A mother whose baby was born ‘inside out’ due to a rare condition which causes organs to develop outside of the body has revealed her shock.
Ashlie Fowler, 29, from Bury, Greater Manchester, was told 12 weeks into her pregnancy that her first child would be born with gastroschisis, a birth defect which stops the abdominal wall from forming completely.
Despite being prepared, the vehicle technician said she was still stunned when her baby was born and has shared pictures showing the extent of the condition, which left Koa needing to stay in hospital for three weeks after his birth.
The newborn is now five-weeks-old and is happily living at home with Ashlie and father Carl, 29.
Ashlie Fowler, 29, from Bury, Greater Manchester, was left shocked after her son Koa (pictured together) was born with his organs outside of his body due to a rare birth defect
‘He’s home now and doing well, he’s home much sooner than he expected to be. He’s called Koa, which means fighter or warrior in Hawaiian,’ Ashlie said.
‘Me and my partner surf so it’s just a name we’d heard of before, and we named him before we found out what was wrong with him. So when we found out it seemed very fitting.
‘His weight is the biggest concern because with his bowels on the outside he wasn’t allowed to eat anything for the first week.’
Gastroschisis is a birth defect of the abdominal wall. During growth in the womb, the baby fails to properly fuse their anterior body wall together.
And, with the area not properly closed up, organs can soon start to leak out of the body, to the right of the belly button, as they develop.
This can even mean that the stomach and liver escape the body in extreme cases.
Ashlie said she and partner Carl, 29, are concerned about Koa’s weight as he wasn’t allowed to eat anything for the first week after birth. Pictured: Koa just after being born
Ashlie said: ‘At my 12-week scan I found out, so I found out quite early on.
‘I was mortified, obviously I didn’t know what it was, the scanner just said that the bowel was on the outside and my heart just dropped.
‘I had no idea what that meant.
‘I’m not at all medically qualified so I didn’t know whether it was worse than how it sounded.
‘Once I’d started seeing specialists they were quite confident he would be okay.
‘We had to go to a specialist hospital, he couldn’t be born in a regular hospital.
Ashlie admits she had no knowledge of gastroschisis until learning at her 12-week scan that Koa would be born with the condition. Pictured: Koa shortly after birth
What is gastroschisis?
Gastroschisis is a type of abdominal wall defect. It occurs when a child’s abdomen does not develop fully while in the womb.
Early in all pregnancies, the intestine develops inside the umbilical cord and then usually moves inside the abdomen a few weeks later.
In gastroschisis, the abdominal wall does not form completely so the intestines develop outside and are open to the air when the child is born.
Doctors don’t know what causes the condition. But it is commingle increasingly common, aseptically in mothers aged under 20-years-old.
But the incidence rate is still low, with one in 3,000 babies born with the condition each year in the UK.
It is usually diagnosed through routine prenatal ultrasound scans.
Many children with gastroschisis are born prematurely, usually at around 35 weeks.
Most babies with the birth defect are born naturally, but some may need a caesarean.
The outlook for children with gastroschisis is good, with the majority growing up to live normal lives, working and raising a family.
Research shows that children with simple gastroschisis, where no damage occurred to the intestines stay in hospital for about a month and start to feed normally within a few weeks of treatment.
Source: Great Ormond Street Hospital
‘They wanted to just do a natural birth, but he was breached so I had a c-section in the end anyway.
‘They look to operate on him within four hours of birth. I had the c-section, and he was immediately put into an incubator and whisked away.
‘After he was born they put all his organs into a bag because they don’t want it to dry up or lose heat, or get infected.
‘I don’t think he was in any pain, because when I saw him for the first time he was all wrapped up and happy in the incubator.
‘I couldn’t hold him straight away as they said he wasn’t stable enough yet, plus I was still getting cleaned up after surgery, but he looked happy in his little hat.’
Koa was initially fed through a catheter towards his heart for a week after birth, to avoid using his organs too much.
Ashlie added: ‘He was on morphine for three or four days but after then was just on paracetamol.
‘He was only in the hospital for about three or four weeks – which they said was incredible as he was expected to be in for around six.
‘If any more of his organs had come out of his body the risk would have started to increase, his stomach could have come out for example and a section of his bladder had already’.
Ashlie was discharged from hospital quickly, while Koa had to remain to gain strength after his operation.
Getting up at quarter to five every day to drive the nearly hour-long journey to hospital, Ashlie spent days with her son by her side as he recovered – often alone.
Ashlie said Koa (pictured) spent less than four weeks in hospital, despite initially being expected to be in for around six
Ashlie, who was often alone while Koa was in the ICU, said the NHS staff at St Mary’s Hospital have been incredible. Pictured: Koa home from hospital
There were difficult times, with family being unable to visit due to Covid restrictions.
However, Ashlie is thankful for the amazing work of NHS staff.
She said: ‘The NHS have been incredible. St Mary’s Hospital was just incredible.
‘If it wasn’t for them he wouldn’t be alive right now. They come and check on him every few days too to make sure he’s putting on weight.
‘Once Koa was in the ICU that was hard because it was just me and Carl, and he’s obviously had to work to support us, so I was on my own a lot.
‘My mum got a lot of phone calls in tears’.