Baby with hip condition cries in pain when she crawls after 'surgery delays'
The parents of a baby girl born with a hip condition fear she will spend her entire childhood in a wheelchair after they said vital surgery was repeatedly delayed.
Lilly Barry needs a major operation on her hip before she reaches 18 months, but with little over three months left, parents Kayah and Andrew have no idea if or when it will happen.
The couple said they were originally given an operation date in December 2022, only for the to be pushed back on multiple occasions.
With the clock ticking, the worried parents are now desperately trying to get answers from bosses at Royal Blackburn Hospital while also trying to see if another hospital can perform the operation.
According to Kayah, Lilly is left crying if she even tries to crawl due to the agony it causes her, reports Lancs Live.
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Lilly 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.
While it can sometimes be treated by the baby wearing a fabric splint called a Pavlik harness, this did not work for Lilly.
Parents Kayah and Andrew with their daughter Lilly (MEN Media)The family, from Rishton, have been left frustrated and upset by a process that they say has been hit by lengthy delays and little communication. They have submitted two complaints and receiving 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.
"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 told LancsLive.
Whereas Kayah's issue as a baby was fixed by wearing the harness, that did not work for little Lilly and surgery was the only option. An operation was first arranged for December, only to be moved to January without explanation. The consultant dealing with Lilly left the hospital around that time, further delaying the process.
When his replacement assessed Lilly, he decided she needed a much larger procedure and this was due to take place in May. However, the family say they were then told there had been a mix up and it was actually a different patient who had been booked in and that they were mistakenly informed.
The family have 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.
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"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.”
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