Gastroschisis

Hello all,

My name is Tracy and it is nice to see a supportive site such as this for gastroschisis. I was born on May 20, 1978 with this unfortunate issue. I am now 30 years old and very healthy! I wanted to write to let all of those parents out there know that your child can live a healthy life. I have a beautiful daughter that was born with no problems at all. Chloe is healthy and there was no sign of any issues during pregnancy or at birth.

Because my gastro was so long ago, I have a large 1 inch deep scar that runs from my breast-bone to my pelvis. The scar has always been a sort of medal for me and although babies today will have a belly button and very little scaring…still be supportive. My parents were wonderful at letting me know that I was unique and that was special. I remember as a young girl showing my friends my “cool” difference.

God bless all of the parents going through this now. Your babies are beautiful and it takes special people to deal with an issue like Gastroschisis. However, your babies can live full lives! The only issues I’ve had are blockages a couple of times in my life. I was 14 the first time a blockage snuck upon me and 26 the second.

I hope I haven’t bothered all of you with the fact that I’ve told my life story…but I know how worried I was thinking my child would have this. I can’t imagine how scared the parents of babies with this abnormality are. I’m sure every parent is scared for their future and the here and now. Feel free to ask any questions! I am very open about it.

Have a blessed week!

Tracy

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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.

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