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

I had a scan yesterday (i’m currently 34 weeeks) and they said that the bowel was dilated inside and out.  She said this is common as the room is getting tight in there.  Is this right?  I also had a date to get induced at 38 weeks.  I just cannot wait for his worry to be over and for little one to get on the road to recovery.

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.

I’m typing this as my 13 week old daughter naps beside me.  I found out at my 21 week scan that my baby had a gastroschsis.  I am Irish and my husband is Scottish, but we both live in Toronto, Canada.  Before the delivery, we met with a high risk obstetrician, a neonatal specialist and the chief of general surgery at Sick Kids and they all explained what we could expect once our baby was born.  I went for regular ultrasounds as the obstetrician could see that her bowels were becoming more and more dilated.  At 36 weeks she had to come out as the risk of prematurity was less that the risk of the damage being done to her bowels.

I was induced and she was born at 11.58am on June 5th.  She was whisked away to the NICU where her bowels were wrapped in saline to be protected from drying out.  Waiting for the doctors to come and tell us she was stable was the longest hour of our lives.  She had to be intubated at 30 minutes of life.  She was 4lbs 9oz.  The transport team from Sick Kids came to take her in the early hours of the morning, but wheeled her isolette to my bedside so we could see her.  It was heartbreaking to see her and to leave her.

The very next morning we called Sick Kids.  The nurse told us we should have named her fiesty as she did not like being bugged.  I’m glad she had such fight in her.  It turns out she had her bowel, stomach, right falopian tube and right ovary ‘out’.  We were also told at that time that the reason the bowel was becoming dilated in utereo was because she had an atresia (blockage).  They put her bowels in a silo and we were told that once they pushed the bowel back inside and operated to close the defect, we would have to wait 6 weeks before they could operate to remove the blockage.  Only then could they start feeding her.

After 6 days she had surgery.  I was able to hold her for the first time just prior to her surgery.  That is a moment I will never forget.  The surgery was a success.  Slowly she was weaned off morphine and extubated.  I noticed that she kept stooling and when I told surgery, they said they it must not have been a blockage, perhaps it was a narrowing, so they sent her for a contrast study (they place contrast in her stomach and watch via x-ray until it goes through her system).  It made it all the way through – proving there was no blockage.  We were so relieved she wouldn’t have to have the second surgery.  She was started on continuous feeds and a bowel motility agent.

The weeks that followed were long and stressful with many ups and downs.  Iona (we named her after an Island between Ireland and Scotland), kept having ’spells’ where her heart rate would drop and her oxygen levels would de-saturate and we couldn’t figure out why.  She had almost every test in the hospital and were able to rule out what was not causing it, but we never found out what did.  Luckily she grew out of them (after 9 weeks).  She also kept having mysterious ‘infections’, but they were never able to find a true infection…she only showed signs and symptoms.  She really was a mystery baby that kept all the staff on their toes.  We were so nervous the first time she fed by bottle, but she did amazing.  However, she had a feeding study that showed she would silently aspirate into her lungs – meaning that she didn’t have a protective cough to clear her airway.  Maybe that was what caused her spells?  It was a long process of feeding, rejecting feeds and then having to go back on TPN.  I dreaded each time that happened as I had researched how TPN can damage the liver.  When she was finally up to full feeds by bottle (she was drinking my breast milk thickened with a product called SimplyThick), she stopped thriving and went for 2 weeks without gaining weight.  It turned out that Simply Thick was running through her system before her body had a chance to absorb anything.  We switched her to formula thickened with rice cereal and she has been steadily gaining weight since.

She was finally discharged at 11 weeks and has reached the 8lb mark.  She is so alert and has great head control and is as active as any normal healthy baby.  With the exception of some reflux and us having to give her injections for a couple more weeks (for a blood clot she developed in the NICU – a complication that sometimes arises from having a PICC line), she us doing amazing.

She has been through so much…we all have, but hopefully, we can all put it behind us.

PS her scar is minimal

Hi there,

My name is Nicole and Im 22 years old. I was born in 1986 with Gastroschisis, the defect was unknown to my parents or there physcians untill I was born. I had kinda a ruff childhood with being sick alot but not alot related to gastric functions untill about the age of 17, about then is when I started having problems with digestion,pain, bloating,constipation, all these really awefull, painfull, and uncomfortable things.  I felt like it would take my gut days and days to process anything properly, and that it was never doing a good job of it.   Soooo I saw a couple of physcians about my concerns and obtained the medical records and operative report from the day I was born as sort of a guide to what really “went down” on the day.  Come to find out that I had a defect with the stomach, pancreas, duodenum, colon, and the small and large bowel, all outside the abdominal cavity.  I gave this information to my physcian and they did some tests like a barium swollow to make sure the malroation of the bowel had been corected properly and there were no other internal concerns. the study showed that everything did indeed work “satifactory” was the word they used, but that it just took forever. They did say they belived there were some fair amount of abdominal adheasions that could be causing all these types of symptoms to come and go, and recomended plastic surgery to revise the scar and to take a look at the adheasions.  So I had that done when I was 18 and I felt a little relief after the surgery but not much. So now I’m 22 and still dont feel just right, I believe Ive done what I can and wonder if there is anyone else out there like me who has experienced these same types of issues with this defect later on in there life.  I feel strange not knowing whats going on inside of me it dosent feel like I think it should, and Im sick of being obbsessed about it !?!? I do watch what I eat and excersize regularly but nothing seems to help, ive seen at least 5 doctors  and they tell me that everything should be fine.. but it dosent feel fine !!

Is there anyone out there like me ??

My son was born with gastroschisis 6 days ago. The nurses at the hospital say that he is doing really well. He has started having bowel sounds and he had a bowel movement sometime yesterday. Leaving him in the hospital was the hardest thing I think Ive ever done. I just wanted to sit around and cry. It hurt to leave him, but I know that he is getting taken good care of.

I was just wondering how long any of you had to wait until your baby was able to leave the hospital and come home.