Two of my children need new kidneys
Mum’s transplant agony as she can only donate one
A DEVASTATED mum was told two of her kids need a new kidney... but she can help only one of them.
Doctors told Sarah Bingham that son Noah, 20, and daughter Ariel, 16, have the same rare illness.
Sarah IS a match and can give up one of her kidneys. But her husband is NOT.
That left the mum with the heartwrenching decision of which child would get one of her kidneys.
Sarah said: “It was really hard knowing that both children needed a kidney but I only had one to give.
“As a mum, you want to do all you can to spare your children any pain.”
Thankfully, two family friends were later also found to be matches for Noah.
And that should leave Sarah to give the gift of life to Ariel – if all goes according to plan.
“I can’t put into words how it feels to know that there are people willing to put themselves on the line for our children,” Sarah added.
Both kids have nephronophthisis, suffered by one in every 100,000 Brits. Noah is completely reliant on dialysis, while Ariel’s kidneys are functioning at just 17 per cent. Sarah, who works fulltime home-schooling her autistic children, is a match for both children.
But husband Darryl, 49, has a different blood type, which makes his kidney unsuitable. The couple, who also have son Casper, 12, and live in Hexham, Northumberland, have suffered four years of heartache.
Problems started in 2016 when Ariel seemed constantly tired – which was initially put down to exam stress.
PLATEAU
That July, she was taken to Newcastle’s Royal Victoria Infirmary with a crippling stomach ache. Tests found her kidneys were functioning at only 25 per cent and soon afterwards she was diagnosed with nephronophthisis.
“That word transplant was mentioned very early on but it was impossible to say when she would need one. Kidneys can decline, then plateau,” said Sarah.
The worried mum was told she would be able to donate a kidney, when the time came. At that stage, she had no idea that Noah would one day need a transplant too.
Then, in 2019, nine days before he was due to begin studying astrophysics at the University of Central Lancashire, he started being violently sick and vomiting blood.
He was rushed to hospital where tests showed his levels of creatinine – a waste product normally filtered out of the blood – were sky-high.
Within hours he was sedated and placed on emergency dialysis. “I felt so helpless,” said Sarah.
Now Noah has also had a diagnosis of nephronophthisis. As with his sister, the condition is caused by “deletion” of a gene known to scientists as NPHP1.
Doctors cannot say exactly when the pair will have transplants. To complicate matters, Noah also has gastroparesis, a condition in which the stomach does not empty properly. As a result he has suffered major weight loss.
Sarah added: “Ideally, Noah needs a transplant now because his kidney function is so poor – but he has to put weight on first so he’s strong enough. They find it really anxiety-inducing that they are both facing major surgery, especially as one has to go first.
“But they will get through this together.”
John Sayer, professor of renal medicine at Newcastle University, said: “Nephronophthisis is rare. There are about 20 genetic mutations we know of that can cause it and the chances of having the gene deletion that Noah and Ariel do is one in 500,000.” As the Binghams wait to see what the future holds, chartered surveyor Darryl is running 12,000 steps a day for 12 days to raise money for Kidney Research UK’s Step Into Christmas campaign.
Sarah added: “Support from friends, family, neighbours and church has been incredible. We want to raise money to pay forward the kindness we’ve received.”
As a mum you want to do all you can to spare your kids any pain SARAH BINGHAM ON HER CHILDREN’S HEALTH FIGHT