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. He conquered Ben Nevis aged 11 and Snowdon (Watkin Path – toughie!) when he was 12. Harry loves swimming, biking, school, Lego, cats and gaming. He and Simon have competed regularly at the British Transplant Games and won many medals between them.
Sadly, over the past year problems in Harry’s bile ducts and surrounding arterial system meant that he has since spent many months in and out of hospital. In August the decision was made to relist him for transplant. Living donation is not possible this time 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.
“The uncertainty of waiting for the call (which could come at any time), bags packed, whilst trying to keep Harry well and out of hospital makes for very difficult times,” says Clare. “He has very little energy and our family’s world has become very small. If it was possible, we definitely would have embraced living donation a second time. We would actively encourage other families who find themselves in this situation to consider live donation and discuss it with their transplant teams. And of course we would encourage everyone to share their wishes about organ donation.”
We send our very best wishes to Harry, Simon and Clare and thank them for sharing their story. If you have a living related organ donation story you would like to share please contact press@childliverdisease.org
