between thumb and fingers, dreaming of the day he can get out on the field and throw a pass. It’s an utterly ordinary scenario, except for one thing: only a few weeks ago, this child had no hands.

  • World’s first bilateral hand transplant on a child: Zion’s story

    L. Scott Levin, MD, FACS: We have some good news for you.

    Zion Harvey, Patient: Close up, far away. Close up, far away.

    Pattie, Mother: Call Zoe, Zion.

    Zion Harvey, Patient: Zoe. Close up.

    Pattie, Mother: Come on, come on.

    Zion Harvey, Patient: I wasn’t, I wasn’t always like this. When I was 2, I had to get my hands cut off because I was sick.

    I don’t know what a child hand looks like. It could be this color, or this color. I don’t know.

    Christine McAndrew, PA-C: How to make a muscle.

    L. Scott Levin, MD, FACS: Over here, let me see how strong you are.

    Christine McAndrew, PA-C: We have followed Zion for probably about a year-and-a-half now, and done extensive evaluations to see if he was a good candidate for hand transplant.

    Zion Harvey, Patient: So, when I get this hands, I will be proud of what hands I get. I will be proud.

    Pattie, Mother: I will be too. Because they’re going to be your new hands. You excited?

    Zion Harvey, Patient: And if it gets messed up…

    Pattie, Mother: It’s not going to be messed up. You excited?

    Zion Harvey, Patient: I don’t care because I have my family.

    Benjamin Chang, MD: As far as we know it’s never been even attempted in a child. One of the things that’s unique about Zion is that he already had kidney transplants. He’s on medication for rejection. So essentially we could piggy back off that same medication. Our concerns about doing these hand transplants in anybody is that once you do it, the patient has to stay on life-long medications so they don’t reject. And those medications increase the risk of infection, and they also increase your risk of having some cancer develop later on in life. And so for a child that’s a very, very difficult decision.

    L. Scott Levin, MD, FACS: Stand up straight. Let me see your arm. Now, I want you to make a fist for me, like this. Good, relax.

    When I met Zion, I said, “Why do you want hands? Zion why do you want hands?” He’s a very, very intelligent young man. He said, “I want to swing on the monkey bars.”

    Zion Harvey, Patient: My grandmother says I’m smarter than a lot of grownups. I’m really smarter than a lot of grownups.

    L. Scott Levin, MD, FACS: You know that’s sort of a milestone for a lot of kids. And why shouldn’t he be like another child and, you know, our hope is over time that indeed he will be able to do that.

    Zion Harvey, Patient: And that’s a TV camera. He wants to know if he’s on TV.

    Pattie, Mother: This is just like another hurdle that he jumps. He’s jumped so many hurdles. He’s so amazing. This isn’t the first amazing thing that he’s done. He’s been doing amazing things since he’s been sick. I don’t know many adults that can handle half of his life on a-day-to-day basis.

    Zion Harvey, Patient: Like sometimes, I just think some of my classmates, they don’t mean to say mean things to me, but it just slips out. So either, either somebody says something to me, and then I just figure it slipped out and they didn’t mean to say it. Everybody has their own way to thinking things.

    Pattie, Mother: It’s true.

    L. Scott Levin, MD, FACS: Each year there are only 15 children, based on the databases, that would even be eligible to donate hands. And then it comes down to the organ procurement organizations approaching families at a terrible time, the loss of a child. Just stop and think about that. So the fact that he was put on the waiting list for hands in April, and three months later this came along. That in and of itself is a remarkable story.

    Pattie, Mother: Chrissy called me and she’s like, “OK we have a match.” I’m like, “Stop playing, Chrissy.” She’s like, “No, I’m serious.”

    Benjamin Chang, MD: We have about 12 surgeons. And, you know, a whole bevy of nurses, at least eight nurses, circling in and out. And then a team of anesthesiologist. I think at least three or four of them that will be working throughout the night. So, it’s a large team.

    L. Scott Levin, MD, FACS: There’s an expression in surgery, “Preparation is the only shortcut you need.” And particularly in surgery and in highly complex operations, you know, we prepare.

    Benjamin Chang, MD: So we’re about to get started. Zion has just come into the room. And they’re starting to put intravenous lines in and get ready for the surgery. We’ll prepare the donor limbs and the recipient’s sites, and then do the actual transplantation. So, expect to be here all night, but hopefully at the end we’ll have two hands on two arms.

    L. Scott Levin, MD, FACS: OK, hi

    Nurse: Good to see you, doctor.

    L. Scott Levin, MD, FACS: How are you? Ready?

    Nurse: Good.

    L. Scott Levin, MD, FACS: We’ve rehearsed. We know our steps. We know each other. We know what we have to do today. And I think everybody assembled here has committed to this patient and making this a reality for this little boy. We can have complications. We can fail. We can have troubles. But we’re not planning on it. So, everybody is familiar with their particular role. And I just want to say in advance, we’ll do our best and we’re all here together.

    This is a new arena of reconstructive surgery. It’s a new arena in transplant surgery. This gives new hope not only to the adults, but particularly children. There are ethical issues and questions about the implications for that, but that deceased child’s hands and expression, if you will, will live on in Zion. And that’s a pretty profound thing when you think about it.

    Benjamin Chang, MD: In the beginning of the operation, we actually had four teams operating at the same time. And each of them had specific things they were supposed to do. So they had to find all the structure. Put pre-made tags on for every single structure that we’d have to repair. And they would have to sew those onto the nerves, blood vessels, tendons, etc. L. Scott Levin, MD, FACS: It’s one thing to sew adult vessels, which in and of themselves are small and they require this kind of skill. But the highest echelons of reconstructive microsurgery take place in children, small children. And my colleagues who participated in the microvascular aspects of the care are just the best in the world.

    Benjamin Chang, MD: The blade goes here, so we’re going to have to cut this really short.

    L. Scott Levin, MD, FACS: Blood is going across the hook-up here. And you can see the hand right here starting to pink up. You see the capillary refill? You see that? See it’s white when I touch it, and then it pinks up. And now that’s starting to get out to the level of the fingers.

    Pattie, Mother: How’s my baby?

    Nurse: Zion’s doing great. He’s doing well.

    Benjamin Chang, MD: Just came out to give you an update. So we’ve gone through a lot so far. You know, we broke this thing in down into four different parts. We’re on this last part here. So at this point, the hands have already been attached, so the bones are back together. And Dr. Levin and the other microsurgeons are working on putting the arteries and veins together.

    You ought to really make sure that this was going to work for our patient and work for a lifetime, not just a year. For us this is not really just a technical exercise. It’s really trying to, you know, restore a better level of lifetime function for these patients.

    L. Scott Levin, MD, FACS: I think all of you who know about microsurgery, and all of you do know that we’re not out of the woods, and this is sort of just the first step. And we have to be very vigilant, and we have a whole protocol on how to take care of this little guy, but from the bottom of my heart, thanks.

    We have some good news for you. Your little guys has two hands.

    Christine McAndrew, PA-C: Hi, Zion

    L. Scott Levin, MD, FACS: And so, what might we say about Zion Harvey in 10 years or 15 years? What might we say about this? I hope he is the first of literally hundreds or thousands of patients that are going to be afforded this operation.

    Therapist: All right, up, up, up, up, up, nice. No hands, that’s all you.

    Therapist: Don’t let me get it.

    Pattie, Mother: Don’t let him take it.

    Therapist: Don’t let me get it.

    Pattie, Mother: Tug of war.

    L. Scott Levin, MD, FACS: He’s in no better place than in The Children’s Hospital of Philadelphia to make sure he gets through this and does well.

    Zion Harvey, Patient: Me and Zoe want a puppy.

    Pattie, Mother: Where’s the puppy gonna live?

    Zion Harvey, Patient: In my room, where else?
Transcript Transcript

In 2008, at the age of 2, Zion Harvey developed sepsis, a life-threatening infection that attacked his entire body and eventually required amputation of both of his hands and his legs below the knee. The infection also damaged Zion’s kidneys and two years later, he underwent an organ transplant, receiving a kidney from his mother, Pattie Ray.

Hand Transplant Patient Playing on iPad

Despite this rocky start, in the years that followed Zion grew strong and healthy. A happy and outgoing child, he adapted well to life without hands, learning to eat, write and even play video games with his residual limbs. He figured out ways to perform most of the activities other kids his age could do. (Zion received prosthetics for his feet, and was able to walk, run and jump with complete independence.)

A radical idea

In 2012, Pattie brought Zion, now 6, from their home in Baltimore to see Scott Kozin, MD, a surgeon and chief of staff at Philadelphia Shriners Hospitals for Children — Philadelphia, and his partner, Dan Zlotolow, MD. They came to talk about fitting Zion with prosthetic hands, but the doctors had a different and radical suggestion: a hand transplant.

This extremely rare procedure, also known as vascularized composite allotransplantation (VCA), is being performed by only a few surgical teams around the world — and none had performed it in a child. The operation requires exceptional expertise in complex microvascular surgery and hand surgery, connecting muscles, tendons and blood vessels — the latter with sutures finer than a human hair. Patients undergoing the surgery also require a vast network of support services.

Dr. Kozin and Dr. Zlotolow referred the family to the Hand Transplantation Program at The Children’s Hospital of Philadelphia. Led by director L. Scott Levin, MD, FACS, who is also the Paul B. Magnuson Professor, chairman of the Department of Orthopaedics, and professor of surgery (Plastic Surgery) at Penn Medicine, the program combines the expertise of CHOP’s Division of Plastic, Reconstructive and Oral Surgery and the Orthopedic Center with that of physicians in Penn’s Transplant Institute. Dr. Levin is a world-renowned authority in the field, having performed Penn’s first bilateral adult hand transplant in 2011.

A careful evaluation

Doctor examining Hand Transplant Patient

Over the course of 18 months, Zion underwent extensive evaluation of his medical condition and level of function without hands, and of his and his family’s readiness to cope with the transplant process and its aftermath.

Paradoxically, the unfortunate circumstances that resulted in his needing a kidney transplant proved to be in some ways fortuitous for Zion. In hand transplantation, doctors must weigh the potential benefits of the transplant surgery against the risks of immunosuppression medication patients must take for their entire life to prevent rejection. Zion was already taking immunosuppressants for his transplanted kidney, making the decision about hand transplantation less complicated in terms of the adverse effects of these medications.

Dr. Levin and his team quickly came to believe Zion was an excellent candidate for what would be the first pediatric bilateral hand transplant ever performed in the world. “As far as we know, it’s never even been attempted in a child,” says surgeon Benjamin Chang, MD, co-director of CHOP’s Hand Transplantation Program.

“The only shortcut”

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 skills necessary to perform such a complex surgery at CHOP come from lessons learned over the past 20-plus years of performing pediatric solid organ transplantation,” says Abraham Shaked, MD, PhD, director of Penn’s Transplant Institute.

The OR team gathered several times for rehearsals, planning and practicing every step of the operation they would perform on Zion. Physicians at CHOP created 3D hand models, based on Zion’s measurements, to help identify appropriate donor hands. “There’s a saying in surgery,” says Dr. Levin. “’The only shortcut is preparation.’”

When Dr. Levin was convinced that the team was fully ready, Zion was listed for transplant with the United Network for Organ Sharing (UNOS), and the wait began.

Acquiring donor hands that were a match for Zion would be challenging. Considering factors of blood type, size, skin color and gender, Dr. Levin estimated that no more than 15 potential donors a year would be available nationwide. The difficult search, which would be expertly managed by the Gift of Life Donor Program, might take years.

But just three months later, Pattie received a call from Hand Transplantation Coordinator Christine McAndrew, PA-C: “Come to CHOP right away — a donor has been found.”

A historic surgery

Surgeons Performing Hand Transplant Surgery

Led by Dr. Levin, the landmark surgery lasted 10 and a half hours, with 40 people — including 10 attending surgeons — performing various parts of the procedure. The hands and forearms were attached by connecting bones, blood vessels, nerves, muscles, tendons and finally, skin. After the first blood vessels between Zion’s arms and the donor hands were connected, the team was encouraged as the palms and fingers gradually turned pink — blood was circulating as it should.

Just a few days after the operation, Zion was already displaying his resilience and positive attitude as he adjusted to the incredible experience of having new hands. In daily sessions with CHOP physical and occupational therapists, he works hard, slowly gaining movement and strength in each hand, learning to pick up and hold objects. His therapy will be ongoing for many months. He will also be monitored closely for any signs of rejection or other complications.

The challenges facing Zion are new, but his determination isn’t. “He’s already done so many amazing things,” Pattie says of her son. “This is just one more hurdle he’s jumped.”

View an update from one year after Zion's hand transplant surgery.