A baby with spina bifida underwent groundbreaking surgery while still in the womb in the hope it might give him a chance of walking when he’s older.
Joanne Crellin, 37, went under the knife when she was 26 weeks pregnant to try to correct her unborn child's condition.
The mum-of-four had been shocked to be told her unborn son, Blay, was suffering from the condition at her 20 week scan, particularly as an earlier scan hadn’t revealed any issues.
According to the NHS Spina bifida is when a baby’s spine and spinal cord don’t develop properly in the womb, causing a gap.
This leaves vital nerves exposed as the pregnancy progresses and can cause irreparable damage, potentially lead to walking difficulties after birth.
Having learned about her unborn child’s condition, Joanne was also told that Blay also had hydrycepahlus (fluid on the brain), a symptom of spina bifida.
Doctors told Joanne it was possible for her to undergo surgery during her pregnancy but it would need to be carried out quickly, and as there were no surgeons available in the UK, she had to rush to Belgium.
Initially Joanne, who has three other children, aged two, 11 and 19, was unsure about having the operation, but she changed her mind after researching the debilitating condition.
“At first I wasn't sure about having it but I went home and researched what the outcome was,” she says.
“Because in spine bifida the nerve endings are on the spine, it's the amniotic fluid around the baby that actually causes the damage.
“As the pregnancy progresses the baby is getting bigger and pressing the nerve endings against you - which are getting squashed.
“All the damage is done in the womb but the foetal surgery covers the exposed nerve endings so you can't have further damage.”
The operation to close the gap would avoid Blay needing to have a device fitted – known as a shunt – to drain the fluid from his brain.
Additional surgery is often needed to change the shunt as the child grows up or if it becomes clogged or infected.
Ms Crellin said having a shunt fitted after Blay was born would have meant travelling long distances to the hospital if it became blocked.
Joanne, a personal trainer, underwent the groundbreaking procedure in October 2019 with surgeons able to close the gap in Blay's spine by cutting into the womb, reducing any further nerve damage or fluid leaking to his brain.
Blay was born two months later via caesarean section on December 6 2019 at the Liverpool Women's Hospital where he remained in intensive care for four days.
He was then moved to Alder Hey Hospital where staff pulled out all the stops to get him home in time for Christmas.
Though the full effects of the surgery won’t be known until Blay grows, Joanne, from Douglas on the Isle of Man, is happy that she's given her son a fighting chance of walking.
“When I touch his feet they don't move at all - they don't clench,” she says. “It's quite obvious he doesn't have any feeling.
“He won't have full sensation - it would be deluded to think so. But he might have another operation which can bring back a bit.”
It's now a matter of waiting to see how successful the surgery was as Blay continues to grow - but there's every reason to be hopeful.
“He no longer has hydrocephalus and his cerebellum was pulled down but now it's coming back into its proper position,” she explains.
“You can't tell if he will need a shunt but I'm feeling positive that he won't and he does have feeling in his legs apart from his feet.
“It's known as a 'snowflake disability'. You can have a baby that has the area on their spine affected in exactly the same place but the outcome won't be the same.
“You don't know which nerve endings have been damaged.”
Joanne and her partner Shaun, 44, have chosen to speak out about the surgery in a bid to encourage mums and dads-to-be to take their 20 week scan more seriously.
“It's seen as a bit of a gender reveal,” she says.
“Shaun and I were laughing on the way into the hospital - that's what gets me.
“They gave me a leaflet after I was told [about the spina bifida] and I couldn't even look at it - I felt physically sick.
“It's still something that really upsets me.”