The mum and dad of a baby girl are scared she will spend her entire childhood in a wheelchair after the vital surgery she needs has been delayed multiple times. Kayah and Andrew's daughter Lilly Barry needs a major operation on her hip before she reaches 18 months - but there is little over three months left before she reaches this age.
The parents were originally given a surgery date in December 2022 but it was pushed back several times for various reasons. The couple are now desperate to get answers from the hospital on when the operation will take go ahead.
Mum Kayah says Lilly is left crying in pain if she even tries to crawl due to the pain it causes her. She was born with developmental dysplasia of the hip (DDH), a condition where the "ball and socket" joint of the hip does not properly form in babies and young children.
It can sometimes be treated by the baby wearing a fabric splint called a Pavlik harness, however, this did not work for Lilly. The family has submitted two complaints about the Royal Blackburn Hospital, which is handing their daughter's case.
They also have the support of their local MP Sara Britcliffe, who they said has contacted the hospital trust, but still have no indication of what will come next.
Speaking to Lancs Live, Kayah said: "When she was was born, they already sort of knew she was going to have this problem because it goes through genetics and I had it as a baby. We waited until she was about three months and that's when she ended up at Blackburn Hospital. They did an X-ray and said she's definitely got it."
Kayah's issue as a baby was fixed by wearing the harness, which hasn't worked for her daughter and now surgery is the only option. The op was arranged for December, then it was rescheduled to January without explanation.
The consultant dealing with Lilly left the hospital around that time, which further delayed the process. Then when a new doctor took over Lilly's case he said she needed a much bigger procedure, due to take place in May.
But then the family faced yet another setback when they were told there had been a mix up, and it was actually a different patient who had been booked in and they were mistakenly informed. The family has been told that new operations cannot currently be booked due to construction work at the hospital and that Lilly is not near the top of the waiting list in any case.
According to Kayah, if the operation doesn't take place before Lilly is 18 months old, it will have to wait until she is an adult and she will remain unable to walk until then. "I just don't understand it," Kayah said. "
She won't be able to walk because she can't bare weight on her leg at all. She'll be in a wheelchair. And then it's the pain as well. Right now she can't even crawl without screaming in pain. It's been ongoing for year and all they've done it let us down time after time after time."
Dr Jawad Husain, Executive Medical Director for East Lancashire Hospitals NHS Trust, which runs Royal Blackburn, said: “We appreciate that waiting for surgery is a worrying time, especially when it involves someone so young. While we can’t comment on individual cases, we would reassure Lilly Mae’s family that treatment, including options for surgery, for hip dysplasia is available at any point in a person’s life.
“We will continue to work with Lilly Mae’s family to help her receive the care she needs, when she needs it.”
