A man who donated part of his liver and bowel to his son in an “extremely rare” transplant has described it as the “greatest privilege” of his life.
Six-year-old Harry Jackson received the transplant at King’s College Hospital in London and is believed to be one of only around 10 children worldwide to undergo the procedure.
Harry was born with malrotation, an abnormality of the bowel that occurs when the baby is developing in the womb.
Volvulus is a complication of malrotation and occurs when the bowel twists so the blood supply to that part of the bowel is cut off. This can be life-threatening.
Harry has also developed intestinal failure-associated liver disease (IFALD), a progressive liver condition caused by years of receiving an intravenous form of feeding to manage his condition.
Faced with few choices, Harry’s parents Annie and Gary met with the transplant team at King’s College Hospital to discuss the possibility of a liver and bowel transplant and if they were a match.
The couple, from Cambridge, felt desperate for help and were immediately wiling to undergo tests to see if they were a match for 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.”
Following weeks of assessments, Mr Jackson was confirmed to be a 98% human leukocyte antigen (HLA) match with Harry, meaning their immune systems were incredibly similar.
In January last year, Mr Jackson underwent surgery at King’s College Hospital to donate part 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.”
Currently, around three in 100 liver transplants performed in the UK are from living donors and the majority of these are for children.
Professor Nigel Heaton, consultant transplant surgeon at King’s, who was part of the team that operated on 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% 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 runs the Institute of Liver Studies and has been at the forefront of research and development of liver transplants.
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.”
This year marks 60 years since the King’s liver unit was set up and it has performed over 300 living donor liver transplants.
Just three NHS centres in the UK to 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.”
