Generally, babies with Gastroschisis are born preterm due to complications or they come of their own accord, after birth the baby is taken into surgery immediately after birth, therefore skin to skin contact isn’t allowed, the baby is wrapped in clingfilm then is operated on.
The neonatologists will attempt to place the bowels inside the abdomen, sometimes this is successful, but in cases like my daughters it wasn’t.
If putting the bowels inside is unsuccessful then they place the bowels in a silo, where they let gravity help, slowly going into the body, once again sometimes this is also unsuccessful, which meant they would have to manually place them inside by opening the abdomen a little more and poking the bowels inside.
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. – NHS
My Gastroschisis journey with my daughter
I found out I was pregnant at 7 weeks (could never keep track of periods as they were always all over the place), we arranged our scan for 12 weeks, I was 11+6 weeks at the time of the scan.
I was sitting outside the bus stop near the maternity unit and I said to my other half that I felt something wasn’t right and got very scared, he reassured me and we went in. My name was called, we entered a dark room with two screens, one for the sonographer and one for me, but he didn’t turn the screen on for me.
He started scanning me, then his face dropped, he scanned further, then turned the screen further to him, he said he could see a heartbeat, then he stopped and told me not to move.
I was terrified, but he wouldn’t tell me. He come back with a consultant who scanned me then turned to me and said “there seems to be a problem with the baby, we can’t be sure as of yet but I think your baby has something called Gastroschisis”
My partner and I look at each other in confusion, he then explained further, that my baby’s bowels were on the outside of the body, I had no idea what this was at this point. He then explained the best thing to do was terminate. I said no. I’m not wasting a life, he saw this as a burden, saying that I would need more appointments, scans, close monitoring, and I would need to be shipped off to a different hospital that could actually deal with this “problem”.
I never saw it as a problem, I saw this is as a life who was already strong. So I proceeded to carry on with my pregnancy. We were booked in for a scan two weeks after the first just to confirm that Gastroschisis is, in fact, the defect. At this scan, we found that her bowels had actually come out of her body more.
I was 14 weeks at the time on the second scan, then we went to an 18-week scan, where we were told that more bowels had come out of the abdomen.
Were we having a girl or a boy?
At 20 weeks we were set on finding out the sex of our little fighter, she was shy at first and there was so much bowel out and it was swollen that they couldn’t determine the sex.
I was booked for another scan at 22 weeks in Southampton, where we met neonatologists and we were shown around the place where my fighter was going to be born and where she was going to stay.
We then went for our scan, where we were told the news that she was most certainly a girl, but her bowels were starting to swell a lot more, from there we saw differences in her belly shape and found that her liver was on the outside too.
Every scan we had from this point onwards wasn’t good news. They had a feeling her bowels were twisted and she had a blockage in my tummy.
At 33 weeks after going back and forth from two hospitals, we were told that it was the time I was to be admitted to Southampton hospital for monitoring., I was starting to show signs of Pre-Eclampsia so they were worried about me and baby at this point,
At 34 weeks they come into my room, explaining they needed to get this baby out fast, my blood pressure was too high, I had ++4 protein in my wee and I was seeing stars. My baby’s heartbeat was erratic going from 43 beats a minute to 200, without even moving.
My beautiful princess was born
For two days her movements had reduced, so they decided that it was time, on Monday the 21st of March 2011 Elise was born, she was due 01/05/11, she was whipped out of my belly and all I saw of her was a foot.
Nothing else nothing more. I didn’t hear a cry. Nothing. They started resuscitation on her as she wasn’t breathing, then got to work on her bowels, I had no idea what they were doing to her.
I was stitched up and taken to recovery, and my daughter stayed there being operated on. As two hours went by I had heard nothing, they were still operating, after 6 hours, someone came into my room, she started to explain what has been done.
They found that her bowels were matted together, she had her large, small intestine, pancreas, appendix, liver, and stomach on the outside of her body. They tried to place the bowels inside but they had failed and needed to put a silo on, I was still unable to see my baby for a further 14 hours.
When I was finally able to see my baby, I was told to prepare for the worst but hope for the best. When I saw her, she didn’t look like a baby, she was connected to so many machines, I couldn’t even see her face.
This is where her fight began
They had said she had something called an atresia, but this atresia had already twisted and come apart so she basically had no connection to her stomach, as she was 6 weeks early and too small for more surgery. They decided to keep her alive with machines and they had clamped her stomach so bile didn’t seep into her abdomen.
They then realised that the silo that was keeping her bowels wet and warm wasn’t doing the trick anymore and they had to place her bowels back inside as she was losing too much fluid around the silo site. From there they said that things weren’t looking great and I had to prepare myself for the worst.
We were placed into a room where parents could say their goodbyes.
I wasn’t prepared to do this and told my daughter to keep fighting, to keep going, I feel she listened because she started picking up and she was then strong enough for her operation to attach her bowels back together, she was taken over to the main hospital for her operation, where she was in theatre for 12 hours.
They finally came to find me and told me it was successful. They had removed her jejunum and around 40 odd centimetres of the bowel. She spent the night in PICU under sedation, she had two tubes in one nostril, breathing tubes, central line, cannulas, heart monitors, blood pressure cuffs, well everything attached to her tiny body.
She could be coming home
She was then moved back to NICU, where we waited a week then she started feeds. They started with one tube, this tube went past the repair join, then they started tube feeds to her stomach, things were looking up. She was then able to start feeding on the breast at 8 weeks old, they said if she carried on like this she would be home in two weeks.
Low and behold she carried on feeding, but her weight was an issue, at 9 weeks old she was 6lbs 8oz, so they needed to keep an eye on that, we were finally sent home. This is where the weight struggle started, she wasn’t getting enough nutrients from my breast and wasn’t gaining weight, an appointment was approaching and she had gone from 6lbs 10oz from discharge to 6lbs 2oz, they weren’t happy.
This is where the weight struggle started, she wasn’t getting enough nutrients from my breast and wasn’t gaining weight, an appointment was approaching and she had gone from 6lbs 10oz from discharge to 6lbs 2oz, they weren’t happy.
They wanted to admit her to NICU but they came to a decision to start formula feeding. They gave us a predigested formula and were sent home. Were told to come back in two weeks, two weeks came and went very quickly and we were anxious to see whether she had put weight on, everyone was surprised. She went from 6lbs to 8lbs in two weeks.
We are in hospital as I write this
From there the years went by and we were in and out of hospitals due to her vomiting and having stomach pain constantly, on the 11th January 2016 they decided to finally look at her belly from the inside to see what’s causing this pain, they found she had adhesions that were blocking parts of her bowels.
They removed them, we were sent home, we were only home for 3 days when my girl really started to get ill, she started vomiting large amounts. I waited as I thought it was post op pain and vomiting, but then she started throwing up green bile, from there I rushed her to hospital, it was down to gastroparesis again.
She had an obstruction and an enlarged stomach, we were rushed back to Southampton where she had the adhesion removal. On Sunday then Monday she went back down to the theatre room for another operation, where she had more adhesions removed and more bowel removed as it had narrowed and was looking unhealthy, so now she has no jejunum or duodenum.
We are still in hospital now and she still had gastroparesis. Her bowels and stomach have paralysed. All this is due to Gastroschisis, four years down the line my daughter is still suffering from the aftermath.
.Thank you for taking your time in reading this, if you want more information just ask me.