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?

Our daughter was born on 12th january at 38 weeks, vaginal delivery and making a grand entrance in approx 6-8 minutes. She weighed 5lb 8oz. She is 6 days old today and had her operation 3 days ago. She is now off of the morphine and only has paracetomol as and when needed. She is opening her bowels and all appears to be working fine, they hope to introduce her to milk tomorrow. We had our first cuddles today and she is great.

Hi, hopefully this will give hope and a positive outlook to anyone who is expecting a baby with Gastroschisis.

When my husband and I where told we where expecting a baby with Gastroschisis (2008), our world fell apart. We thought we where going to have a child with a permanent illness, who would not be able to digest food properly and never be a “normal” child. We couldn’t of been further away from the truth.

Throughout my pregnancy I was told I wouldn’t make it past 32 weeks (Gastroschisis pregnancies never normally go full term). I was offered a termination twice at our local hospital. I now feel angry and wonder why this was the case since understanding what the condition is and seeing how perfectly normal my daughter is today. I was scanned every 2 weeks at my local hospital, where they checked my baby’s size and my amniotic fluid levels. I was then referred to Kings College Hospital London, where I was again scanned every 2 weeks and was finally induced at 38 weeks. Our daughter was born 12 hours after being induced and weighted a tiny 4lb (Don’t worry not all Gastroschisis babies are this small). I had a normal delivery.

Here’s a quick summary of our experience so you know what to expect:

Our baby was taken immediately after birth, her bowel was firstly wrapped to her in cling film and by the time we got to see her (3hrs later) her bowel had been put into a silo and she was in an incubator. Over the next week her bowel was gradually eased back (a little bit each day) until the 4th day when all of the bowel was back in and she was ready for her operation. During this time she unfortunately caught an infection and the operation was delayed for a few days. Her operation was finally carried out 7 days after birth.

Following her operation she was fed TPN (Total Parental Nutrition) for a week and everyday they drew back the green bile levels in her stomach through a tube in her nose which also fed down into her stomach. When her bile levels dropped the hospital started her on my expressed breast milk. She sampled her first bit of breast milk (also through a tube via her nose to her stomach) 1 week after her bowel had been closed (2 weeks after birth).

We finally got to hold her when she was 2 weeks old….and I will never forgot that first cuddle. She was in an incubator for 2 weeks and then in a hospital cot bed for another 3 weeks where I was also able to breast feed. Her nose tube was removed and after 5 weeks we finally got to take her home. By the time she was discharged she was breast feeding and just like any other baby.

There where a lot of ups and downs and upsetting moments during her time in intensive care, but you have to remain strong and positive. You have your good days and your bad days.

I thank the hospital staff and surgeon every day, as her operation was performed through her bellybutton. She doesn’t really have a scar. They kinda reconstructed a belly button for her, which looks like a larger than normal, flat, slightly mis-shapped belly button. We are really pleased with the result, as we were worried she was going to have a scar across her stomach. It doesn’t look like a normal belly button (as its totally flat, with no indentation), however considering how the baby is born and everything they go through, it looks petty good. I know not all hospital do it this way.

Our daughter is now 5 months old and so far everything seems to be going well. We haven’t had any set backs so far and we have just started introducing her to other foods (banana and baby rice) as well as her milk. We had a check up last week and where told she has a slight hernia, however its nothing that needs addressing now and hopefully never will.

If you have just been told that your baby has Gastroschisis or are due to deliver any day, the most reassuring thing I can tell you is that your baby is just as “normal” as any other child. Your baby will not look any different or behave in any other way. He/she will breath, smile, love and laugh like any other child.

There of course can be complications and every case is different. There can be extreme cases of this condition and you should ensure your hospital offers you as many scans as possible to monitor your baby’s condition and the bowel.

During our 5 weeks at Kings hospital there was another 5 babies all with the same condition in ICU (Intensive Care unit). As parents we all discussed our experiances and it soon became apparent that every babies recovery time with Gastroschisis varied. This ranged from 4 weeks to 3 months. We where told by the hospital that only 4 babies over the past 10 years (in there care) had died from this condition. The overall success rate is extremely high.

Good luck and remember every baby is a special gift from god and gastroschisis babies are no exception.

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.