A Manchester mother has shared the story of her brother’s life-saving gift of a kidney to his two-year-old niece, in order to raise awareness of the importance of altruistic organ donation.
Samantha Ayling, from Bury, is recovering at home now after her uncle Andy Silverman’s incredible gift, which means she has a chance of a normal life – after two years on dialysis and being tube-fed.
Mum Stacey Silverman gave birth to Samantha and her twin Alexandra, after a very rare ‘mono mono’ pregnancy which saw the girls sharing the same amniotic sac and placenta with no division between the babies.
“We thought the girls were fine at first after the birth, although premature, but then we found out Sammy’s kidneys had not formed properly,” explained Ms Silverman who has also has an older daughter, Georgina, four, with partner Jim.
Sammy was immediately transferred to St Mary’s Hospital in Manchester for treatment and dialysis, where she stayed for eight months, with the family supported by Camp Simcha, who provided a family liaison officer (FLO) and volunteer to help with Alexandra, household support and night-time respite among other practical services.
“The support from our Camp Simcha FLO Daniella, as well as our lovely volunteer made such a huge difference in those unbelievably difficult months. Just having them come to the hospital and look after Alexandra so I could have a break and also be trained on the dialysis to prepare to bring Sammy home was life-saving. Once we got home, our volunteer would come and give me respite before the pandemic – and then lots of arts and crafts helped keep Georgina happy and busy even when they couldn’t visit.”
Sammy was given only a fifty per cent chance of surviving her first 12 months – and the family were told ultimately, the only way of her leading a full life was a transplant.
However, she had to reach a certain size and weight to be eligible for this. A few months back her doctors said she was ready – it was then that Sammy’s uncle, Andy Silverman, from Radcliffe, offered to be her donor.
Andy’s son Alfie has hydrocephalus and has had five brain surgeries to date. The dad-of-three, who runs his own plumbing and heating business, says what his family had been through with Alfie was the catalyst for him wanting to give his kidney to Sammy.
“If Sammy could be made as well as she could be and some of the stress on the family could be alleviated that for me was a big thing,” said Mr Silverman, who was also supported by Camp Simcha. “I just knew it was the right thing to do.”
Although Ms Silverman was also a match, there was concern that with her partner at home looking after the other girls, she would not be in a position to be the caregiver for Sammy after surgery.
“Before we made the decision, the hospital told us to take a week to talk through the practicalities – but when I called my brother halfway into the week, he said to me ‘I’ve put everything in place: childcare, work … I want to do this.”
Sammy is doing really well now but the surgery, in late June, was not without complications.
“They gave her a lot of fluid while she was having the transplant which is normal. But she got a ‘sleepy kidney’ which is rare with a living donor. This meant she couldn’t cope with all the fluid because the kidney didn’t wake up fast enough. She ended up having to be intubated; sedated; and temporarily paralysed in order for her lungs to repair themselves, which was terrifying,” said Ms Silverman.
“Then her heart started to go wrong, and they thought she had had a stroke. Two days later her lungs had cleared, the stroke turned out to be a false alarm and she was ordering the nurses about.
“So we have gone from almost losing her – at one point they said she was about an hour away from her body giving up – to her being absolutely fine. It has been a hellish couple of years: Sammy has been on daily dialysis, tube-fed and sick between two to 12 times a day as part of her renal condition, but now thanks to Andy she is finally getting a chance of a normal life.”
Mr Silverman added: “Our hope now, from telling our story is to encourage others to consider altruistic donations of organs.
“This is where you give an organ to someone you don’t know or outside of your immediate family. We never knew it existed but we have been told there is a massive shortage of altruistic donors within the UK in comparison to the United States.”
Sammy has faced a long recovery period since the op – the doctors compared the op to being hit by a truck – but her mum says she is doing brilliantly and getting stronger every day.
“While there are no guarantees on how long the kidney will last and we have a lot of monitoring ahead, we hope she could get 20 years before she needs another.
“For now, she is enjoying being able to taste food for the first time – after being tube-fed previously, and we are loving her joy in eating. She finishes one meal and asks for the next! It has been a very dark two years, but we really pray that with Andy’s amazing gift, her future is brighter.”