Family raise £20k to pay for baby's vital cleft palate operation amid NHS delays
Watch Tilly's story above
The parents of a baby born with a rare condition say they've had to raise £20,000 for an operation because NHS delays are so long.
Tilly Irish, from Taunton, was born with a cleft palate, and an underdeveloped chin and jaw due to a rare condition called Pierre Robin sequence.
The 10-month-old is one of only 50 babies born with the rare condition last year.
NHS doctors told Tilly's family she needs surgery by the age of 13 months to avoid longer-term speech delay. But they are unable to do the operation due to delays.
"We're going to have to go private because the NHS are behind in our area for this particular operation for cleft palate children," Tilly's dad, Lloyd, told ITV News West Country.
They have since had a consultation at Great Ormond Street Hospital in London and have managed to raise £20,000 for the private operation in just two weeks.
"We were looking at it and we just wanted the best for our daughter," Lloyd added.
Tilly's mum Orla said the NHS have been "phenomenal" in how it has treated Tilly since she was born.
"We absolutely love and adore our NHS, the care we've had from day one has been mind-blowing," she said.
"It's just trying to get these appointments and hit these targets of getting the operation done at the optimal time for Tilly is what's driven us to go private."
The Bristol Health Trust says the number of patients whose care is beyond the 13-month mark is low, but those delays are a concern to each family.
Chief Medical Officer, Professor Stuart Walker, said: "During the Covid pandemic two things really had a significant influence on that service, the first one was the general reduction in the delivery of elective services, which of course affected all elective services across the board. It didn't affect cleft disproportionately but it did affect it.
"Secondly, cleft specifically suffered with a high proportion of staff sickness, more so than other services."
Tilly's mum said her speech development is one of their biggest concerns.
She said: "We as her parents are going to be the massive drivers in her speech, we've already attended our first Babble clinic which is all about teaching us good habits for her to develop as early as possible, the certain sounds a cleft baby can't make because of the acoustics in their mouth.
"It's given us the confidence and the boost to know we'll get this done for her at the right time and all our work and trying to help her with her speech is going to keep going. It will mean our baby will hopefully thrive more so than she is already."