Gastroschisis(gas.tros.chi.sis) Support and Resources

Hi i was wondering if any one could help. I am currently 28 weeks pregnant and our baby boy has gastroschisis, we went for our regular scan yesterday and although the bowel not yet showing signs of dilation and the fluid looked fine they are saying they are slightly worried about the size of the baby, now i know from reading everything i can about this condition that the babies tend to be smalled but they are saying that he only measures over 25 weeks and weighs 1lb 10oz (which does seem small for 28.5 weeks) i am really worried they have said that as long as he grows by next scan there is nothing to worry about, has any one else been told the same and what do they do if he hasnt grown any? i am really worried and my next scan is not for 2 weeks so would be grateful for any advice/experiences thanks xxxxx

I was 18 weeks when I found out Dylan had gastroschisis.  It was a devistating day.  He was my fourth, and I had had all healthy children.  I spend most of my summer researching the condition and getting prepared for our hospital stay.  I found it very helpful to hear other peoples stories, so I had to share ours.

Dylan was born 10/9/08.  I was induced at 36 weeks and had a very normal delivery, besides being at a high risk hospital with NST’s and extra ultrasounds, everything was fine.  He measured normal in his ultrasounds, besides his tummy which always measured 1 week behind.  Fluid levels were normal, a good thing.  All went well.  He was born with all his bowel out, but it was all very healthy.  He was put in a silo just hours after delivery.  I got to see him once on his way to the children hospital, then I joined him 6 hours later.  He looked good,  was breathing great and was not in pain at all.  He was 26 hours old when he had his closure, it went well.  They took the vent out the next day.  He did great after, having his first bowel movement the day after surgery!  He got moved out of the NICU at 5 days old because he was “to healthy to be there”  we moved down a floor to recovery.

He started feeds at 1 week old and he loved it!  He only ate for 5 days before he started puking it up.  Non of the breast milk I pumped made it through him and he was not doing well.  It was weeks of x-rays and biopsies and blood draws before they desided he needed another surgery.  He had a blockage, they removed 2 inches of bowel, his appendix and closed him up.  He recovered very weell again and started with feeds just a week later.  It went very well this time and the milk made it through.  He had to get a blood transfusion which was very hard for me, but very good for him.  Then I got to breastfeed, and he did great!  He did so good it was only a couple days later we got to go home.  He was off TPN and gaining weight, so off we went.

Dylan is gaining weight like crazy now, and a happy baby boy.  He has some awesome scares to talk about and is a stronger man already.  It was a journey, but it was worth every day we spent in the hospital.

Leah

My daughter was born with gastroschisis on September 24th 2008. She had surgery the day she was born and was in the NICU for 6 weeks. I created a video of her first two months. I hope that it touches you and helps new parents who are expecting a baby with gastroschisis or already have a child with gastroschisis.

Photo and video editing at www.OneTrueMedia.com

My name is Ashley im 21 years old and my husband and myself have a Beautiful 2 month old daughter!She was born on October the 10 2008 weighing 6lbs 9.8 oz and was 3 weeks early.

She was born with a  gastroschsis.

I found out that she had a gastro. at 14weeks pregnant. it was the craziest day ever i have never heard of sucha  thing and really didnt understand it. I Went to the doctor every weeks after that until she was born and the day she was born was the happiest day of my life she was so Gorgeous.Well her stay in the  NICU was Okay she was in the for 25 days . She was born with almost all of her intestines out and her stomach was out.# hours after my c -section she had her surgury and was off to the NICU.The surgeon said she was one of the worst she seen, but they said she did the best that hes seen also,.

Two babied a year diagnosed with Gastroschsis goes home within 4 weeks.

Emmi was there for 25 days and got to go home We were so excited and so happy , Shes Amazingly Strong and Fabulous.

She is the love of my life and i couldnt ask for a better Baby.

She is going to be 2 months old on December the 10 and sleeps all night long.

Se doesnt cry nor fuss .What else could u ask for=)

hi im new to this so i hope I’m doing it right!

my nuborn baby has been diagnosed with gastroschisis. this will be my third child. i have looked and looked all over the net for any kind of pretreatment for this condition, or if there is anything i could be doing during my pregnancy to help. my hospital seem to be keeping me in the dark. form 30weeks on they might answer some of my questions but as I’m only 16weeks waiting till 30+weeks will drive me mad! also worried it will be to late by then for any help that might be out their for my unborn baby.

i have heard about amniotic fluid exchange in pregnancy but done know much at all about it. if there is anyone out there that might know anything about this (no matter how small) could you please let me know. or if anyone has any information on anything really it would be so much help. from a very worried mum thanks. my email is jrb_brb@hotmail.co.uk