Wednesday, 29 October 2014

Gastroschisis - baby update

So it's taken a while for me to write this, and I suppose to actually sit down and think about the whole situation. 
At 12 weeks pregnant I went for a routine scan, like everyone does and saw little one, everything went well - good heart beat and saw her wriggling around, at this point we didn't know we was having a little girl, but she was such an active baby. At the end the ultrasound woman was very quiet, and my partner said 'so is everything okay?' It was at that point we found out something that would change my pregnancy and the next few years of our lives. 
The woman said she had to get another consultant to come, and we knew something was wrong, but my little one was moving and had a heartbeat so I knew it was something else. She told us that little one had Gastroschisis, a small hole in her tummy and her bowel was outside her skin. I think the shock overcame me as I remember watching an episode of one born every minute and a little boy had the condition. Anyways, they took us into a room and explained it all, and that we would have to have a second consultation and scan at a bigger hospital in the city near us (2 hours away.) two days later we went and had a second scan and they confirmed it all. 
To be honest, I spent the next few days in a blur, telling friends and family about it whilst trying to come to terms with all myself. 
I'm now 32 weeks pregnant and it doesn't get easier, I see my midwife often and after 26 weeks I had to have regular scans every week or two to see how she's doing. With the gastroschisis comes problems - such as low birth weight (she's been 1-2 weeks behind since about 12 weeks gestation.) Also, with the condition it's well known to go into early labour, most commonly between 34-37 weeks, and you are induced about 37-38 weeks because any longer and it can be dangerous. They also have to check the bowel to see it's not dilating (getting bigger or irritated or twisted) I have regular visits to the hospital in the city too, because I have to give birth there too, and that's where she'll have surgery, so it's a long trek especially now I have to go every two weeks. 
I went for my routine scan last week, and we found out that her bowel has started to dilate, they think it's possibly because her bowel may have got twisted, she's still behind on her weight but not loads, which is good though. I also saw her surgeon. When she's born she will have immediate surgery, and if they can 'fit' the bowel back into her they will do that straight away if not it will go into a silo (like a bag, with the bowel suspended above the hole) for 3-5 days until the bowel basically sorts itself out and then she will have surgery to put everything back inside her. 
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.
My little one was diagnosed at 12 weeks, and 20 weeks later I think I'm finally coming to terms with everything, there is a high success rate with the condition and I have a lot of faith in the hospital I will be at, they have been brilliant. It's taken me a lot to write about this, but I want people to understand the condition and I don't think there is a lot of knowledge about it, I only knew a tiny bit of information before hand through stumbling along a programme a number of years ago. My little fighter will get through this and I hope to share my journey with you all. 
If anyone wants to message me, or get in touch for support if you are going through the same thing, or wanting to know anything then please do. 
Holls x

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22 year old textile designer & mum to a little miracle.
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Maira Gall