Harrison McLaren was still in his mother’s womb when doctors realised his stomach and intestines were growing outside his body.

His mother Jessica was in her 20th week of pregnancy when an ultrasound scan revealed her tiny boy had a rare birth defect.

Little Harry had a hole next to his umbilical cord, allowing some of his organs to spill outside his body into the amniotic sac — the transparent bag of fluid that surrounds the baby during pregnancy.

Mrs McLaren and her husband Christopher were so shocked they both took the next few days off work to process the confronting news together.

Harry had a condition known medically as gastroschisis — a hole in his abdominal wall.

“It was a very emotional few days,” Mrs McLaren recalled.

“Obviously, you question how and why this could happen.

“You start to go through everything in your head. I’m quite a healthy person. I look after myself and eat really well and so does my partner.

She was devastated, confused, scared and angry but also determined to learn as much about the condition as she could.

“You’ve just got to deal with it and process it and concentrate on the journey ahead,” Mrs McLaren said.

The McLarens, who live in Stafford Heights, in Brisbane’s north, were referred to the Mater Mothers’ Hospital maternal fetal medicine unit, which manages the bulk of gastroschisis cases in Queensland.

“They were phenomenal,” Mrs McLaren said.

“The way they speak to you, there was so much love and care. It’s not so much in medical terms.

“They see these babies day-in, day-out. The care they provide to not only your baby, but yourself, and your family, is world class. I’m very thankful to every person that had a role in Harrison’s care.”

Surgery soon after birth

The McLarens were told the survival rate for babies with gastroschisis was more than 90 per cent but the severity of the condition varied and Harrison would need surgery soon after birth.

The odds were “very high” they would be able to take their baby boy home — a brother for their daughter Lara — but nothing could stop the lingering concerns for their unborn child.

“There was still that fear and possibility that you might lose him or he’s going to have a tough life,” Mrs McLaren said.

“You always prepare yourself for the worst but hope for the best.”

Mrs McLaren’s labour was induced at 36 weeks.

Harrison was born about 24 hours later — at 6pm on November 28 last year, weighing 2,320g.

Although Mrs McLaren was told beforehand she probably would be unable to hold her newborn straight away, she was allowed to cuddle him for a few precious seconds before he was “whisked away”.

By then, she was well-prepared for the “confronting” sight of her baby’s intestines and stomach sitting outside his body.

“I’m the type of person that needs to know everything inside out, back to front.

“I researched everything I possibly could, tracked down all of the podcasts around the world, listened to different medical staff… and was part of a lot of Facebook groups online that were connected with a lot of families that have been through this.”

But seeing her baby in the Mater Mothers’ neonatal intensive care unit a few hours after his delivery, with tubes hanging out of him, was “overwhelming”.

Over several days, surgeons started pushing Harrison’s organs back inside his body and three days after his birth, he was transferred to the Queensland Children’s Hospital (QCH) for surgery to finish the job and close his abdominal wall.

For Mrs McLaren, watching her baby being wheeled from the Mater to the QCH operating theatres was a “very emotional” part of the journey.

‘An emptiness I have never experienced’

The mum-of-two said having to leave hospital without her baby, a couple of days after giving birth to him, was also taxing on her mental health.

“Walking out of those hospital doors without Harry in my arms was an emptiness I have never experienced,” she said, choking back the tears.

But less than a month after his surgery Harry’s parents were finally able to take him home, just in time for Christmas, when doctors were assured he was feeding well.

Mater director of neonatology Pita Birch said about four babies in every 10,000 live births were diagnosed with gastroschisis, to varying degrees of severity.

Medical mystery

Complications associated with the condition can include damage to the intestines — also referred to as the bowel — that can cause sections to die off, resulting in a blockage.

“You can get cases where the bowel is all matted together. They have to do surgery on the bowel itself and cut pieces out of it and separate it before they … put it back together and put it back inside. Infection’s a problem as well before the bowel’s been put back inside.

“It can become very complicated.”

Dr Birch said the cause of gastroschisis remained a mystery, although it was more common in babies born to younger women — those aged under 20.

“There’s been lots of speculation around potential risk factors,” Dr Birch said.

“People have thought about things that might happen in pregnancy and toxin exposure has been proposed. Sometimes there can be a geographical concentration of babies that are born with it. We do get clusters from time to time. But no-one’s found anything that’s conclusive.”

Gastroschisis risks

Dr Birch said labour in pregnancies involving babies with gastroschisis were often induced earlier than full-term.

“There’s an increased risk of stillbirth if you leave them go to term,” he said.

Women are encouraged to deliver vaginally, if possible.

“The outcomes are better for babies delivered vaginally than they are for a Caesarean section,” Dr Birch said.

“There can certainly be a risk of damaging the bowel during a Caesar.”

Harrison will turn nine months old next week and is doing well.

He is “very, very close” to crawling and is already able to say mum, dad and Lara — his four-year-old sibling.

“He’s a chatty little guy,” his mum said.

“Coming out the other side and looking back on it, I just think he’s the most incredible, resilient little boy.

“I’m just very, very thankful for now and how healthy and happy he is. I feel very lucky and blessed.”

Doctors cannot rule out future complications.

“There are cases of babies that have blockages later on in life where they have to go back in and operate but as it stands, they’re really happy with how he is,” Mrs McLaren said.

Big sister Lara enjoys reading and singing to her brother — You Are My Sunshine is in her repertoire.

After witnessing her brother’s first weeks in hospital, she’s already planning a career as a health worker.

“When she speaks about it now, she says, ‘I want to be a nurse or a doctor to help babies’,” Mrs McLaren said.

“She’s a beautiful big sister.”