Mum donated kidney to son diagnosed with rare condition
This is the heartwarming moment mum Sarah Melhuish and son Anthony were reunited after she donated her kidney to him in a life-saving operation.
Sarah, aged 49, stepped in to save the teenager despite having Multiple Sclerosis (MS) after he was diagnosed with a rare genetic condition called Nephronophthisis NPHP 1 .
The condition, which affects an estimated one in 60,000, resulted in end stage kidney failure for Anthony, which meant he was in desperate need of a transplant.
Sarah, from Maypole, Birmingham, said: “By giving him one of my kidneys, it’s almost like I’ve been able to give life to him twice. I would do it all again in a heartbeat and I wouldn’t change a thing.”
She recalled when he first became seriously unwell: “He wasn’t growing much, was tired all the time, had such a little appetite and was sick constantly.
“He’d been like that for a while before things got worse, but a lot of his symptoms were put down to either anxiety or his autism. So when we found out he had Nephronophthisis, it suddenly made a lot of sense.”
Anthony, aged 16, was admitted into hospital and given dialysis treatment immediately. He was put on the transplant list for a new kidney.
Sarah, a Domestic Abuse Service Manager, added: “As soon as he started receiving the dialysis we could see a change in him, and he was responding to it really well .
“A lot of our family were tested to see if they would be a match for him. It was an emotional rollercoaster. Anthony's dad had sadly passed away, and I have MS and so at first, I was told I wouldn’t be able to donate.
“But I looked at the criteria and I knew that despite my MS I was well enough. I really wanted to see if I could donate.”
In November last year, medics started the testing process on Sarah to determine if she could donate and three months later there was good news that she was well enough to undergo the operation.
Sarah recalled: “There was no question about it, of course I would donate my kidney to him. Finding out I could donate felt better than winning the lottery.”
Over the next three months, the mother and son prepared for surgery and Anthony continued to receive dialysis at home.
She said: “It felt very surreal for both of us. A lot of people told me how brave I was, but for me, it was the most natural decision I could have made.”
Finally the morning of the transplant arrived and nerves finally kicked in for Sarah.
“We had to go to separate hospitals and I did get nervous, but the support and reassurance I received was so calming,” she said.
During their separation both had a hand-knitted kidney to keep with them as a reminder of the importance of what they were both doing.
Sarah was admitted to the Queen Elizabeth Hospital in Birmingham and her kidney was transported across the city to Anthony who was being operated on at our Children’s Hospital.
Five hours later, he came out of theatre with his mum’s kidney.
Sarah said: “It was so difficult not being with him. We video-called that night as I was desperate to see him. But it wasn’t until three days later.
“When I arrived at the hospital, they were waiting with a wheelchair to take me to my son where we were reunited. The support we received from the renal ward was amazing and we started our recovery journey together.
“We knew the first six months were the most vital and it was daunting at first.
“I was able to make a quick recovery thanks to all the preparations beforehand, but it was nothing compared to Anthony.
“He was just suddenly so full of life in a way I'd never seen before.”
Anthony continues to make fantastic progress with his new kidney.
“He’s gone from being tired all the time and having such a small appetite to eating much more than he ever did and growing so much, I even saw him run for the first time,” explained Sarah.
“He’s so full of energy, it’s like he’s been given a new lease of life. He’s going to college in September to study animal welfare, and he’s in a position now to be making decisions about his life that he wouldn’t have been able to do previously.”
Sarah is now an advocate for the benefits of organ donation and is encouraging others to have conversations with friends and family about donating.
She said: “Organ donation offers a lifeline to someone.
“It’s such a supportive process and you must trust the journey.”
Dr Ramnath Iyer, Consultant Paediatric Nephrologist, said: "A live donor kidney transplantation is the best treatment option for children with end stage kidney disease.
“ Organ donation gives these children a new lease of life and a life with minimal restrictions on the things they love to do.
"It is a very gratifying experience for the parents and health professionals to see the transformation of the lives of children on dialysis."