Understanding gastroschisis

When Mari and her husband, Tryfan, were told their baby, Meila, would be born with an abdominal wall defect, they didn’t know what to expect. Here, Mari shares their story from the moment of diagnosis to Meila’s operation at Great Ormond Street Hospital (GOSH) hours after birth.

"At my 12-week scan, the sonographer told Tryfan and I that there might be something wrong. It looked like our baby had gastroschisis, a condition neither of us had ever heard of. The sonographer explained that our baby’s stomach hadn’t closed properly and that her bowel was outside of her body. 

"We were both in shock – there was nothing about my pregnancy that had suggested anything might be wrong. We had follow-up appointments with a specialist midwife and a consultant at our local hospital, and were then transferred to University College Hospital London (UCLH) the next day. Having these appointments so quickly made things a lot easier as we didn’t have to wait for information.

"The first few days were by far the worst. It was really hard not to think the worst was going to happen. Even though the doctors told us there is a 90 per cent survival rate, all we could concentrate on was the other 10 per cent. We were told it would be difficult and our baby would be in hospital for a long time – we knew it was going to be hard work." 

Premature labour

"In gastroschisis, the birth is induced early to control the place and time of delivery – they planned to induce me at UCLH at 37 and a half weeks. However, five weeks earlier, I started to have labour pain. We went to our local hospital and gave them a massive shock, as some of the midwives had no experience of gastroschisis, although the doctors there had.

"There was a huge team of people in the room when I gave birth because they needed to wrap Meila in clingfilm straight away to protect the organs that were outside of her body. Within an hour and a half she was transferred to GOSH to have the operation. Tryfan went with her in the ambulance, while I stayed at our local hospital a little longer to recover."

Knowing what to expect

"Before Meila was transferred to GOSH, we’d been to visit the Neonatal Intensive Care Unit (NICU) to see what we should expect. I think it would have been a hundred times worse if we hadn’t been shown around beforehand.  I’d definitely advise other parents to make sure they visit the hospital and the intensive care units if they find themselves in this situation.

"Also, each time we went for a scan at UCLH, we met with the surgeon who would be operating on Meila: Mr Curry. At every stage, we had lots of different questions but he talked us through everything each time, which was really reassuring. He explained what could go wrong and how long Meila would take to recover. We were able to prepare ourselves because the team gave us such good information, and it was good to put a face to the people who would be carrying out the procedure. 

"As amazing as it was to talk to the surgeons, the Family Liaison Nurse also gave me some practical advice too. She told us to buy clothes for premature babies so that they wouldn’t completely swamp Meila, and to buy clothes that buttoned all the way up the front in case she had any swelling after surgery. She also gave me a video about preparing yourself for life in hospital and intensive care which was helpful."

Successful surgery

Meila with mum, Mari, and dad, Tryfan
"Meila had the operation when she was about eight hours old. The team had told us that it’s not always possible to move all the organs back into the abdomen in one operation; sometimes they cover the remaining organs with a ready-made mesh sac so they can be gradually moved back over the following days. Thankfully though, Meila’s small intestine, large intestine, stomach and fallopian tubes were all put back in the same surgery which meant we could expect a shorter hospital stay as well. 

"After her operation, Meila was moved onto NICU for a couple of days and then taken to Squirrel Ward, where they started to introduce her really slowly to milk and feeding. Her bowel had been damaged while it was outside the body so they needed to see how well she could ingest milk and process it through her intestines. She was also fed through total parenteral nutrition (TPN), a line delivering nutrients straight into her bloodstream.

"The Family Liaison Nurse had also given me advice on how to express and there was an expressing room on the unit I could use as needed."

Staying at GOSH

"Being able to stay in the parent accommodation made things much easier, as it would have been really difficult to go home at night. Even though we only live about an hour away from the hospital, physically being away from her would have been difficult. In the parent accommodation, I knew that if anything happened I could be on the unit in five minutes to see her. 

"The staff at GOSH have been phenomenal. Every single member of staff introduces themselves to you, whether they’re a volunteer, a nurse or a doctor. Everyone tells you what they’re doing when they’re standing by the bed - if they didn’t, you’d just worry and think the worst. 

"Tryfan and I have said to each other that this process hasn’t been as bad as we thought it would be, and that’s because of GOSH. It sounds weird but it doesn’t really feel like a hospital. It just feels like somewhere where you know your child is going to get better. It doesn’t feel intimidating - any questions we have, there’s someone who’s happy to answer them." 

Looking ahead 

"Children who are born with gastroschisis do really, really well. Meila will be small because she was premature but she can hopefully catch up, although she might be slower at putting on weight to start with.

"With everything the team at GOSH have done and the care they provide, we knew that Meila was in the best place possible for her in the whole world. We were able to come home after 23 days, and she’s doing incredibly well. She’s putting on weight, thriving and doesn’t seem to have any after effects from the surgery or the condition – it’s amazing."

Medical Conditions