A miracle baby with spina bifida underwent groundbreaking surgery while still in the womb – which is hoped might give him the chance to walk now he’s born.
Joanne Crellin, 37, went under the knife at 26 weeks to try and fix her unborn child’s condition after being told it was now or never.
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 which can cause irreparable damage – leading to walking difficulties after birth.
Mum-of-four Joanne was shocked to be told about the issue when she had her 20-week scan as she claimed she had been informed everything was fine two months earlier.
She was then told the surgery needed to be carried out quickly to protect the baby but there were no surgeons available in the UK – so she had to rush off to Belgium.
Joanne was also informed that her baby had hydrycepahlus (fluid on the brain) – which helped her make the decision.
She was asked to stay near the hospital in Liverpool, Merseyside following the successful operation on October 7 – meaning she was away from her family for three months.
She then gave birth to little Blay on December 6 via caesarean section.
The effect of the surgery is currently unclear and could be for some time, only becoming evident as the baby grows.
But Joanne, from Douglas on the Isle of Man, is just happy that she’s given her boy a fighting chance.
She said: “When I touch his feet they don’t move at all – they don’t clench. 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.
“The biggest reason was I wanted to prevent him having a shunt (a small device which can relieve pressure from spinal fluid) because of where I am.
“If he did, every time it became blocked I would have to travel to hospital in Liverpool.
“And, after the shunt has happened, if you put them down to sleep it can be fatal – I wanted to protect him from that.
“At first I wasn’t sure about having it but I went home and researched what the outcome was.
“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 fetal surgery covers the exposed nerve endings so you can’t have further damage.”
Fetal spina bifida surgery was first carried in the UK in 2018.
Joanne had to undergo a series of tests after she agreed to the surgery during her 26-week scan including genetic testing, a psychological assessment and an MRI scan.
She then packed her bags and went to London for what she expected to be an overnight stay – but actually beginning a whirlwind three months.
She said: “The next day I was sitting in a café waiting for my MRI when the hospital rang me and said they already had someone booked in for surgery for the date I would have to have mine.
“So, the only way for me to be able to have it done would be to go to Brussels.
“I asked them when I need to go and they said: ‘Well you’ve got an appointment there at tomorrow at 12 o’clock’.
“I thought: ‘How am I supposed to get to Brussels?’. I didn’t even know where it was!”
A friend came to her rescue and booked her on the Eurostar and into a hotel for two nights.
Joanne added: “I was then in the hospital family room for two nights and then I had the surgery.
“At first they were finding things with his brain and they weren’t sure about having it done but then they said it was fine.”
Joanne stayed in Brussels for a week following the successful operation on October 7 then flew back to Liverpool.
She was advised to stay in the city until the birth as there was a high risk of rupture – forcing her to check into a nearby bed and breakfast for the next few months.
Blay was then born on December 6 via caesarean section at Liverpool Women’s Hospital and stayed in intensive care for four days.
He was then moved to Alder Hey Hospital where staff pulled out all the stops to get the baby home in time for Christmas.
It’s now a matter of waiting to see how successful the surgery was as Blay starts to grow – but there’s every reason to be hopeful.
Joanne said: “They did say to me in Brussels that my surgery was an hour quicker than they’d done it before and they managed to get four layers on him when usually they would get three.
“He no longer has hydrocephalus and his cerebellum was pulled down but now it’s coming back into its proper position.
“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.”
Personal trainer Joanne is now back at home with her partner Shaun Ashmead, 44 and her other three children, aged two, 11 and 19.
She added: “I’m speaking out as I want people to take their 20-week scans more seriously, as it’s seen as a bit of a gender reveal.
“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.”