First child ever to receive double hand transplant after losing limbs to sepsis making ‘astonishing progress’

By MIA DE GRAAF FOR DAILYMAIL.COM

He was the youngest person ever to undergo a double hand transplant.

Eighteen months later, researchers have published the first report documenting nine-year-old Zion Harvey’s unprecedented experience.

He has endured numerous scares of his body rejecting his new limbs, and hours of struggling to learn how to grip.

But in a new report published by The Lancet, his team at the Children’s Hospital of Philadelphia insist they are astounded by his abilities less than two years on.

He can already write, feed himself, dress himself, play baseball and throw a football.

Speaking to Daily Mail Online on Tuesday, lead surgeon Dr Scott Levin who came up with the idea to try such a risky operation said even he was surprised by the success.

‘I don’t think we could have asked for a better outcome by this point, a better patient, a better family.

‘In all transplantation there are ups and downs, but this is a very positive story – so much so that we had a bit of a moratorium with other children. We need to work slowly, we don’t want to get ahead of ourselves.

‘But we are encouraged that it has been such a success and we are already evaluating many other children for the same procedure.’

Zion, from Baltimore in Maryland, lost his hands and his feet when he was just two years old to a life-threatening sepsis infection that also led to a kidney transplant.

Since he was already taking immunosuppressant drugs to stop his body from rejecting the kidney, doctors said he was a perfect candidate for another type of transplant.

In 2015, at the age of eight, he underwent the 10-hour hand transplant surgery.

Following months of occupational therapy and psychological support, the precocious little boy has pushed through numerous setbacks.

According to the new study, published in The Lancet Child and Adolescent Health journal on Tuesday night, Zion has been treated for numerous close rejections of the hands, and extensive rehab to help him learn to use his hands.

Previously, this type of transplant had been used for single limbs between identical twins and in adults.

In another case involving a teenager who received a donor limb, there were severe complications and the patient died soon after surgery.

Before Zion’s transplant, he could barely dress himself, feed himself or wash himself, and was forced to use his residual limbs or specialist equipment.

His mother Pattie Ray hoped the surgery would let him be able to dress, brush his teeth, and cut food independently.

Zion, meanwhile, was particularly concerned about being able to climb monkey bars and grip a baseball bat.

Dr Levin said he believes the most important thing Zion has gained is dignity.

‘He can toilet himself. It sounds simple but really, that’s amazing, he’s made big strides. He has dignity now.

‘Before, when he was a little guy at school he had to ask one of his friends or a teacher to help him. It was the same if he wanted to eat or pick something up. As he ages and matures, he wants a certain degree of dignity, and now he has that.’

Writing in The Lancet, Dr Sandra Amaral, a member of the team at CHOP, said that, while Zion is in incredible shape, she wants to highlight the struggle he has been through.

‘This surgery has been very demanding for this child and his family.’

While his function now surpasses what he was able to do before his transplant, he faced a six-month period of reduced abilities immediately after the surgery, as well as various set-backs.

After Zion was approved for the surgery, his team had to wait for a donation from a deceased patient.

The operation involved four medical teams working simultaneously on the donor hands and Zion, spanning 11 hours.

Six days after the transplant, Zion began daily occupational therapy, including video games and exercises using finger lights and puppets, as well as daily tasks such as writing and using a knife and fork.

He and his mother also met regularly with a psychologist and a social worker to help him cope with the transplant, and plan for his re-integration at school.

Within days of the surgery, he was able to move his fingers using the ligaments from his residual limbs.

Regrowth of the nerves meant that he could move the transplanted hand muscles and feel touch within around six months, when he also became able to feed himself and grasp a pen to write.

By eight months, he could use scissors and crayons, and within a year of the surgery, he could swing a baseball bat using both hands.

Functional brain imaging has revealed that Zion’s brain has developed pathways for control of hand movement, and for carrying touch sensation signals from the hand back to the brain.

Since his surgery he has undergone eight rejections of the hands, including serious episodes during the fourth and seventh months of his transplant.

All of these were reversed with a topical cream and steroid treatment without impacting the function of his hands.

He remains on four immunosuppression drugs, including a steroid which can impact growth and bone health. Doctors plan to reduce the use of the boy’s immunosuppression drugs when possible.

They said he has faced some minor infections and some impairment to his transplanted kidney as a result of the increased immunosuppression.

However, Dr Levin said that those minor episodes were barely a dent in his journey, and his kidneys are in the best condition they could have hoped for.

He concluded: ‘This has changed his life, and it really has been a team effort. So many people were involved in reaching this point. I really think the future in the field of vascularised composite allotransplantation is very very bright. There are always challenges and always risks but at the end of the day, Zion is an example of what can be done.’