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Owings Mills boy first recipient of double hand transplant on a child

8-year-old Owings Mills boy dreams of throwing football after receiving double hand transplant.

Zion Harvey strained to grasp the slice of sausage pizza, his fingers clamping down only part of the way before a therapist jumped in to help press them completely together.

Using hands is new — and difficult — for 8-year-old Zion because it wasn't so long ago that he didn't have any. When he was 2, doctors amputated his hands and feet after a sepsis infection caused him to develop gangrene.

But earlier this month, doctors at Children's Hospital of Philadelphia performed the first-ever pediatric double hand transplant on Zion, who now looks in awe at his new fingers and thumbs. The Owings Mills boy is spending his days working with occupational therapists to learn to use his new hands.

The surgery — publicly announced Tuesday — was the latest in the small, but growing, transplant field, which has moved beyond internal organs to extremities like hands, arms and even faces. In 2013, a group of Johns Hopkins doctors transplanted arms on a soldier hurt in the Iraq war. The University of Maryland Medical Center performed a face transplant on a man in 2012. The lead surgeon on Zion's procedure, L. Scott Levin, said he had gained insight after performing a hand transplant on a woman in 2011.

More than 100 people worldwide have received upper-extremity transplants since the first was performed in France in 1998, according to Johns Hopkins Medicine.

"This is a monumental step," said Levin, chairman of the Department of Orthopaedic Surgery at Penn Medicine and director of the Hand Transplantation Program at the Children's Hospital of Philadelphia. "I hope personally we can help many more patients like Zion in the future."

A precocious child with a round face and bright eyes, Zion never let the fact that he had no hands slow him down much. He could strum a guitar, play foosball, scroll through his mom's iPhone and feed himself.

But kids at school sometimes made fun of him. And there were some things he couldn't do, such as climb the monkey bars or throw a football like Baltimore Ravens quarterback Joe Flacco.

Mom Pattie Ray, wanting her son to do things other children could, took him to Shriners Hospitals for Children in Philadelphia looking for suitable prosthetics. The boy had never found a pair he liked. The doctor soon introduced her to Levin at the neighboring hospital, who began talking to the family about the possibility of a hand transplant.

"We came for prosthetics and the next thing we knew we were getting hands," said Ray, a 26-year-old medical worker.

She was nervous, but wanted something better for Zion.

Ray said her son has had "a tough ride, but he does not let it get him down. He doesn't put on a sad face. But as a mother you want to see your child better."

Zion underwent a kidney transplant at age 4 and was already taking drugs to prevent his body from rejecting the new organ, making him a good candidate for hands. A child's potential response to these drugs is often a concern for doctors.

Only about 15 children a year are eligible to donate hands, so doctors weren't sure when one would become available. They had to find hands that were the right color and size for Zion.

While waiting for a match, the surgery team practiced the procedure on cadavers. They developed a step-by step playbook for the day of surgery.

Then the call came: Hands were available. Ray was both nervous and excited. Zion was preoccupied with plans for a sleepover he would now have to miss, and it wasn't until he arrived at the hospital that reality hit.

"Mom, I think I am nervous now," he recalls saying as he lay in a hospital bed that engulfed his small body.

"There is no need to be nervous," she responded, touching his arm and concealing her own fears. "This is a good thing."

A team of 40, including nurses and other staff from plastic and reconstructive surgery, orthopaedic surgery, anesthesiology, and radiology, took part in the 10-hour operation. They came from Penn Medicine, the Children's Hospital of Philadelphia and Shriners Hospitals for Children.

The surgeons meticulously took the hands and forearms from the donor and attached them to Zion's limbs, connecting bone, blood vessels, nerves, muscles, tendons and skin.

Four teams of surgeons worked simultaneously — two focused on the donor limbs, and two focused on Zion. The forearm bones were first connected with steel plates and screws. Microvascular surgical techniques were then used to connect the arteries and veins.

Once blood started flowing, surgeons repaired and rejoined each muscle and tendon one by one. They then reattached nerves before closing the cuts. They had to go back in when one of Zion's hands turned white, a sign of circulatory problems. The cause was a blocked artery they had to fix.

"When I first saw the hands, I got teary-eyed," Ray said.

Zion's arms were propped up in front of him the first couple of days with his new hands out of sight. He finally asked his mom to snap a photo of his hands.

"It was exciting," he said.

Gerald Brandacher, scientific director of the Composite Tissue Allotransplantation (Reconstructive Transplant) Program at Johns Hopkins Medicine, said Zion's prospects are promising because children are better able to regenerate nerves than adults.

Zion's new hands will also grow with his body.

"This is just another testimony that the field is expanding; that we are expanding to younger patients," said Brandacher, whose team has performed the most upper transplant extremities in the country.

Several weeks of recovery in Philadelphia and months of therapy still remain for Zion.

Occupational therapists visit him three to five times a day. Splints help keep his hands in one position for most of the day so he can heal properly. For now, he can only move his hands when a therapist is present. They do passive exercises, moving the hands for him, and active exercises in which Zion tries to wiggle and bend his fingers and the therapists help complete the task.

"There is a lot of healing that has to happen," said occupational therapist Kelly Ferry. "We have to protect the range of motion."

Zion has progressed well, picking up light objects, Levin said. Almost immediately, he instinctively scratched his nose.

"Show them your thinking pose," his mom said this week as he worked with the therapists.

With his fingers, he rubbed his chin and looked into the air contemplatively.

Zion has lived without hands for so long that his family isn't used to seeing them. His 2-year-old sister had loved rubbing the ends of his limbs against her face and seemed confused at his new hands at first — as if they didn't belong. Now, when she calls to talk to Zion by video phone, she always asks about them.

"I want to see Zion's hands," she squeals.

Zion looks forward to the day therapy is over and he can return home. And throw that football.

His mother is not quite ready for the football; she thinks it's a dangerous sport.

"You're so over-protective," Zion said.

"I am supposed to be," Ray said. "That's my job."

amcdaniels@baltsun.com

Twitter.com/ankwalker

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