"We were very much of the attitude that we would do anything we could. In such a situation, you just don’t think about yourself  "

Simon and Clare had considered living related donation when their son, Harry, was first assessed for transplant in 2012. But when a suitable donor liver became available quickly, they didn’t take it further. Four years later however, when it became clear that a second transplant was necessary, the issue arose again.

“We decided that Simon would go forward rather than me,” says Clare. This was because Harry’s little brother, Sam, was only two at the time and we didn’t think he’d cope with visiting me on ICU. Plus, Simon thought Harry would want his mummy with him. So, it was an easy decision really and we were very much of the attitude that we would do anything we could. In such a situation, you just don’t think about yourself.  

 From Simon’s point of view, he was happy to be able to do something practical to help make Harry better.  
 “I don’t remember feeling worried about myself,” he says. “I was more concerned that they might find something wrong with me which meant I couldn’t go through with it or was ill myself and didn’t know.

 “It’s a long process and there’s no guarantee that you’ll be suitable, and this is explained to you right from the start. I suppose I dealt with it by going to the first test and seeing what happened from there. If I got through that I just moved onto the next stage.

 “The clinical team were amazingly supportive and there’s no pressure on you at any point to do it. In fact, I clearly remember being told that at any point I could pull out and there would be no stigma attached. One doctor even told me that they could say it was a clinical issue to cover any embarrassment or guilt. This was the case right up to the day of the operation and I remember being asked calmly and quietly on the day if I was still ok and wanted to proceed by at least three separate people.

 “Happily, both surgeries went to plan (me at Queen Elizabeth in Birmingham and Harry at Birmingham Children’s Hospital) and recovery wasn’t too bad. I’m normally fairly active but had increased my fitness prior to the op by doing more running and exercise. I also stopped all alcohol as advised. So, I was probably at a good standard of fitness going in which I think helped with recovery. I was in hospital for a week and Day Three was the worst as that was the day that they switched me from epidural pain relief to oral. There was a bit of a lag between the two so that was a tough afternoon! The upside was that I was off all IVs so I got a taxi over to the Children’s Hospital to see Harry on Day Four, though I probably wasn’t supposed to.  I’ve no doubt that seeing his progress boosted my own recovery! 
 

“My remaining liver lobe was 60% back after a week and fully regrown in three weeks. The wound took a while longer but wasn’t too bad and there’s no lasting effects at all, just a cool scar. In fact, I did a half marathon 12 weeks after the op! “

Harry’s surgery was also a success and from 2016 until November 2023, he had amazing health. Unfortunately he then spent many months in and out of hospital due to problems in his bile ducts and surrounding arterial system and in August 2024, the decision was made to relist him for transplant. Living donation was not possible this time around because of the issues surrounding his liver. This came as a double blow to Harry’s family as they had found this process so straight forward and really appreciated being so actively involved in Harry’s care, as well as having a date to work towards.  

“In December 2024, Harry received his third transplant at Birmingham Children’s Hospital,” says Clare. “He was in theatre for 15 hours and his new liver was cared for by the HOPE perfusion machine. We were in hospital for five weeks spending Christmas Day on Ward 8 when both Harry and his brother Sam were very spoilt!

“Since then, Harry has gone from strength to strength. He returned to school in March 2025 and even attended an outdoor education weekend that June! The following month he won a silver in 50m backstroke at the British Transplant Games in Oxford – a really emotional moment as the entire crowd cheered him on!

“He’s slotted right back into school, who have been amazing, and the difference in his health is astonishing. We can never thank his donor’s family enough and would urge everyone to share their wishes on organ donation – it’s so important.”

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