Harry Jackson was born with a rare bowel condition and needed a life-saving liver and bowel transplant
A Cambridge father who donated part of his liver and bowel to his son in an “extremely rare” transplant has described the experience as the “greatest privilege” of his life.
Harry Jackson, six, underwent the major operation at King’s College Hospital in London and is thought to be among only around 10 children worldwide to have received such a transplant. Harry was born with malrotation, a bowel abnormality that develops while the baby is still in the womb.
Volvulus is a complication of malrotation and occurs when the bowel twists, cutting off the blood supply to that section of the bowel. The condition can prove fatal. Harry has also been diagnosed with intestinal failure-associated liver disease (IFALD), a progressive liver condition brought on by years of intravenous feeding required to manage his illness.
With limited options available, Harry’s parents Annie and Gary met with the transplant team at King’s College Hospital to explore the possibility of a combined liver and bowel transplant and to establish whether either parent was a suitable match. The couple, from Cambridge, were desperate for a solution and immediately agreed to undergo testing to determine their compatibility with Harry.
Ms Cerveno said: “When Harry was diagnosed with malrotation, we always knew that a bowel transplant would likely be part of his journey one day. We just hoped that day would be many years away. When his liver began to fail because of the total parenteral nutrition keeping him alive, everything changed.
“Suddenly we were faced with the reality that he needed both a liver and bowel transplant much sooner than we had ever imagined. There are hundreds of children like Harry waiting for the phone call that could save their lives. As parents, you feel completely helpless watching your child wait for something so uncertain.
“The thought that one of us might be able to donate and give Harry that chance was something we wanted to explore immediately. If there was any possibility we could help him ourselves, we had to try.”
After weeks of medical assessments, Mr Jackson was confirmed as a 98 per cent human leukocyte antigen (HLA) match with Harry, indicating their immune systems were remarkably compatible. In January last year, Mr Jackson underwent surgery at King’s College Hospital to donate portions of his liver and small intestine to his son.
He said: “When you’re a parent, you’d give your child anything in a heartbeat. So when I was told I could donate part of my liver and bowel to Harry, there was never a decision to make. I was just incredibly grateful that I had the opportunity to do something that could help save his life and give our little boy a second chance.
“The journey to surgery wasn’t easy. I had to lose six stone, follow a strict diet, completely give up alcohol and stay focused for months to make sure I was healthy enough to donate. It was physically and mentally demanding but every challenge felt worthwhile because it meant I was one step closer to helping Harry.
“The operation itself lasted 17 hours and my recovery took around six weeks. It was tough, but nothing compares to seeing Harry looking healthier and stronger afterwards. Watching him recover and knowing that I had been able to play such a significant part in giving him that chance is something I’ll never be able to put fully into words.
“It remains the greatest privilege of my life, and I would do it all again without a second thought.”
At present, approximately three in every 100 liver transplants carried out in the UK involve living donors, with the vast majority of these performed on children.
Professor Nigel Heaton, consultant transplant surgeon at King’s, who formed part of the surgical team treating Harry, said: “From the first meeting, it was very clear that Gary was set on doing all he could to help Harry recover. He took the idea of living donation very seriously and reduced his weight through healthy eating and exercise.
“The surgery was performed through a vertical scar in the upper abdomen and removed about 20 per cent of Gary’s liver and one and a half metres (4-5ft) of the small bowel (normal length 20ft). Gary was always positive and uncomplaining, and recovered very quickly.”
King’s hosts the Institute of Liver Studies and has long been a leading force in liver transplant research and development. Ms Miriam Cortes-Cerisuelo, liver transplant consultant surgeon and clinical lead for transplant surgery at King’s, said: “There are a number of benefits to living organ donation.
“The donated organ is in excellent quality from a healthy donor, and the process allows better preparation and planning for the surgery. As a result, there are much better chances of success for the transplant. However, living donor transplants involving the small bowel and liver, such as the one that saved Harry’s life, are extremely rare.
“There are around just 10 cases worldwide that we know of, all involving children. In addition to carrying out Harry and Gary’s donor transplant surgery, the liver unit at King’s has conducted one other living donor combined liver and bowel transplant, the only two cases of this kind to take place in the UK.”
The King’s liver unit, which celebrates its 60th anniversary this year, has completed more than 300 living donor liver transplants since its establishment. Only three NHS centres across the UK provide this service (King’s, Leeds and Birmingham).
Ms Cortes-Cerisuelo said: “Our work would not be possible without the generosity of people who sign up to the NHS to become an organ donor and give the gift of life, and their families who supported their decision.”
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