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Friday, November 20, 2015
After a game of shuffleboard, Jonathan Noon, 16, hopped off the cruise ship onto a beach in Bermuda. It was the farthest he’d ever been from home on a trip to celebrate many family events – his parents’ 25th wedding anniversary, his father’s 50th birthday and Jonathan’s two-year anniversary of a lifesaving surgery.
In 1999, Erin and Jeff Noon brought their son, Jonathan, in for a routine visit at MassGeneral Hospital for Children (MGHfC) when he was 4 weeks old. After a height and weight check, the resident caring for Jonathan noticed he looked a bit yellow and wasn’t gaining weight. Several tests later, Erin and Jeff learned that their son had biliary atresia, a life-threatening condition in infants in which the bile ducts in the liver don’t have normal openings. It causes bile to back up inside the liver and cause severe damage.
Doctors concluded Jonathan would need a liver transplant before he turned 1. Jonathan actually made it to age 12 before his health declined to the point that he needed a transplant, but not without one operation, performed by Daniel Doody, MD, pediatric general surgeon, and Allan Goldstein, MD, Surgeon-in-Chief of MGHfC, chief of Pediatric Surgery and director of the Pediatric Neurogastroenterology program, to help drain bile from his damaged liver. He was then added to two waiting lists for a new liver – one at MGHfC and one in Pittsburgh, Penn.
“When we were on the waiting lists, it was hard to sleep at night knowing that something horrible had to happen to someone else’s family member so Jonathan could get a new liver,” said his mother, Erin. “It’s the hardest thing to wait and feel like you have no control. There’s no book for when your child is sick and every family is unique. You can’t go by anyone else’s book.”
Even though he was second on the waiting lists, it was difficult to find a deceased donor because of Jonathan’s blood type. That’s when the Noons learned about the living donor transplant program at MGHfC.
In the living donor transplant program, living family members can donate partial or whole organs to family members in need of a new organ. This is especially important for children who need organs, said Uzma Shah, MBBS, clinical chief of Pediatric Gastroenterology and Nutrition and director of the Hepatobiliary and Pancreatic and Pediatric Liver Transplant programs at MGHfC.
“There is a shortage of deceased donors available for children. Additionally, children often need different sized organs than adults,” said Shah. “With living donors, you have an organ for the child that is also the right size. The donor and recipient can also receive care in the same hospital because we have pediatric and adult care under one roof.”
The Noons decided to have Jeff tested to see if his blood type was compatible with Jonathan’s. It was, and from there, Jeff decided to be his son’s living donor.
“You do what you’ve got to do in these situations,” said his father, Jeff. “I just knew that’s what he needed to have another shot at life.”
On June 25, 2013, Jonathan and Jeff went in for surgery. Heidi Yeh, MD, surgical director of the Pediatric Transplant Surgery program, and the pediatric surgical team removed Jonathan’s damaged liver and prepared him to receive the new liver. An adult surgical team, just down the hall, removed half of Jeff’s liver to be transplanted into Jonathan.
“I met Jonathan and his parents after he’d been put on the waiting lists, just before he started getting sick from his liver disease,” said Yeh. “Luckily, Jeff was healthy enough and had the right sized liver, so we were able to do a timely transplant for Jonathan before he declined too much, as many patients do while waiting for a deceased donor transplant. There’s not much more you can do for your child than Jeff did by giving up part of his liver.”
After the surgery, Erin traveled between Jeff’s room on an adult floor and Jonathan’s bed in the Pediatric Intensive Care Unit – something she wouldn’t have been able to do if her husband and son were at different hospitals.
“Even though Jonathan and Jeff had separate teams caring for them, we’re all part of the same program, and communication and logistics are that much easier because we’re all in one place,” said Yeh. “As Jonathan grows up, his transition to adult care will also be easier because he’ll see the same care team throughout his life. The continuity of care is fabulous.”
Two years after his surgery, Jonathan, now a sophomore at KIPP Academy Lynn Collegiate charter school, is back to doing his favorite things – seeing friends, doing well in school and playing video games. “Before my transplant, I had stomach pains and I was tired all the time. I couldn’t travel more than 3 hours from home,” said Jonathan. “Now, I feel good and I’m more awake and I just have fun.”
Jonathan isn’t the only one who noticed a change in his wellbeing since his transplant. “During my 11 years working with the Noons, I’ve witnessed the highs and lows, the roller coaster existence that usually accompanies families waiting for a transplant,” said Anne Marie King, RN, MSN, transplant coordinator in Pediatric Transplant Surgery at MGHfC. “Since his transplant, I’ve seen Jonathan grow into a confident, bright, active young man with energy and enthusiasm. It’s been wonderful to see that transformation.”
Jonathan comes back to MGHfC for check-ups, but his memories of the hospital are warm and positive. “I loved the PICU and the nurses in the PICU. They were all so nice and they know me so well. They made me feel special and they had a party for me because I was here on my 13th birthday,” he said. “I also love Dr. Yeh! She’s really nice and understanding. I asked her to take a picture of my liver during my surgery and she did. Those are really cool pictures.”
What the Noons are most thankful for, however, is Jonathan’s second chance at life. “We like to say that Jeff gave Jonathan life twice,” said Erin. “And we wouldn’t be able to say that without MGHfC.”
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