Kindness of a stranger gives boy life-saving gift

Thanks to a rare gift from a complete stranger, 12-year-old Tom Higgs will no longer need to spend Christmas hooked up to a dialysis machine. 

Tom, who developed kidney failure from a rare condition, was the first patient at Great Ormond Street Hospital (GOSH) to receive an altruistic kidney donation from Roger Sutton, a 53-year-old GP from Portsmouth.  Most kidneys are donated from family members, but in Tom’s case a kidney transplant from a family member was not possible.  He was on the waiting list for a deceased donor but a non-directed living donor ‘altruistic’ transplant was his best option.

Donors and recipients normally remain anonymous, but after exchanging letters through their transplants coordinators, Roger and Tom’s family arranged to meet for the first time this year. Both parties have chosen to waive the anonymity that normally surrounds a transplant, to highlight the benefit of giving an organ and saving a life.

Tom’s transplant at Great Ormond Street Hospital in 2011 followed a five-year period during which he became extremely ill. Diagnosed at the age of five years with Atypical Haemolytic Uraemic Syndrome (HUS), a rare disease causing kidney failure and high blood pressure, Tom spent much of his childhood in and out of hospital.  After a period in intensive care, Tom was started on peritoneal dialysis. His parents were trained to use the dialysis machine at home and for the next five years, Tom was hooked up to the machine every night. He returned to hospital regularly for tests and to have his dialysis catheter replaced.

Tom’s mum Vicky says: “Those years on dialysis were very stressful and restrictive on our lives. We knew that he was really poorly and would eventually need a transplant. I had to set up the dialysis machine and get Tom on it by 7pm each evening so he would be off it in time to get ready for school the next morning.  I needed to change his dressings before attaching him to the machine and also had to give him weekly injections.  It was heart-breaking knowing how much Tom disliked all of this, but we had no choice as his kidneys weren’t working and we had to filter his blood.”

Tom was put on the transplant waiting list when he was eight years old, and two years later received the transplant.  Vicky continues: “When we heard about the match, we were told that the organ was from a living donor who had decided to donate a kidney to a stranger. We were really surprised that someone would be so selfless.

Vicky adds: “Our lives have changed so much, it’s hard to believe. Before the transplant, we had to wait for Tom to come off the machine so we could get together and open our presents around the Christmas tree. On his birthdays, we usually brought his presents up to his room. Christmas is so different now – and Tom is definitely looking forward to the celebrations this year!”

The donor, Roger Sutton, underwent the operation at Queen Alexandra Hospital, Portsmouth, during a planned sabbatical from his GP work.

Roger explains: “I can’t pin-point the exact moment when the idea to donate a kidney first came to me.  I suppose what started out as a thought grew into a quiet conviction that it was the right thing to do - a chance to say thank you for all the great things that had happened in my life.

“Looking back, I can see there’s been a bit of a ‘renal thread’ running through my life.  My grandmother lived for 35 years after having one of her kidneys removed.  I watched a kidney transplant operation when I was a medical student.  Twenty years ago, a friend of mine had a transplant after developing renal failure.  My wife Debbie, who is a dietician, was for many years part of a renal dietetics team. As a GP, I have seen just how important organ donation is and how many lives have been saved through transplants.”

Roger underwent a rigorous assessment before the operation to ensure that he was healthy and mentally strong enough, and that his remaining kidney would function well.  Complete anonymity around the transplant process meant that he had no idea who would benefit from the organ.

Roger spent his sabbatical recovering from his operation.  Thank you cards sent to him soon after the transplant from Tom’s family, arranged through the coordinators, made him realise the transformation he had been able to make to a young boy’s life.

Dr Stephen Marks, a consultant kidney specialist who leads the kidney transplant programme at Great Ormond Street Hospital, says: “We are delighted with Tom’s progress since his transplant.  Each year up to 36 of our patients undergo kidney transplants, but Tom was the first one in our hospital to receive a kidney from a healthy member of the public who was also a complete stranger.

“The numbers of children, young people and adults on the transplant waiting list far outweigh the number of organs that are available for transplant.  It can sometimes be difficult to find a suitable donor among living relatives and there simply are not enough people on the organ donor register willing to donate after their deaths.  Altruistic non-directed kidney donation from individuals who are prepared to selflessly undergo a major operation opens up another vital source of organs. They are also now used to start a chain of transplants as part of the exchange scheme through the NHS Blood and Transplant, called the National Living Donor Sharing Scheme.”

Roger’s consultant surgeon, Sam Dutta said: “The number of altruistic kidney donations has been on the increase here in Portsmouth over the last few years. Since the start of this type of donation in 2007, we have seen 31 altruistic donations. This is one of the most selfless acts a person can do and we know that a healthy person can live a perfectly normal life with one good kidney. In 2012, Portsmouth contributed the largest number of altruistic kidneys in the country. We are very grateful for the generosity of people of Hampshire.”