MY TWINS
Finding out your expecting twins is a big shock in its self but finding out one of them has Gastroschisis was a lot to take in on my first scan.
I had my amazing girls at 36 weeks chloe was fine but amber was taken straight away to be operated on my partner and mum got to meet amber b4 the operation but i was too ill.
That night amber was left with 36 cm of bowel and had to survive on her PN it was two weeks b4 she could try milk this was 1ml every 2 hours it took along time for her to tolerate this but she never gave up. Unfortunately she developed liver disease and the only way to correct it in time was to get her to tolerate more milk she suprised us all and to this day her liver is fine
Amber spent 4 months in hospital b4 she could come home on her PN since then she has been back and forward to hospital with infections and experiments to get her off her PN but she is not ready just yet.
Amber and chloe are now 21 months their is a big difference in their height and weight but Amber makes up for that with her cheeky little ways Amber is going for tests next week to see if their is any more the medical team can do for her. we have been told so many times she wouldn’t make it, it just goes to show no matter how ill your child is if you don’t give up they will do their best.
I would love to hear from anyone who has had Gastroschisis in their family.
my baby has gastroschisis
Hi, Me and my husband just found out about 3 weeks ago that our little girl has gastroschisis, They have been the worst three weeks of my life and I don’t know what to do! Apparently the doctor says that its a lot of bowel that she has outside the body, and all i can do is pray and cry for my baby to be ok… Can anyone out there help me? can you tell me if she will be ok? if she will have to undergo many more surgeries? I am very new at this, I did research and it completely broke my heart to see a baby like that. Please help.

