Gastroschisis

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.

hi, i have a little girl called Ebony leigh, she was born with gastroschisis. after she was born they put a silo on around her bowels for a week then she had her operation which was a succsess. My daughter is now seven weeks old and still in SCBU.

She just wont tolerate her milk and is only on 1ml every 2 hours and her TPN to keep her nutrients up. It just seems every one who i have read about or spoke to with babies that have the same condition have only been in a few weeks. Its really fustrating i just feel like im missing out on her. I was just wondering if anyone else felt the same way it would be really good to hear a reply
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I recently wrote a piece on my daughter, stephanie, who was born in june 1996.

She had Gastroschisis and was born at 38 weeks. She had her operation and treatment at Lewisham hospital in London.

I have noticed a few new parents on this website who are having a bad time with their news of diagnosis and treatment.

Please keep positive, it’s hard, I know. Gastroschisis isn’t as rare as it used to be 10-15 years ago and the treatment has vastly improved since then. Medicine is improving and the chances of survival rates with Gastroschisis babies are rising.

I’m sending with this post….a huge hug to you all.

Sherry Sleney x x x

My son was born with Gastroschisis and has had an amazing recovery, having left Addenbrookes after only 13 days and no real problems other than very slow weight gain in the initial 6 months.

He is now on the 75th centile and 14 months old.

However he has lately started suffering with really bad constipation. This morning he almost screamed the house down trying to pass a stool. he has a reasonably balanced diet, and I try to give him prunes every few days, but he is still in pain at least once a week.

Has anyone else had this problem?

I have a daughter who is going to be 12 in june 2008. she was born with gastroschisis. i found out she had the condition at my 16 week scan. i was nearly 17 years old and single. she was born in Lewisham hospital and had surgery to fix the problem straight after birth.

i saw her for the first time aged 8 hours old. she was fed orally for the first time aged 2 weeks and she came home aged 4 weeks. she is a happy and healthy girl who i still look at in amazement every day.

She doesn`t have a normal belly button but is aware of her birth and why she has a different tummy button. i want you all to know…those of you who are expecting a baby with gastroschisis or have recently given birth…that its not always a dark tunnel. it will be a long and difficult journey but keep positive and enjoy your special, brave child who you are blessed to have.

i am happy to email anyone personally. email me at sleney@hotmail.co.uk

sherry sleney

I was born with gastoschisis , which has left me with no belly button and a massive scar , i was born prematurly (2lb) and very nearly died ! i am 17 and no different from anybody else now apart from various scars all over my body . I was just wondering if this condition would have affected my fertility ?? I was told that one of my ovaries were damaged ?? Can anybody else help me ??