Life after gastroschisis

At her 12-weeks scan, Lisa discovered that her baby had a rare congenital defect. The next nine months were a rollercoaster of emotions. Here, she tells us about her experience at Great Ormond Street Hospital (GOSH). 

“When I was told by the midwife that my baby had gastroschisis [where a child is born with organs outside their body] I was in a state of shock. I was immediately booked for another scan the next day and I didn’t sleep at all that night for worry. Although I’d never heard of gastroschisis I looked it up on the internet when I returned home, despite the midwife warning me not to. The pictures I saw on the internet really scared me.”

Referral to GOSH

“After my local hospital confirmed that Faith had gastroschisis, I was referred to GOSH and University College London Hospital (UCLH). Initially being referred to the hospital only made me more nervous as I thought only really serious cases were referred there. However, the monthly meetings with surgeon Mr Joe Curry really put my mind at ease. Joe was the first person who was able to talk me through the condition in depth, explain what would happen at birth and the plans that were being put in place.”

Giving birth

“I was induced early, as is standard practice with gastroschisis, and gave birth to Faith in UCLH at 37 weeks. She was born with her bowel and half of her bladder outside of her body, although when I came to hold her she’d been wrapped up in cling film and a towel so I couldn’t see most of that. I was allowed to hold her for a precious minute before she was rushed over to GOSH in an incubator. I was told I had to wait in the hospital for six hours before I was able to follow her to the hospital, which felt like an eternity. My husband accompanied her but has never really spoken about the whole process. As Faith was his first child he found it really tough and blamed himself.

Major surgery

“By the time I arrived at GOSH, Faith had already had her first major operation. They’d been able to put most of the bowel and bladder back in her body but not all of it. When I’d held her for that one minute after birth she was so well wrapped up that she looked like a normal baby. Now to see her on the intensive care unit with wires and machines everywhere was quite a shock. At one stage she had cannulas in both hands, both feet and in the side of her head. We were assured she wasn’t in pain, but it just looked really horrendous.

“Over the coming days, the doctors and nurses slowly but surely started tucking the rest of her organs back into her body. It was a very stressful time, especially when Faith dislodged her silo that was holding her external organs so had to go down for further surgery. I stayed at the hospital the whole time and was fortunate enough to have a room at the patient hotel, which was a great help. My husband would come and stay but he also had to look after my two other children so it was really hard for the family.

Further surgery

“After 12 days, Faith was taken off the ventilator and moved to an inpatient ward. After a week on the ward we were informed she was being taken to theatre with the hope that they’d be able to completely move all her organs into her body. If it was successful she’d be taken to intensive care, if not then we’d be back to the ward. While I was delighted when I was told to meet her in intensive care, I was shocked when I saw her. She was now on an oscillator as well as an incubator as her body couldn’t handle the arrival of all her organs. The next 48 hours on the oscillator were probably the lowest point of Faith’s whole journey, from the happiness of having her body closed to watching her fighting for her life. I didn’t leave her side for a minute over those 48 hours.

Coming home

Thankfully, Faith showed what a little fighter she is and made it through this critical time. When we were moved back to the ward and she was able to feed for the first time I knew she had a good chance. This was the first time her dad was able to hold her and we were able to give her a bath as well. After a brief stay at our local hospital after leaving GOSH, we were able to bring Faith home. The first year was a bit up and down, she had her Hickman® line removed, which was a significant milestone but spent her first Christmas in the local hospital as she was susceptible to chest infections. However, she now just has to go back for regular check-ups at Great Ormond Street Hospital with the wonderful surgeon Kate Cross. All she’s left with is a small scar which she’s happy to show off to anyone!

Day-to-day life

“Faith is now four years old and loves ballet, painting, stickers and is adored by her older brother and sister. Faith’s sister initially gave me the silent treatment when I returned home as I’d been away for a month. However, the whole family is now doing really well and Faith has just started at her local primary school. She’s very independent and tough, she never cries, and I think that comes from having to fight just to stay alive when she was born.

“The staff at GOSH have done so much for Faith and our family – I wouldn’t want her to go to any other hospital in the world. The staff are just amazing. This mix of expertise and commitment is what makes the hospital so special. GOSH gave my daughter Faith a chance at life and I simply can’t thank them enough.”

Medical Conditions