A little boy who was given his mum’s kidney in a life-saving operation at a Nottingham hospital will celebrate his 5th birthday on World Kidney Day.
William switched on the Christmas lights at Queen’s Medical Centre in December 2021 before heading home to his own Christmas tree and his letter to Santa.
Fast-forward 15 months and the transplant has transformed William’s life. He started school in September and his parents Alice and Nigel say life has never been better.
“The change in William is amazing,” said Alice. “He has so much energy compared to before. He started school in September and loves it! He loves learning and socialising with his classmates, and he can join in with PE lessons.”
William was born with a kidney defect; he had his kidneys removed in September 2020 and was placed on dialysis. After a period to allow his body to recover, Alice’s kidney was removed at City Hospital in the morning and transplanted into William at Queen’s the same day.
Nottingham Children’s Hospital is one of 24 transplant centres in the UK, and is the hub of the EMEESY Children’s Kidney Network, caring for children and young people in around 20 centres across the East Midlands, East of England and South Yorkshire.
“To go from William being hooked up to a machine every night for 18 months – keeping him alive – to having the transplant and him being able to live without many restrictions is a dream come true.
“While he was having his dialysis treatment we would talk about all the wonderful things we could do once he was off it, but we couldn’t get excited because you never know what the future holds. Thankfully I was able to give him a kidney and now he has the world at his feet. He’ll be on medication for life, and supplements – but he won’t be on dialysis any more.
“For us as parents to see our child go through the number of operations, procedures and blood-taking appointments that he has had is heart-breaking.
“Seeing him crying for us to help him while we are holding him still so they can take bloods is not what anyone should have to go through. Hopefully, when he is older all this will be a very distant memory.
“William is a completely different child since the transplant; he has more energy, his personality is amazing – before he was too tired or unwell to show who he really was – he is thriving and not just surviving.”
“As a family, it’s given us back our freedom. When William was on dialysis, we were constantly checking the time if we were out as we’d have to be home by 4 pm so we could set up William’s machine – he had to be on it for 11 hours every night.”
Before his transplant, William wasn’t allowed baths, sand, mud, or anything that involves any nitty gritty, because he had a line in his tummy for his dialysis.
“We started going swimming with his cousins and he’s starting to get the hang of it – he loves splashing everyone!
“We’ve also been able to enjoy a few holidays. That would have been too difficult before; we’d have had to take all the equipment and then we worried that it might not work when we got there, so we just never did it.”
William has a hospital check-up every two months, where he likes to show Alice and Nigel his marble run – for children who are going home after their transplant.
“He shows us his red marble every time we go to the ward – each one has a child’s name and transplant date on. It is such a wonderful thing for the children to be able to do as a celebration of their successful transplant.
“He always also asks who is in ‘his’ room when we visit! He was able to have the same side room when he had his kidneys out and then again when he had the transplant, so he has claimed it as his!”
Mr Alun Williams is the consultant paediatric surgeon who carried out William’s transplant at NUH.
He said: “William and his family are tremendous examples of the transformation that transplantation brings about, and it’s a delight to see the whole family thriving. Life with kidney disease is tough for the whole family and to be able to help makes such a difference.
“Living donation is especially important, and innovations like the national kidney sharing scheme are making the most of opportunities for transplants – not everyone can donate directly to their intended recipient and this is a way to allow donors to donate and see ‘their’ recipients have their transplants. We are seeing more and more altruistic non-directed living donors too, which is excellent.”
Alice is now involved in supporting other parents whose child is waiting for or having, an organ donation, to give them an idea of what to expect for their child and themselves, and how they might feel.
“It’s amazing that people are able to have a transplant and have a normal life without relying on machines,” she said.
“I’m so grateful that there are people with the knowledge that have dedicated their lives to helping people who wouldn’t survive without them.”