I was a gastrochisis baby

All I can say is wow! I never knew so many people suffered from this I was born in September 1966 full term 2 lbs 8 ozs. what they called it at the time a severe gastric hernia. I spent 2 months in in prenatal intensive care had my heart stopped 3 times and still made it.

Well I’m 41 have 2 beautiful kids now 20 and 11 and my case I didn’t have any covering (skin) over my umbilical area so I never had the normal belly button just a crater and yes it was hard to deal with as a child but I had a great supportive grandmother.

Any way when I had my son in 1997 I found out that my small intestines were sewn to my abdominal wall which I was never to have leiposcopic surgery . which was fine because it would perforate my intestines and I would die. O k I could remember that. And told my care giver in the future.

Well, about a month ago I had severe pain in my right lower side thinking I’m having an appendicitis. well surprise it wasn’t . I had 3 small bowl obstructions due to scare tissue . And well also found out that my appendix wasn’t even in the right spot. matter of fact my whole small and large intestines were not text book laid out. that explains a lot of bad gas pains as a child.

Well back then you didn’t have specialist for every thing my mother told me and they didn’t use mesh and such like they do now. and when I was developing in the womb my intestines grew out not up like normal.

So it’s a 100% mortality rate for obstructed bowl after 36 hours I’m starting to feel like a cat with 9 live here. but now every thing is fine and more battle scars to add to my collection. but it could happen again any time. I was told.

By the way, there were 3 cases that was reported at the same time that year, I was the worst case. The environmental people did investigate and asked my mom a whole bunch of questions, all of course were not the cause. so. to those mom’s out there yes your children will be fine just delicate little fighters. and will live a normal life.

Kathy

  • Kathy, i am so glad that you have added your story, it has answered a lot of fears and anxieties a lot of parents may have been having. I for one was curious about the oldest Gastroschisis survivor and what complications they may have endured. I can well imagine the lack of knowledge back in the sixties could have meant a different kind of outcome but, like all Gastro babies you are yet 1 more miracle.

    It`s great to hear that you have two kids of your own now and thanks for putting Ashleighs mind at rest over her fertility worries.

    I have searched hard all over the net through medical records to find out when the first case of the condition had been recorded, but alas i could only go back as far as 1982, so your story here has more meaning to the direction of this website than you may ever have realised before you registered, you have been a great help thank you Kathy.

  • i am very excited to read your story! i was born with gastroschisis in 1983. i have never met another person with this. reading your story really made me feel not so alone. i’ve never been ashamed of the huge scar on my stomach, but it definately has made for some interesting conversation. and i rarely wear a bikini! it seems like there have been many improvements made now compared to when i was born. i wonder how much it was improved upon in the years between our births? i was born in tennessee and no one here seems to know anything about it. it’s great to hear that you have been able to have children and haven’t had many problems out of it. i have so far been afriad of having children. thanks for your story, it has been an inspiration to me!

  • Hi Kathy,
    I just read your story and I feel as though I was reading my own biography!! I was born Dec 31, 1966 in Phila, PA,USA. I had the open abdomen and malrotation of Small Bowel. They also called it Hernia. I developed Ganggrene after several surgeries as a new born. That New Years Eve the Northeast was in the grip of a major snow storm. I was born in a small suburban hospital. The hospital could not handle complication so they wisked me away in ambulance through snow to St. Christopher’s in Phila, Pa. My poor mother was drugged asleep and stayed in hospital where I was born. How did I even survive that night. Anyway I did, and went on to a normal childhood.

    I also had a very funky belly, no belly button, Very tramatic for a teenager!! When I was 12 I had more reconstructive surgery. Shortly after this I suffered from a small bowel obstruction due to surgical adhesions. Since then I have had several episodes of the obstructions and live with a very slow digestive system. I just spent a week in hospital with my last SB obstruction. These are very painful, as you know.

    With each episode getting worse it has been difficult to find a surgeon that will take my case and help me. Anyway this last episode led me to a surgeon who thinks he can help. 41 years of scar tissue our insides must be a sight to be seen!!

    I too, have two beautiful daughters,13 and 11. I tried for a third but had ectopic pregnancies due to adhesions. So, I feel lucky to have my two daughters.

    Besides a scarred up belly, I live a very normal life. Life at any given moment hangs in such a balance!!

    I also had a brother who died of Leukemia when I was 5, he was 4. So, I often wonder if there was something environmental going on. I haven’t dug to deep into that yet.

    Are you under a doctors care? What kind and is he or she a specialist? Any info we could share would be great. Where were you born?
    Laureen

  • I am so glad to hear that you have 2 children. I just found out that because of my scar tissue I will need some help getting pregnant. Did you have any troubles getting pregnant? Sorry to hear about the abstructions you are having. I always wondered if Gastroschisis would cause any problems with my intestines later in life.

  • I was a gastrochisis baby
    Monday, May 19th, 2008 | Author: krickit

    All I can say is wow! I never knew so many people suffered from this I was born in September 1966 full term 2 lbs 8 ozs. what they called it at the time a severe gastric hernia. I spent 2 months in in prenatal intensive care had my heart stopped 3 times and still made it.

    Well I’m 41 have 2 beautiful kids now 20 and 11 and my case I didn’t have any covering (skin) over my umbilical area so I never had the normal belly button just a crater and yes it was hard to deal with as a child but I had a great supportive grandmother.

    Any way when I had my son in 1997 I found out that my small intestines were sewn to my abdominal wall which I was never to have leiposcopic surgery . which was fine because it would perforate my intestines and I would die. O k I could remember that. And told my care giver in the future.

    Well, about a month ago I had severe pain in my right lower side thinking I’m having an appendicitis. well surprise it wasn’t . I had 3 small bowl obstructions due to scare tissue . And well also found out that my appendix wasn’t even in the right spot. matter of fact my whole small and large intestines were not text book laid out. that explains a lot of bad gas pains as a child.

    Well back then you didn’t have specialist for every thing my mother told me and they didn’t use mesh and such like they do now. and when I was developing in the womb my intestines grew out not up like normal.

    So it’s a 100% mortality rate for obstructed bowl after 36 hours I’m starting to feel like a cat with 9 live here. but now every thing is fine and more battle scars to add to my collection. but it could happen again any time. I was told.

    By the way, there were 3 cases that was reported at the same time that year, I was the worst case. The environmental people did investigate and asked my mom a whole bunch of questions, all of course were not the cause. so. to those mom’s out there yes your children will be fine just delicate little fighters. and will live a normal life.I posted my story in may 2008,
    and to answer some of your questions, I’ve always was food sensitive but I had a healthy appetite
    like I love spaghetti but it don’t like me. I have a hard time processing fats, and It’s gotten worse as I gotten older. I now have a slow working gall bladder. working at 40% but my surgeon doesn’t want to do any thing until it’s really bothering me because of my past history, the more you muck around in the the more scare tissue you develop. his name is Dr. William Carney.So I try to behave my self. this biggest thing I miss is ice cream I love it but can’t eat it. and other dairy items. and I was never lactate intolerant. I guess till now. the funny thing I’m very much over weight for my height, of 5’1″ but I guess stomach by pass surgery is out HA HA .and to all you new mom’s and mom’s to be things will get better, oh ya I’m going to be a grand ma in august to a baby girl Skylee Marie. well best wished to all .Kathy

  • Hi All
    I have discovered very recently that I also had this. Born July 1965 – am I the oldest?
    I knew I didn’t have a belly button but I was told that I JUST had an infantile hernia at birth – wish they could have fixed it growing up I felt weird and would hide my tummy at all costs. Regret never wearing a bikini – the shape of my tummy is also odd.
    My story, I have had gall bladders problem and this was removed three weeks ago by keyhole surgery here in Cambridge. When i saw my consultant I told him the “family” story of my birth – that the stomach contents where on the outside and the bag was spilt – I don’t think he believed me and they did a records search and indeed found this to be the case. What is even more remarkable was that I was born in a rural hospital and had to undertake a 2hour ambulance drive to London before I could have surgery.All of my bowel, appendix and left fallopian tube were exposed. I spent only three weeks in hospital and although I didn’t grow very fast and I was a fussy eater as a child – I have more than made up for it as an adult and am also overweight to my shame.
    I have three children, 16,12 and 11 – I think I was more uncomfortable than most whilst pregnant and the stretch scar was real sore point. After moving various times – my birth records were buried and I was just put down to ibs and perhaps adhesions when I went to see the doctor for stomach pains – so I was lucky in a way as they never made any fuss and I just got on with it. I too have to avoid things like excess meat and pastries, as I get crippling stomach pains and can hardly walk.

    I not sure that I am out of the woods yet, They did unfortunately get into the scar tissue when they operated and that is still uncomfortable. But being without my gallbladder is much better – now that is real pain.

    All credit to the doctors who operated back in the sixties and my surgeon now who delivered on his promise to try and do it keyhole if at all possible.

    • Hello to all… I am a 57 year old male(born May 31, 1956 in Windsor, Ontario CA)and just found out that what I have is Gastroschisis. Believe it or not I have been told I was born with all my insides outside and that that was a result of trauma to my mother during pregnancy. I heard gastroschisis muttered by doctors over the years but never thought much of it as I attributed my abdominal deformation to trauma. I was also told that I was in the Canadian medical history books as the first survivor of this type of defect at birth. I never paid much attention to that either, but as one poster noted – it made for interesting conversation.

      My scars are hugh and take up the majority of my stomach. I have no belly button and after reading these posts believe the abdominal surguries over the years were most likely a result of this birth defect.

      For all this time I thought I was alone, as you don’t talk about things like this outside the family and when you believe the defect is a result of abusive relationships you don’t even bring it up in the family.

      So imagine my utter joy to know after 57 years that a. I am not alone (but I am sorry for those that are with me). b. That this was not necessarily a result of trauma but just a random act of nature.

      If the stories are true – that I am the oldest survivor of this (and I don’t know that they are) I want all to know I have lived a rich and prosperous life. My BIRTH DEFECT has not stopped me from doing anything. I played hockey, football (my coach made me a special pad to cover my abodomen where I had no muscle), baseball, soccer and lacrosse. I served in the USMC for 4 years, worked in a steel mill, flew airplanes and graduated from University as an Electrical Engineer. But my greatest accomplishments include being married to my best friend and having 3 healthy children. So for young Mothers and Fathers, even with the most rudamentry care one with this birth defect can live a full life.

  • iya, i’ve been readin through all these stories about you’se having gastrochisis an i just wanted to say that i was born with the condition aswell, i was born in august 1996 an i was in alder hey for 10months with the condition an i had about 16 ops untill my bowels went back in. I am now 13 years old an i have a big scar across my belly an i have no belly button i find it rather embarrassin if people ask if i have an innie or an outtie because i have neither :/ ..an i hate to tell people i have no belly button. But hopefully when i am 18 i will be able to have plastic surgery to have a belly button an to cover up my scars :) ..
    writeback xx

    • Hi my name is gwen. i was born July 6th 1989 and i was a severe case of gastroschisis, a part of my bowel was actually dead when i was born. they dont know how i survived. i dont have a belly button either. :) i know it seems scary and weird…i am sure you feel like a freak, i did when i was your age up until i was in highschool. but you know what? its cool! you are unique! and you know how many bets you could win? how many people would believe you if you told them you didnt have a belly button? when they say “i dont believe you!!” say “wanna bet 20 bucks?” and when they do. BAM! 20 bucks. hahaha.. just kidding. but it does make you unique! so dont be worried. although keep getting checked out every few years to check your scar tissue out…i havent been andi think i might be in some trouble now. so dont make my mistake. keep yourself healthy. :)

  • I was born in 1972 with gastrochisis. I am now 38 am am starting to have complications. I recently had to have my gall baldder removed and surprise…things were not where they should have been. My 45 min surgery doubled in time. The surgeon told me there was a lot of scar tissue, and I am having a rough time healing. I am trying to find out what I can expect for the future. I have many adhesions and lots of scar tissue. I have always had bowel trouble and weight issues. (don’t know if that has anything to do with the gastrochisis).
    After six years of trying, I was able to give birth to two beautiful children (three year apart), but was told a c-section was out of the question. For several years now I have been having “girl” trouble, and would love to just get a hysterectomy and get it over with, but no one will touch me. What to do???

  • my daughter was born with gastrochisis in 1980. Back then ultrasounds were not done so she was born naturally.   A large white cone shaped bag was over her opening, containing her intestines and after a week to 10 days her opening was sewn closed. After 3 weeks in The now Brenner Childrens Hospital in Winston Salem, NC, she came home.  Another surgery for parloic stenosis? after a week being home, but after that she had no major problems. She did have constipation and large stools growing up. She has had lots of pain when she ovulates. I always wondered if she would be able to carry a child, and she gave birth to a boy 4 years ago. The bad pain and ovairan cysts continued, as well as indemetreosis , so she had a hysterectomy two years ago.  While the doc was in there, he said one of her  ovaires had adhered to her uterus and was elongated, and some of her intestine had adhered to her scar. He fixed that and removed her uterus but left her ovaires. She still had terrible pain and constipation. She takes birth control pills to help with the pain during ovation.
    I wonder if there are specialist that specialize in these problems??

  • I was born in June of 1965 in Atlanta Georgia and am also a survivor of Gastroschisis. My surgeon (Dr. Gerald T. Zwiren) was, at the time, a pioneer in the field of treatment of Gastroschisis. I have had over 15 major surgeries over the first 15 years of my life, but I am 47, have three children, and have had basically a normal life with very few limitations due to this. I never had a belly button either, but it never bothered me. I am having some back problems that my doctor believes is related to the strange musculature, but time and doctors will figure all that out. It is great to find some other survivors who are closer to my own age. Love to correspond if you are interested. email me at morrisross258@yahoo.com.

  • I am a gastroschisis survivor, born in 1972 at a US hospital, Up until a year ago I didn’t even know what my surgery was called. Like most gastroschisis survivors I was told growing up that I was born with my intestines on the outside…and that was that, it was almost like it was an ugly secret that wasn’t talked about much…so I thought as I got older. In adulthood I came to discover that my parents were both very young when they married & had me a year later. Being so young they didn’t know what questions to ask about my surgery & I guess they were just happy that I survived. Like many women who had gastroschisis, I too had to had surgery at the age of 13…which seems to be a running theme that when we hit puberty/menstruation our conditions seem to manifest and worsen. I complained of chronic abdominal pain for over a year before after seeing multiple doctors they finally decided to do “exploratory” surgery. They found multiple ovarian cysts on both ovaries (they wanted to do a hysterectomy, but mother refused her consent), scar tissue/adhesions, & yes I too had multiple internal organs that weren’t where they should have been…including my appendix on the opposite side of where it should have been, appendix was removed along with portions of intestines that they believed were too scared & twisted to repair, & an “attempt” at scar revision for aesthetic purposes. After I was sent home I received only one follow-up visit & told if I got worse to see my general doctor & that the surgery went well & I would be fine….except for the fact that I might have trouble conceiving. Looking back I wish I had been old enough to dig deeper into the reasons why. At the age of 40 I have never been able to get pregnant…even seeing multiple doc’s for fertility work, ALL of which downplayed any effect that my prior surgeries could play in my infertility.
    Now at 40 my health is worse than ever. I finally found a doctor who acknowledges the negative reprocusions gastroschisis can have on a person later in life. I had fibroids & cysts, suspected scar tissue & fibromyalgia. Currently my doctor wants to do surgery, but after ultrasounds he’s worried that my intestines aren’t where they should & grown to the scar site (where my belly button would be…my scar runs the length of my stomache) so he’s nervous that surgery would puncture my bowels & I could die. So that’s my story & I am thankful to find other survivors & know that all these things I’m experiencing are not unique to me…God Bless & thanks for ur blog, I’m real glad I found it.

  • I was born June 1984 at Pennsylvania Hospital in Philadelphia. I was delivered by C-section four weeks premature, but I was a “healthy” 6 lb 10 oz little girl. Minutes after I was delivered I was transferred to CHOP. I had one surgery to correct the condition. I spent 6 weeks in the hospital and made great progress. I was released from the hospital with a feeding tube which remained for an additional two months. I have a 5 inch zipper scar down the length of my abdomen, a one inch horizontal feeding tube scar, a scar on my chest were I had an “A” line and scars on my wrists, ankles and forearms from IV lines. My mother tells me that I would cry and cry and cry as an infant undoubtedly from stomach pain and discomfort.

    I developed normally as a child. I had no difficulties with my bowels or stomach. I was always self-conscious about my scars. I was ashamed that I was different from other children. Changing in the gym locker room was always a big deal to me and I would take great pains to hide my stomach. Today, I am not bothered by my scars. Doctors have suggested plastic surgery, but I am not vain enough to have it done.

    As a teenager I started to have problems with my stomach. I was not able to eat full portions of food. If I did I would experience a severe pulling sensation at my feeding tube site. The feeding tube scar would concave inward toward my abdomen and it would be red and inflamed. I would be doubled over in pain until my food digested. One thanksgiving when I was 21 I really over indulged. I ended up tearing a scar tissue adhesion. I had severe pain, fever and was unable to eat for several days. My GI doctor did an upper GI endoscopy (All of my GI tests reveaedl slow digestion and bowels in atomically incorrect locations) and he made an additional scar tissue tear. I now have chronic heartburn. I have taken prescription heartburn medication for 7 years now. I have been told there is nothing that can be done to repair the damage. However, in a twist of fate, I now can eat normal sized meals but if I over eat I still have the same problem.

    At 22 I began to experience problems with my reproductive system. I experience stabbing pelvic pain, abnormal bleeding, fevers and UTIs. Lifting, pushing or pulling anything heavy will trigger flare-ups. CAT scan, ultrasound and MRI tests were all done and revealed large ovarian cysts, blocked and fluid filled fallopian tubes and internal bleeding. I will never conceive a child naturally. I have struggled with grief from the infertility and have gone through bouts of extreme sadness and anxiety. God has been gracious to be and has given me a loving and supportive husband who has helped me cope with the infertility. We are just starting the IVF process and hope we will be able to conceive with help. I have concerns about the scar tissue pulling and tearing during pregnancy but I have to try.

    It has been wonderful reading this blog. Today was the first time I have ever heard other people’s gastrochisis stories. It is encouraging to know that I am not alone and I am not the only one struggling with physical conditions as a result. I feel that there is a real lack of knowledge in the medical community about the long-term complications of gastrochesis. I do know that God has a plan for my life and is orchestrating all of my medical problems for his glory and sovereign plan.

  • My name is Gwen, I was born in MO in 1989. My condition was a rare one, a part of my intestines were actually dead and they arent sure how i survived but i did. I was in the hospital for the first year of my life clinging to life sometimes, full of life others. I didnt have any problems with it afterwards till i was 21. After already given birth to a child years before, i had to have a tube put in my throat to pump my stomach clean so my loop of scar tissue i had on my intestines would unwrap itsself from the top of my stomach. i am worried i am having more problems again and i want to know what i should expect….should i get checked out? i never went back but once while i was a child to check up on my scar tissue or anything. have i made a mistake? i have already had two children, the second of which was a c-section.

  • I was born in Everett, WA in July 1977 with Gastroschisis. I was transferred to Childrens Hospital Seattle by ambulance within hours. From what I understand, I had some small intestine tissue death & had some removed. Then everything was put back inside, I guess they didn’t use the silos back then to put everything back in slowly. I was in the hospital until Christmas, what a great gift for my parents! At 6 I returned to Childrens for hernia surgery, where they also gave me some semblance of a belly button! I have been told that when the doctor asked me what color I wanted, I said brown lol! I have a year old son who is the light of my life! And while I did have issues due to back issues also attributed to the Gastroschisis, I was otherwise ok throughout the pregnancy. I have always had stomach issues(constipation, gas, indigestion, etc…), but until recently have not thought it was abnormal from anyone else. This past August I ended up going into the ER with very bad abdomenal pain & bloating. I have had similar episodes that resolved themselves(one after eating oranges when pregnant), but nothing to this extent. It turned out I had a full bowel obstruction! I was in the hospital for a week on IV fluids & not much else, the obstruction seemed to resolve. When CT scans were done at the ER it was shown that I have malrotation – my large intestine is folded over itself on top of my small intestine & all of it is crammed in on my right side! I have been on a pretty much bland diet since & continue to have digestive complaints. My GI doctor doesn’t think the malrotation is the cause of any of my problems; but, then says he doesn’t know enough about it & wants to speak with a surgeon! I would just like to feel normal, or at least eat & lie without constant pain & discomfort! Any other survivors have similar issues? And did you get a resolution?

  • My name is Elyse and I am 25, I was born in 1987 with Gastroschisis. I was always told that I would never have kids and have stomach problems all through life. My husband and I have been trying to have a baby for almost 4 years now and nothing seems to happen. I have been told to go see a fertility specialist but have not. I was doing some research on other females with Gastroschisis and read that alot of them could not have kids or they would have to go through the IVF process. I have also read that alot of the women had a dead or crushed fallopian tube do to having there organs put back in there stomachs as baby’s.
    I have always had stomach pains since I was a child and recently had to go to the ER becuase the pain was unbearable. I told them I was born with Gastroschisis and they did a CT scan and found out that I have a Malrotation. I later had an appointment and did other scans and test and was told that my intestines are not in the right place. That they do not lay across my spin that they lay to the right of it and instead of the intestines forming a C mine forms a S. They also said that my cecum is located in my upper part of my stomach when it is suppost to be in the lower part of my stomach. They also said I probably have an intestinal hernia as well and they also said that they are worried about my scar which is from side to side on my stomach because the tissue seperating my organs is to thin where my scar is. They said I need to have surgery because a Malrotation could turn into an Obstruction and was told that if it obstructs that you could die. So I have an appointment on the 8th with a surgeon to discuss what there going to do and when. I am in the Army and stationed at Ft.Wainwright,AK but they would have to fly me to Seattle Washington because they can not help me here. I hope my information helped :)

    • I have some updates. Now the doc told me that they can not do anything for my malrotation but they are going to do surgery on the 14 Jan 2013 for adhesions on my small bowl . He sai he thinks I have a small bowl obstruction so he said by removing all the adhesions might help. I have also seen a fertility doc and she will also be at my surgery to see if there is any adhesions on my Fallopian tubes. I’m kinda nervese so let’s see what happens because he said adhesions might come back due to having surgery and if there is holes on my bowl from the adhesins that he is going to have to reconstructe it! Crossing fingers that doesn’t happen!!!

  • Hey, My name is Charlene Khayyam I was born on August 30, 1977 with gastrochosis. I had surgery shortly after I was born in Columbus, Ga. I always felt like I would never find have kids or find anyone that would want me with the scar going from one side of my stomach to the other. I always had problems using the bathroom but as I got older I have been having trouble with my back and having shortness of breath. I am going to a pulmonlogist now to see why I am having trouble breathing and now she is thinking that maybe something could have happened doing my surgery. When I eat a little or a lot I feel full only on the leftside where I have scar from a tube that I had in my stomach. I was blessed to beable to have a daughter who is almost 5 years old and have been married for 6 years. I was wondering if anyone else may be have difficulty breathing.

  • Hi …I was so alone for years never found a Dr that knew of the birth defect,never knew anyone with the condition,or what it was called. I was told they put my organs in in silk sack of sorts.I never had a belly button ,just a large deformed stomach,caved in 6 inches long.I had my first child born 6 pounds in labor for 45 minutes.He was ok.
    I then had a baby girl at 7 months along and she was 4 pounds,then again I had a girl 6 pounds after being in the hospital for 8 weeks ,them giving me trablutaline to stop labor everyday,and a amniocentesis to see if she could survive on her own,had to wait for 2 more weeks so her lungs where developed.They took me off the labor stopping meds and she was born ,with a hole in her heart.She did live ,both girls have low immune systems.!st born is now 40 and the girls are 36,and 33.They all have children of there own.Meanwhile I am 58 and have had pain almost everyday on right side,feels as if some one has a hold of my liver and twisting it.I feel the best when I eat nothing.(liquids are easier on the tummy) .I have no idea what my future will hold but I try to keep positive as I can.I think at this age I have made it ,sure would like to live longer to watch my grandchildren grow.Seems there are no Drs/ for older adults with this birth defect.
    God Bless you all! vikinieland@hotmail.com

  • Hey all, I was born with Gastroschisis in 1987, was the first case of it in Watford General Hospital, UK. They was on the phone to London’s children’s hospital while operating on me as they had never seen this before. As a child growing up with this it was hard but you learn to deal with it. Since I’ve got older, I seem to be experiencing some abdominal pain. For the past few years I haven’t been able to put any pressure on my stomach, I can’t lay on my stomach or eve rest my arm on it. This has concerned me but was unsure if it was related to the Gastroschisis. Has anyone had this before?

  • I meant to post this to all but posted it to only one comment. So if you don’t mind I will post again.

    Hello to all… I am a 57 year old male(born May 31, 1956 in Windsor, Ontario CA)and just found out that what I have is Gastroschisis. Believe it or not I have been told I was born with all my insides outside and that that was a result of trauma to my mother during pregnancy. I heard gastroschisis muttered by doctors over the years but never thought much of it as I attributed my abdominal deformation to trauma. I was also told that I was in the Canadian medical history books as the first survivor of this type of defect at birth. I never paid much attention to that either, but as one poster noted – it made for interesting conversation.

    My scars are hugh and take up the majority of my stomach. I have no belly button and after reading these posts believe surguries over the years were most likely as a result of this birth defect.

    For all this time I thought I was alone, as you don’t talk about things like this outside the family and when you believe the defect is a result of abusive relationships you don’t even bring it up in the family.

    So imagine my utter joy to know after 57 years that a. I am not alone (but I am sorry for those that are with me). b. That this was not necessarily a result of trauma but just a random act of nature.

    If the stories are true – that I am the oldest survivor of this (and I don’t know that they are) I want all to know I have lived a rich and prosperous life. My BIRTH DEFECT has not stopped me from doing anything. I played hockey, football (my coach made me a special pad to cover my abodomen where I had no muscle), baseball, soccer and lacrosse. I served in the USMC for 4 years, worked in a steel mill, flew airplanes and graduated from University as an Electrical Engineer. But my greatest accomplishments include being married to my best friend and having 3 healthy children. So for young Mothers and Fathers, even with the most rudamentry care one with this birth defect can live a full life.