What is Gastroschisis Exactly? – Gastroschisis
What is Gastroschisis may well be the first question to enter your mind on hearing it for the first time. This guide aims to answer those questions.
“Gastroschisis is a condition where your baby develops a defect (hole) in the abdominal wall during development, while still inside your womb. This is usually to the right side of the umbilical cord and some of the bowel escapes through this hole and continues to develop outside your baby’s abdomen. This happens in approximately 1:7000 births. There is an increased chance that your baby will be born premature and small. The number of cases of babies born with Gastroschisis has increased dramatically in the Western world over the past decade. The cause of this is not known”.
Source: http://www.bsuh.nhs.uk (Gastroschisis Factsheet)
What is Gastroschisis exactly?
The following gastroschisis videos will give you a good idea of what to expect, although they refer to tretment at the UCSF in the USA they do give a good indication of similar treatments and advice that may be offered by your health practitioners.
The views and opinions expressed in these videos belong to the orginal authors and do not necessarily represent those of gastroschisis.co.uk, if in any doubts please seek advice from those that are looking after you.
During Pregnancy
Delivery of your Baby
After the Birth
Gastroschisis Theory
What is known through current research is that the defect predominantly occurs on the right hand side of the umbilical cord, without the protection of a sac the intestines are exposed to an increased amount of amniotic fluid, this in turn prevents the development of our baby causing the Gastroschisis.
Through current study it is known that the Gastroschisis condition has very few other complications and is considered a sporadic condition which rarely repeats in other pregnancies which seems to eliminate a genetic condition.
Treatment
The Treatment and care of your Babies Gastroschisis is carefully planned after referral to a specialist consultant, who will answer all parents questions and concerns related to the condition. Operation to repair the defect occurs immediately after birth followed by admittance to a special baby care unit for close monitoring.
Questions
New parents of the condition have questions that need answering, fortunately there are Gastroschisis forums and support groups that are currently available to provide the answers.
If you are to be a new parent with a child born with Gastroschisis, you will already have been referred to a consultant with sole expertise in the care and treatment for you and your baby, any links from this website to another about the condition are provided either by recognised medical bodies or as useful sources by registered members.
You have probably arrived on this website with a million questions as to how and why this condition is effecting you and your baby, right now there is no solid proof that Gastroschisis is caused by any one single factor, the condition is reportedly more predominant in mothers in their teens to early twenties, current speculation has linked Gastroschisis to drug abuse and smoking, this is currently not a conclusion. Genetics has also been another, but again the days of research into the condition are still young.
The easiest way to find answers is to read through the stories we have within the website that have been submitted by our members. If you still can not find what you are looking for why not add it to the site. (registration required)
Has anyone noticed that the majority of Gastroschisis cases are found to be females? Im a scientist and a gastroschisis survivor. I have asked a toxicological friend of mine to look into some things about Gastroschisis. I read up online about the 9 children in Kent and a possible link to pesticides. However the possible explainations that are found online puzzle my case. My mother was not exposed to smoking, pesticides, herbicides, promiscuity or any genetic link. Does anyone else have any input into this?
Enjoy the Olympics folks … X Irish (S)
Never really researched the split between male/female but an interesting point. I would also like to see more research conducted into fathers as well as mothers.
I remember asking at the time if they wanted a sample strand of my hair at the time but was dismissed with a simple ‘no’.
Obviously the research at the time was a concentration on mothers and funding constraints into research (I’m guessing) may have been the cause of that.
Some of the earlier cases that I have heard of (early 1960′s) were females and most of the stories submitted here are again by mothers, but that may be more to do with mothers/survivors seeking answers more openly than us men do in my opinion.
Hi Dean, so sorry for my late reply. I’ve been away and had little wi-fi coverage. I think their dismissive attitude is because the medical professionals know so little about gastroschisis that they just say ‘no’ instead of offering a test. Funny actually, unrelatedly, I was at my doctors recently and asked her about some natural remedies and asked why doctors tend not to recommend them. She laughed and said that doctors know little about natural remedies and dont like to look like they dont know something so they just ignore it, lol. Maybe its the same with gastroschisis. Look up gastroschisis on wikipedia and you will see the diagram that I was talking about. I agree with you Dean that unfortunatly men tend not to seek answers and merely just live with the issue. Shame really as it would be great to hear more from guys as it might help us see a proper ratio of males:females with gastroschisis. Thanks again for your great site. : ) Irish
http://upload.wikimedia.org/wikipedia/commons/thumb/3/3e/Autorecessive.svg/220px-Autorecessive.svg.png Thats the diagram Dean.
Think I have come across that image before but not on Wikimedia, thanks for that. I was also looking to have something similar for the home page here along with stats by country (which will take some digging) although it won’toffer much in the way of reassurances it will help those researching the condition a little more insight.
My b-day was July 30th, i just turned 38. I was born with gastrocthesis. I was born @24WEEKS, i weight nearly 3lbs. I was rushed to the childrens hospital in LA at the time. I lived there for a few months. My scar looked like railroad track. After having my second child, my dr minimized it. i still have a scar from the top of my abdomen to the bottom and one on top that sinks in on my left side. It was thought i counldn’t have children, when i was pregnant we were thrilled. I was unable to give birth naturally because of the scar tissue in my stomach from being born. I had to have a emergancy C-section, my son was turn around and cought, like in a spider web. My second son was an automatic C-section. The only problems later in life is i’m lactose intalerant and reciently now if i drink soda it hurts my stomach af anyone and i cant hold anything in my system for the reat of the day. it’s wierd. If anyone wants to talk plz let me know, i’ve never meet anyone else like me. I am called alien becuz i dont have a belly button. ty tanya
Hi Tanya, your by no means an alien. Ppl are just ill-informed and scared of anything that is different. I was born with gastroschisis in 1985, (I’m 27). My scar is like a barometer shape. I have no belly button just a round shape at the bottom and elongated to the mid section of my stomach. I am hoping to start a family in the next few years but I’ll be honest, I am nervous about how this will impact my scar. But kids are worth it. I’m sorry to hear that you developed lactose-intolerance. I know that I will probably have to have C – sections. In 1985 there was only 1 neo-natal scan offered to mothers and they were not very detailed scans. Gastroschisis is seen at around 14 weeks. Scans in Ireland were only offered up until 12 weeks so my condition was not known to my parents. Nice to meet ya : )
Hi Dean, Im waiting on my contact in the toxicological field to get back to me. She is very busy so Im being patient. My co worker took some info off me and took this to her so Im hoping to have some light shed into gastroschisis. I know that its estimated that 1,871 children are born with gastroschisis each year in the United States. According to The Irish Independant newspaper more than 1 in 50 babies in the UK is born with it. But Im not sure of the accuracy of that figure.
A link for you:
http://www.ncbi.nlm.nih.gov/pubmed/17701414
I read that 20,000 babies in Ireland were born in 2011 with gastroschisis. Again sources cant be verified.
If I can do anything to help with statistics let me know. : )
It was my birthday yesterday, i was 14. i was born with gastrochisis and now suffer from short bowel syndrome. i died twice and had about 8 operations. i get called an alien too as i have no belly button and a 20cm scar up the middle of my stomach. i hate getting changed for PE at school because im different from all the other kids, and being in year 9, all the kids find it hilarious to laugh. its good to know there are others that feel the same
My son Alex was born in 2007 with gastroschisis and immediately after birth we were told he was never going to survive,he had his first op at 5hrs and went onto have another 10 ops on his bowel including 2 STEP procedures to lengthen his bowel as a lot had to be cut away leaving him with short bowel syndrome. He is 6 in june and is still totally TPN dependant through a hickman line and has a gastrostomy for bolus feeds as he has a phobia of all food and has never eaten a thing in his life. He spent his first 11 months in hospital and suffered liver failure at 7 months,he was assessed at birmingham childrens hospital for a small bowel and liver transplant but thankfully his liver regenerated itself and he was taken from the transplant list. Alex has developmental delays due to his long stays in hospital and has poor mobility,needing a wheelchair for long distances,against all odds he is plodding along nicely at the minute and attends mainstream school where he is well loved by all he does get line infections often though that always land us in hospital for short stays which he doesnt enjoy now hes getting older….my worst fear is him feeling different or being bullied as he too has a large scar both horizontally and vertically across the full length of his stomach and does not have a belly button,its been a long road and he still fights to this day has anybody else been as bad as Alex and actually came through it to lead a “normal” life?? i would love to hear from anybody fancying a chat my email address is hayleyljackson@hotmail.com…x
I am nearly 21 years of age and I was born with the condition too. I died several times and spent my first 6 months in hospital. I also swollowed muconium which stuck to my lungs. I am covered in scars from blood transfusions and have a terrible needle phobia. I have a 10cm scar going down my stomach which I like to call my battle scar. I was bullied at school, but if kids are going to pick on you, they dont need a reason to do so.The only problems my scar has caused me is as I have grown up, the stitched stomach muscles pull and it feels like really bad cramp, other than that I have no problems. Babies born in this day and age hve almost no scarring with many having a belly button put in. Just goes to show how medicine has developed over the years!
my baby girl was stillborn 11 years ago and she had gastroschisis. i never got a reason why she didn’t make it but was told it had nothing to do with her condition.
hi, my baby was born ten years ago, with gastroschisis. Sadly he didnt make it, he was born at 8 months and he didnt get surgery until 15 hrs after he was born…died about 4 hours after surgery. sad to say its a bit more difficult when you live in places where you cant get the proper care and when you cant find what causes things like that to happen……..
I just had my daughter on the 11th of this month and she has Gastroschesis….things aren’t looking to good for her…she is already a week old and they have only done 1 operation and they don’t know if they can do anymore!?!?!? This is my 2nd child and she was the planned one…am I supposed to feel this guilty about her condition; especially if she passes away from it??? It looks like not very many high hopes???
Aw KT, I hope everything has gone well with your daughter. I too gave birth to a son with Gastroschesis and he is now almost 28 years old. They managed to put all of his intestines back in in one surgery though it took a while to work. He has to watch what he eats, too much junk food means diarrhea for him. They made his scar like a drawstring purse so his scar swirls around. He loved it, all the girls in school wanted to see the boy without the bellybutton. He has many other smaller scars from IV’s and a Broviac catheter for feeding. He was born a month early weighing 4 lbs. My son stayed on the smaller side but has developed into a normal healthy young man.
Unlike most of you, I have only known of boys with this condition. My son met a young man with it and my cousin’s grandson was born with it with more complications than my son.