Gastroschisis

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 ??

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I guess I may officially be the oldest surviving gastroschisis baby on this board thus far! I’ve got you beat by one month, Kathy! I was born at Yale New Haven Hospital in Connecticut, USA in August of 1966 with gastroschisis. I was a full term baby weighing 7 lbs. 6 oz. Without the modern advances of ultrasound, my mother had no idea that I would be born with this birth defect. She was 22 and I was her first child. I was in ICU for about 4 weeks. At that time, mothers were not allowed any contact with their newborns in neonatal ICU, and I recall her telling me how heartsick she was that she was not able to hold me or take me home.

It was traumatic as a little girl and young teenager having no belly button (I also had nothing covering my umbilical area, so I have a 3″ scar in the middle of my abdomen), but I soon got to like educating people who thought it was impossible not to have a belly button! By the time I was in my late teens, I had no problem wearing a bikini on the beach and no longer felt self conscious about my scar. The only thing I find annoying now is that some of the skin at the top of the scar puckers out (my surgeon’s poor attempt to “create” something that resembled a belly button) and rubs on my clothing.

In putting my internal organs back inside my abdomen, the surgeons removed my appendix, but other than that, as far as I know everything is normal internally. I had a completely normal childhood physically, though I did and do tend to have problems with bad gas pains from time to time (don’t know if that is related to the gastroschisis or not).

Since I adopted both my children, I do not know if there are any effects on my fertility due to the gastroschisis. I never tried to get pregnant, so I have no reason to believe that I am infertile. Everything else seems to be working correctly in that department.

My 3 year old is at that stage where every person she draws has a belly button. I always know which pictures are of me! In fact, two weeks ago she informed her entire preschool class that her mommy did not have a belly button and her teacher argued with her that that couldn’t be true! When I came to pick my daughter up, the teacher said, “You would not believe what your daughter told us today. She says you have no belly button.” Boy, was she shocked when I told her that my little one was telling the truth! I usually get a “how can that be?” response. I tell people, “a belly button is not a vital organ!” People don’t seem to understand that you can be born with an umbilical cord but still not end up with a belly button!

So, as Kathy says, for all the moms out there worried about their babies with gastroschisis, please take heart in the fact that there are those of us who survived without any of the modern conviences of the 21st century and many of us are trudging into middle age leading perfectly healthy lives!

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