A disabled teenager has had her spinal surgery cancelled four times in two months due to a shortage of intensive care beds at a Newcastle hospital.
Nieve Flint’s family have spoken of their anguish as they say the window of opportunity for the surgery is shrinking, and that without it her life “will be shortened”.
The 14-year-old, from Ryton, Gateshead, has been on the waiting list for the procedure at the Royal Victoria Infirmary for just over a year.
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Nieve has a rare neurological condition Retts syndrome, meaning she is severely disabled.
Her other difficulties include epilepsy and scoliosis - a curvature of the spine - which is now so severe it is starting to crush her internal organs and cause problems with breathing and bowel function.
Her parents Kristine and Dan were told by consultants that it was “imperative” for the spinal surgery to go ahead this year, preferably during the summer months when Nieve’s respiratory health is generally better.
After almost a year on the waiting list, Nieve was scheduled to have the operation on August 10 this year.
But this was later cancelled, as were the rescheduled dates on September 8, September 28 and October 6.
Kristine said that due to Nieve’s complex needs, she will need to be transferred to paediatric intensive care after the surgery, and the family have been told there are currently no beds for her.
The 38-year-old mum-of-two said: “We’re at the end of our tether because my daughter’s health is deteriorating.
“She’s very medically fragile and we have a small window of opportunity to have surgery.
“The spine has started to crush her internal organs - we’re seeing difficulties with her breathing, with her bowel function.
“If she doesn’t have the surgery the situation will get worse and her life’s going to be even more limited.”
The family say the window of opportunity for the procedure is “shrinking as each week passes” as Nieve’s respiratory health deteriorates in winter, with the risk of chest infections increasing.
Mental health nurse Kristine said: “If her health continues to deteriorate at some point she won’t be able to have the surgery because she’ll be too medically fragile, they won’t want to take the risk.”
She added: “It’s been really disruptive for the family every time we’ve had a date, we’ve all had to shield.
“I have another daughter so I’ve had to have both kids off school, move my job to working from home. It’s been incredibly stressful.
“We just really worry her disability is affecting the decision.”
A spokesperson for the Newcastle Upon Tyne Hospitals NHS Foundation Trust said: "Spinal surgery for children is an extremely complex procedure and making sure we keep our patients safe throughout surgery and during recovery is our first priority.
"We are working closely with Nieve’s family to make sure that she is able to receive the surgery she needs as soon as possible.”
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