Looking for answers 10 years on…
Hello everyone,
Im new to this site although i have posted on another gastroschisis forum before.
My daughter niamh, just turning 10, was born in Aberdeen on the 19th July 2000 at 36 weeks. 90% of her bowels were outside of her body and to cut a long birth story short she left there 5 and a half months later minus 1 meter of small intestine, an illiostomy and 7 operations under her belt. She has undergone many tests since then including endocopys, barium meals, various scans blood and stool tests. She gets her blood taken every 6 to 8 weeksnow this has been going on for about 3 years now.
At nearly ten years old all the doctors can really say is that her bowels are ‘abnormal’ as they are distended something like colitis and she has Short bowel syndrome (not unlike ibs) and is chronic anemic, requiring the highest dose of iron that someone her size can manage. She recieves vitamin B12 injections every 2 months which i now do at home myself as this will be for the rest of her life. She is quite small for her age, and she has no belly button and a very large 5 inch scar with solid scar tissue underneath. We are currently waiting an appointment down in sheffield to see an endoscopy specialist who has and endoscope that can see further than normal ones. Niamhs bowels are ALWAYS loose, they always have been although she has control of them.
I guess im just looking for similar sufferers to share stories with, and i know that Niamh would love to email other children her own age to help make her feel like shes not the only one. Ive heard so many gastro stories, but many of them seem to be that after infancy and the bowel being put back, that no other side effects are present.
Hope to hear back from someone,
Regards
Sophie
28 weeks
So I found out during my first ultrasound at 12 weeks that my son has gastroschisis. At first I was absolutely gutted and so upset about the complication, but since then my mind has been put at ease by all the doctors we’ve spoken to. They’ve all been really reassuring and generally quite calm about it all! To be honest I really enjoy getting scanned so frequently…I can’t get enough of watching my little one on that screen! The foetal medicine doctors at the specialist women’s hospital I was referred to tell me that he is growing well, and that is still only the small bowel protuding from the defect in his abdomen. Everytime I’ve been so far they’ve seemed really positive and happy with how things have been going, so it’s hard not to be optimistic. I don’t want to start worrying until they do if that makes sense! But it seems like one day things can be fine, and then all of a sudden things could get much worse 
The only part that freaks me out is the uncertainty of it all…as I’m fully not expecting to even make it past 36 weeks. Its so hard to prepare for everything when you don’t really know when the baby will be coming! My antenatal care is being completely transferred over in only 6 weeks time, so I’ll be getting scans weekly and whatever else they’ve got planned. Me and my partner are currently waiting for a letter from the Children’s Hospital that bump will be transferred to to have his operation. Hopefully things will carry on going smoothly. I’m also reassured that I can have a vaginal birth…I REALLY don’t want to have a c-section, as then that puts me out of action really for 6 weeks after while I recover. But my foetal medicine doctor says even though they’ll probably induce me, its unlikely they’ll opt for a c-section unless there’s further complications, as a natural birth is actually better off for gastro babies.
Sorry for the rather long post…just wanted to jot everything down somewhere really so I can make sense of it all in my mind! Input is appreciated though.
Louise x
