‘I had a double hand transplant’
Eight-year-old Zion Harvey’s dream of swinging on monkey bars ‘just like my friends’ led him to become the first child in the world to receive a double hand transplant. Sarah Gibbons reports on the amazing medical procedure that now offers hope to hundred
Biting his lip in concentration, eight-year-old Zion Harvey picks up his toy guitar and strums it, plucking each string with his fingers to create his own pop tune. Then, finally bored, he rushes to pick up a joystick and starts firing at make-believe enemies in a video game.
An hour later he runs out to join his friends in a game of tabletop football, giggling loudly when he scores a goal.
His mother, Pattie Ray, watches him from a distance. She’s delighted that he’s playing, but worried about his hands. And she has reason to be – they are brand-new.
Until July, Zion, from Baltimore in the US, went about his daily routine relying on the stubs that he had for hands and prosthetic legs. ‘When I was two, I had to get my hands and legs cut off because I was sick,’ he says in a matter-of-fact tone.
Sepsis, a life-threatening infection that he contracted as a toddler, left him with multiple organ failure and gangrene, leading to the amputation of his hands at the wrists and lower legs.
His kidneys too were severely affected and Zion endured two years of dialysis until he underwent a single transplant at four. ‘My mum gave me a kidney,’ he says, cheerfully, giving her a hug.
Zion was fitted with artificial legs and quickly learned to walk, run and jump, but he did not have prosthetic arms. Instead, he learned to eat, write and even play video games using the stubs of his forearms. He could also play Lego with his four-year-old sister Zoe. ‘Challenges have been something of a constant for Zion, but he’s so determined and easily overcomes them,’ says Pattie, a nursing student at a Baltimore community college.
Despite being a popular schoolboy with a steady stream of friends, Zion had to endure cruel taunts as he battled his
In July, THREE MONTHS after going on the waiting list, Pattie got the call she had FEARED would NEVER come despite her son being on TOP of the list – the donor service had found A MATCH
way through life with prosthetic legs and stubs for arms. ‘Some of my classmates don’t mean to say mean things to me but it just slips out I guess,’ he says.
‘Everybody has their own way of thinking.’
Then one day early last year, Zion was watching television with his mother when he said, ‘I wish I could have a real pair of hands so I can swing on the monkey bars like other kids, throw a football with my own hands’, says Pattie.
Determined to help her son realise his dream, Pattie approached the Children’s Hospital of Philadelphia (CHOP), asking if the doctors could help her son in some way.
The hospital did a series of rigorous medical screenings and listed Zion as a possible recipient of the first paediatric bilateral hand transplant. ‘I took the decision from a medical standpoint, but ultimately, to have the surgery was Zion’s decision,’ says Pattie. ‘He wanted to do what other children could do without so much trouble.’
Amajor factor in determining a patient’s suitability for a transplant is the risk of the body rejecting new tissue. However, ‘Zion’s earlier kidney transplant following his infection made him [an ideal candidate] because he was already taking anti-rejection medication’, says Dr Benjamin Chang, co-director of CHOP’s Hand Transplantation Programme.
‘This was not just a technical exercise for us. It’s about restoring a better level of lifetime functioning.’
Zion was referred to Shriners Hospital for Children – Philadelphia for their expertise in paediatric orthopaedic care, including surgery and rehabilitation. Shriners and CHOP then evaluated Zion for 18 months before he was deemed a candidate for the surgery.
But first, it was necessary to identify a suitable donor, and this process was co-ordinated by the Gift of Life Donor Program, the non-profit organ and tissue donor service, which serves the eastern half of Pennsylvania, southern New Jersey and Delaware in the US.
Among other things, the potential donor had to match, Zion’s size and skin colour.
In July, three months after going on the waiting list, Zion’s mum received the call she had feared would never come, despite him being on top of the list.
‘It was from the hospital and the message was brief: a match had been found,’ says
Pattie. ‘I was elated; it meant my Zion was a step closer to realising his dream.’ She quickly made an appointment with Zion’s doctor the same day and after some preliminary tests, the boy was admitted to CHOP to prep for surgery and make history.
The donor limbs reached the hospital by a special ambulance and were kept ready for attaching to Zion’s stubs.
The donor’s family chose to remain anonymous, but their identity didn’t trouble Zion. ‘I am just so grateful to them for giving me this special gift,’ he says.
Zion was never worried about the outcome of the path-breaking operation. ‘If it gets messed up, I don’t care because I have my family,’ he had said.
Pattie was told of the risks associated with undergoing such a complex procedure. Doctors had warned her that his small body could reject the new limbs and lead to further organ failure, while the powerful drugs carry a risk of infection and potential links to cancer in later life.
‘But I felt it would be worth the risks,’ she says. ‘It was ultimately his decision. I was the mother and I had the role of meeting with these guys [doctors] and going over all of the risks and all of the possibilities.
‘After checking with the doctors that it was no more of a risk than a kidney transplant, I felt like I was willing to take that risk for him if he wanted it – to be able to play monkey bars and football.’
In early July, the operation theatre at CHOP was prepared for the 11-hour surgery. Led by Dr L. Scott Levin, chairman of the Department of Orthopaedic Surgery at Penn Medicine, and director of the Hand Transplantation Program at CHOP, a highly skilled team of a dozen surgeons, eight nurses and three anaesthesiologists, along with more than 15 medical assistants donned their scrubs as Zion was wheeled into the operating room.
‘We know what we have to do today,’ Dr Levin told his team before the operation began. ‘I know everybody assembled here has a commitment to this patient and making this a reality for this little boy. We can have complications. We can fail. We can have trouble. ‘But we’re not planning on it.’ The surgical team was divided into four simultaneous operating teams – two focusing on the donor limbs, and two on Zion and his body receiving the new hands. They worked on the left and right sides of his body at the same time.
First, the forearm bones, radius and ulna were connected with steel plates and screws. Then, the arteries and veins were sewn using thread thinner than a human hair. Once blood flow was established, each muscle and tendon was reattached, followed by the nerves.
The procedure is so complicated that the doctors created tags with descriptions such as ulnar artery, and attached them to the various vessels, bones, nerves and tendons that needed to be connected.
After the surgery, the new hands were covered in a protective plaster cast.
Ten hours after doctors made the first incision on Zion’s right hand, Dr Levin detected a sign of success:
the child’s new hand was pink and when a surgeon pressed the palm, it turned white briefly and then pink again, indicating capillary refill or blood flow in the newly attached appendage. The doctors were all smiles.
An hour later, at 4.30am, Dr Levin strode down the hospital corridor and opened the door to a private room. ‘There’s some good news,’ he said, turning to Pattie.
‘Your little guy has his hands. He woke up smiling. There hasn’t been one whimper, one complaint.’
Breaking into a broad smile and then tears, an emotional Pattie extended her hand to shake that of the surgeon, then embraced him warmly.
Within a few days of the pioneering op, Zion was showing doctors how he could wiggle his fingers, gently grip items like a piece of sponge in his new hands, scratch his face using his own fingers.
How does it feel to have hands of his own? ‘I’m the same person who I still used to be, but with some cool, new hands,’ Zion says. His mother was more emotional. ‘It felt surreal to see Zion with new hands.
‘I see my son in the light I haven’t seen him in years. It was like having a newborn. It was a very joyous moment for me. I was happy for him.’
A week after the surgery, Zion paraded in front of TV crews filming the latest chapter in his incredible journey to recovery, and gratefully waved his hands that were heavily wrapped in swathes of bandages. ‘I want to say to you guys thank you for helping me through this bumpy road,’ he said.
‘I’m really amazed at what I can do so there are tears of joy all the time.
‘Waking up with new hands was weird at first, but then good. Now I just want to climb and swing on the monkey bars and pick up little bits of Lego.’
Following his operation, Zion spent a week in CHOP’s paediatric intensive
‘I want to say to you guys THANK YOU for helping me through this BUMPY road. I’m AMAZED at what I can do so there are TEARS of JOY all the time. Now I just want to SWING on the MONKEY BARS’
care unit before being moved to a medical unit and then to an inpatient rehabilitation unit, where he underwent rigorous physical therapy several times a day, moving his fingers and bending his wrist, pushing against the force of medics’ hands in a series of painful exercises. It was an essential step towards gaining greater use of his new limbs and towards autonomy.
Three weeks later he was back home in Baltimore with Zoe, learning to write once again – this time using his hands – and playing soccer in the backyard with his friends.
‘I just want to say this, never give up on your dreams,’ he says. ‘They will come true.’
However, the medication and physiotherapy sessions are far from over. Dr Levin and his team are monitoring Zion’s progress on a monthly basis in the short term, and will continue to do so annually throughout his lifetime. He will continue to take daily immuno-suppressant drugs to help reduce the risk of rejection.
Although so far his body has accepted the new limbs, Zion’s doctors warn that this is just the start of a long journey as the hands grow with Zion through his childhood and into adolescence, as the growth plates produce new bone and tissue. Already, Pattie has noticed that Zion’s fingernails need clipping.
Dr Levin, who described the 11-hour procedure as the ‘highest echelons of micro-surgery’, said, ‘When you do this kind of transplant as a surgeon, your patients become members of your family and I say that with enthusiasm.
‘Zion gives hope to other children and I hope he’s the first of literally thousands of patients.’
Zion does not yet have full use of his hands because it will take up to eight months for the nerves in his fingers to regenerate. But the doctors are pleased with the progress he is making. Experts say that the process of nerve regeneration that restores feeling can take up to two years.
Already Zion has his sights set on his next goal – convincing Pattie to buy him and Zoe a puppy.
When she laughs and asks where he thinks it would live, Zion flashes her one of his enchanting, impish smiles and says, ‘In my room, where else?’
It seems that it’s just a matter of time until Zion welcomes a new furry family member into his heart and home. He may set his sights really high, but his dreams do come true.
‘When you do this kind of TRANSPLANT as a surgeon, your PATIENTS become MEMBERS of your family. I HOPE Zion is the first of literally THOUSANDS of patients’