A mother whose baby was born with organs outside of his body as a result of a rare condition has revealed her shock.
Ashlie Fowler, 29, was told 12 weeks into her pregnancy that her son—her first child—would be born with gastroschisis, a rare condition that affects 4 in every 10,000 babies.
It is a birth defect of the abdominal, or belly, 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 bellybutton, as they develop.
This can even mean that the stomach and liver escape the body in extreme cases.
“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,” said Ashlie, who became aware of her unborn child’s condition very early on. “I had no idea what that meant.”
Ashlie, a vehicle technician, admits that she is not at all medically qualified, so she had no idea whether it was worse than it sounded.
“Once I'd started seeing specialists, they were quite confident he would be okay,” Ashlie said.
The couple had to go to a specialist hospital to deliver the baby, since he couldn’t be born at a regular hospital, according to Ashlie.
“They wanted to just do a natural birth, but he was breached, so I had a C-section in the end anyway,” Ashlie said.
Even though Ashlie was prepared for what to expect, she was still stunned when her baby, Koa, was born.
Koa’s medical team was looking at operating on him just four hours after his birth, and they whisked him away right after he was born, putting him in an incubator.
“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,” Ashlie said. “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.”
Ashlie couldn’t hold him straight away as she was told that Koa wasn’t stable enough yet, and she was also getting cleaned up after her surgery. However, she remembers Koa looking happy in his little hat.
Koa was essentially fed through a catheter towards his heart for a week after birth, to avoid the use of his organs.
“He was on morphine for three or four days, but after then, was just on paracetamol,” Ashlie said. “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.”
While Ashlie was discharged from the hospital quickly, Koa had to remain so that he could 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. When Koa was in the ICU, it was hard because Koa’s dad, Carl, 29, had to work in order to support his family.
There were difficult times, with the family being unable to visit due to Covid restrictions—but Ashlie was thankful for the amazing work of NHS staff.
“The NHS have been incredible. St Mary’s Hospital was just incredible,” Ashlie said. “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.”
Koa is now over 5 weeks old and is happily living at home near Bury, Greater Manchester, England, with mom and dad.
“He’s home now and doing well, he’s home much sooner than he expected to be,” Ashlie said. “He’s called Koa, which means fighter or warrior in Hawaiian.
“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.”
Currently, his weight is a concern, Ashlie said, since with bowels outside his body, he wasn’t allowed to eat anything for the first week.
