Gastroschisis

Hello all,

My name is Tracy and it is nice to see a supportive site such as this for gastroschisis. I was born on May 20, 1978 with this unfortunate issue. I am now 30 years old and very healthy! I wanted to write to let all of those parents out there know that your child can live a healthy life. I have a beautiful daughter that was born with no problems at all. Chloe is healthy and there was no sign of any issues during pregnancy or at birth.

Because my gastro was so long ago, I have a large 1 inch deep scar that runs from my breast-bone to my pelvis. The scar has always been a sort of medal for me and although babies today will have a belly button and very little scaring…still be supportive. My parents were wonderful at letting me know that I was unique and that was special. I remember as a young girl showing my friends my “cool” difference.

God bless all of the parents going through this now. Your babies are beautiful and it takes special people to deal with an issue like Gastroschisis. However, your babies can live full lives! The only issues I’ve had are blockages a couple of times in my life. I was 14 the first time a blockage snuck upon me and 26 the second.

I hope I haven’t bothered all of you with the fact that I’ve told my life story…but I know how worried I was thinking my child would have this. I can’t imagine how scared the parents of babies with this abnormality are. I’m sure every parent is scared for their future and the here and now. Feel free to ask any questions! I am very open about it.

Have a blessed week!

Tracy

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I was born in 1984.  My parents had no idea that there was anything wrong with me until I was born.  The doctor just looked at me because he had no idea what to do.  Until now as an adult I have not had any problems.  My husband and I have been trying to have a baby for over a year now.  We went to a fertility doctor and last week we found out that we would need to have IVF to get pregnant.

The doctor discovered that because of my Gastroschisis at birth I have too much scar tissue in abdomen.  My uterus is pushed to one side, one fallopian tube is blocked and the other is squished.  I am wondering if anyone else has had fertility troubles as an adult because of Gastroschisis?

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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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I was born with gastoschisis , which has left me with no belly button and a massive scar , i was born prematurly (2lb) and very nearly died ! i am 17 and no different from anybody else now apart from various scars all over my body . I was just wondering if this condition would have affected my fertility ?? I was told that one of my ovaries were damaged ?? Can anybody else help me ??

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I had no problems until just lately I started having servere stomach pains and I noticed that my belly felt like I had a ton of gas and the dr had me go get a ct scan and found out I had a incarsarated hernia and an upper intestine blockage! Stemming from my birth defect! I had this done last year!

Yikes now it can get scary with this kind of birth defect since Dr’s don’t know what they are going to get into until they cut me open! And with all the scar tissue and not knowing if all the body parts are in the right area, very nerve wrecking!

Luckly my Dr’s at the Universary of Iowa Hospitals did such a wonderful job on me when i was a baby all my stuff is in the places or there about! When I was a baby they put a mesh in me that the dr built up my stomach walls and I remember that when I was little I was preached about not getting hit in the belly area or I would Die! I had no stomache muscles to protect my inners.

Well I hope I helped a little I am now 35 years old and doing well! I am married to a wonderful man who dosen’t mind the scar at all and loves me for who I am !
Danyel

P.S. If anyone has this birth defect please email me maybe we can chat! I would love to meet sum people that I can relate to with this Birth Defect!
coolhippychic@aol.com
Let me know it’s about this subject or it may end up in trash! TY

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Hi, my name is Amber. I went through gastroschisis when I was a baby!

I am 14 now, and my life is wonderful!!!  I used to be made fun of when I went swimming, because of the scar on my stomach; I always wore one peices, but now all i wear is 2 peices. You get over it, and now I don’t care what people think about me ! My mom always told me that, “it doesn’t matter if people make fun of me, You’ll always have a story to tell !”

For all of the women having a baby with gastroschisis, and for all the kids that have had it, I am praying for you, and I know God will take care of you !!!

Love:  Amber

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My name is Kylie and I’m eighteen years old. I thought you’d be interested in hearing my story so you can learn about possible long term issues with gastroschisis.

My parents married young and my mom had me when she was nineteen. Since I was born in 1989, most pregnancies didn’t have ultrasounds done unless they were high risk ones, so my mother didn’t have one through out the pregnancy.

I was born a month early and was a natural birth so when I was born and my stomach was open with my insides coming out, I was rushed immediately to a children’s hospital. My mom only go to see me for a few seconds and didn’t even get to hold me. I was flown to the hospital and immediately went into a small surgery to secure my vitals. The organs that protruded were wrapped in gauze on top of my stomach and I had a small surgery every day for almost a month. They shaved what little hair I had and fed me through tubes in my head and my leg. The doctors told my mom that my surgeries were so difficult that it was like putting toothpaste back into a tube. I’m lucky though because my doctor ended up successfully separating conjoined twins later on.

I finally got to go home when I was almost a month old. I was born very small but gained a few pounds in the hospital. They thought there might have been damage to one of my ovaries but they can’t be sure. If so, I’ll have a narrower chance of having children. My scar on my stomach is vertical and is now six to eight inches long so I technically am known as the girl with no bellybutton. I also have three to four inch scars on my right leg from where I was fed through tubes.

Ultimately, I’ve grown to be a very happy, healthy girl. I’m a freshman in college and I’m living my life each day at a time. However, for the past five or so years, my stomach scar has had pains and the doctors just believe I have built up scar tissue and it wouldn’t be good to have to operate in the exact same spot as before. But other than the scar tissue, there’s nothing really wrong with me other than typical issues teenagers have.

My parents call me their miracle baby and I thank God every day still that I’m alive. To all you parents who have recently found that their baby will have gastroschisis or to the parents who have babies recovering, I’m a success story you can smile upon. I hope your children will grow to be as normal and healthy as I have.

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Hi i originally posted this on http://www.geeps.co.uk but id thought id post it on here as well.

Umm where do i start, i was born in 1986 with Gastroschisis which wasn’t picked up by scans, anyway to cut a long story short im now 21.

Something I have found recently is Fantastic support for parents that have children born with gastroschisis (well done you guys) but meeting people that are now 20+ that were born with gastroschisis seems increasingly difficult. This is probably due to the fact the internet was at an early stage of its life and the outlet for people to discuss such matters wasn’t there.

My Scar is about 11cms long and i must say looks fairy impressive , I have been offered plastic surgery but I wouldn’t change it for the world!

I have a ball of scar tissue on the left hand side of my scar with is about the size of my fist, If i get abit of a gut on me I have been told that the scar tissue will stick out and cause some problems , none which im worried about as I plan to stay in shape but it would have to be removed if that ever happened.

I have also had severe stomach cramps with has had me in a ball on the floor in tears, not fun but recently they have disappeared after around 4 years and a change of diet,, now I have to battle off the hayfever GRRRRR
I lead a very active life, I play rugby and I rock climb a fair bit too, so I can say that been born with gastroschisis hasn’t had a large affect on my life.

It would be great to hear from other people that have gastroschisis to see what experiences they have had, and what dumb questions doctors ask like

‘ So how long have you had gastroschisis for? ‘

I was born at The North Staffs hospital via Caesarian Section , from what ive been told there was an Egyptian doctor there at the time who was willing to leave me for dead, as he hadent a clue what was wrong with me ! , anyway the nurses complained, and i was taken to Birminingham Childrens Hospital to be patched up.

My parents were concerend as im sure anybody would be , i was filled full of feeding tubes and still have the odd scar knocking about ,one on my neck and one just above my right nipple , and one on my left arm , weird things ops , id say the scar is around 30 stiches.

Most Doctors are retards , yes they do a fantasic job but good god i wonder if i know more about stuff than they do !. I know that the nurses at Birmingham Childrens Hospital took photos of me for some medical text book or for some other medical purpose , maybe i should give them a bell and see if i can get my hands on them, thats if they still exist

Hope to hear from someone soon you can email me at spydermonster@hotmail.com

P.S Chicks dig scars

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