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

Hi my name is Maria, I am 20 years old.  I first found out that my baby had Gastroschisis when I was about 15 weeks pregnant through my first sonogram.  I was devastated because I had never heard of anything of its nature and I was like how am I going to go home and say this to my mother.  My boyfriend and I were told by the doctor that this was something that was reparable and could be fixed but that if would could not handle it we were free to have an abortion.  My boyfriend immediately told me no.  It is my first baby first pregnancy and I was not about to have an abortion the baby was almost 4 months. When I was about 5 months pregnant they had told me my baby was a boy. We later came to find out that she was a girl.  Through my whole pregnancy I had a Doctor check me regularly the visits started to become more and more regular to make sure everything else was in and nothing was dragged out along with the intestines.  My doctor told me that she would be there with me throughout the whole pregnancy.  Towards the end I found out she would be the one to deliver my baby which made me feel much more confident and calm.  On Saturday, September 19, 2009 I began to have contractions but they were far apart.  I had called my doctor and told her and we joked around and she told me that if the baby would be born that to try and aim for before Sunday morning, I guess the baby heard her and took her advice.  On Sunday, September 20, 2009 I had contractions at about 10 mins apart.  I was anxious and I couldn’t sleep which was not normal being that throughout my whole pregnancy I did not have problems sleeping. Something that was rare and something in me just kept telling me to get up which finally I did.  When I did I called my doctor she told me to get there and when I got there I had lost all my fluids.  I had to have an emergency cesarean.  My daughter was born at 9:36 she weight 5’5 and 17’1/2 long.  As soon as I heard her cry I started to cry. I got to see her for just a couple of seconds and they quickly took her away to take care of her.  They took her away and place her intestines in the silo to protect her intestines.  The surgeon then told me that her intestines looked good and nothing had to be cut or anything like that.  The first couple of days in the N.I.C.U were tough because I wanted to hold her and I just wanted to take her home.  She got her 2^nd operation to put all the intestines in on September 25^th 2009 and the operation was about two hours long which made me worry but the surgeon then told me that the operation was a success.  Now we are just waiting for them to start feeds and hopefully she will be home soon.  Her intestines have began to function she has had two small bowel movements but they count .

Baby Lilly decided to arrive by emergency c-section on 11th June @ 4.23am weighing 5lb 12oz. 

She is absolutely gorgeous!! 

They whisked her away as soon as she came out, I got a little peek before she left.  I got to see her a few hours after her operation and she had a silo pouch and looked extremely swollen and puffy which they said was from the drugs to paralyse her.  Everyday she looked so much better.  She has been given a long line and is still on morphine etc.  But she was taken off the ventilator today, although she will be back on it Friday when they do the closure operation.

She’s a little fighter and a little squaker at the moment!!  I feel like i’ve known this little girl for ages and it’s not even a week.

It is jusy so worrying.  Not knowing what to expect and not being able to help in any way. 

The first time I left hospital for a few hours to go back home I cried all day coz I didn’t want to leave her on her own.  The nurses here are brilliant and I know she is in the best hands.

I am now staying in accomodation at the hospital but will be going home on the weekend which I am dreading coz I know I will be so upset.  We will be coming up every day to see her but I just hate leaving her.

Did you all feel the same?

hi, my names Shelby and i was born jan 28, of 1990 with gastroschisis.

Growing up i never really had physical problems with my scar.  I was a cheerleader and i played competitive fastpitch softball, sliding and all my scar never hurt or tore, When i was  14 and 16 i had re-constructive surgery on my scar so it wasnt attatched to my stomach muscles and because i was uncomfortable with the 6 inch vertical scar in the middle of my stomach and the feeding tube scar i had on the side of  the scar. Thanks god all my friends were very understanding and open minded with me.

well now that im getting older,  I would like to know if having a child is safe. I would love some feedback on others who have had a child.

And to those who are expecting a baby with gastroschisis, dont worry yourself to death. Your baby will be fine =)          I had a very ordinary life! I wasnt made fun of or anything of the sort.  My life has been great.

- Shelby.

My 14 yr old daughter was born with gastroschisis 2 mths early through emergency c section. She came home after 5 wks and was doing great.After time she had trouble with constipation and had to take lactulos to soften her stools. When she was five her school friends noticed she had a scar and started asking questions. I asked the teacher if it would be ok to take photo’s of Lauren as a baby to school to show the children how sick she was and what she had been through. This turned out to be a great thing because she was geting a complex as nobody else in her school had been born with gastroschisis. We did approach the doctors about cosmetic surgery as Lauren has no belly button they said when she hits teenage yrs they will start consulting us about cosmetic surgery. Over the last few years i noticed Lauren’s scar has pulled inwards like its being sucked into her stomach. Now Lauren has a new problem that has arisen as she is having problems stretching and playing some sports in school. We have been to see a consultant who has said the scar tissue in her stomach has fused to her stomach muscles,thats why she cant stretch out properly. Has anybody experienced this?

I am currently 23 weeks pregnant and was told at 17 weeks that my daughter had gastroschisis and was referred to nottingham hospital, i was wondering if anyone else has got any experiance with this hospital and how they dealt with your pregnancy, also i was wondering if anyone could tell me how long it is before the mother is discharged from hospital and the baby still in there as this is a major worry of mine as i live an hours drive away from the hospital but do not drive myself.

any advice appreciated