Gastroschisis

My daughter found out she was with baby at a bad time. But decided to keep going and have it. At 18 weeks she had a ultrasound and her doc found problems. We live in a small town so we were asking to see another doc. Two days later (we don’t know what it is) she has another ultrasound and that’s when they tell us about gastroschisis. It’s amazing that a word like that you learn how to say and spell it real quick. So now this doc make a appointment with a children’s hospital that is 3 hours away from us to have more test.

At the hospital they took all their test and gave her the results and wanting her to let them know if she is going to keep the baby or not. She was smaller that is was suppost to be. Looked like there was problems with the brain and her feet looked wrong. It was like a bomb hit us. I could see my daughters heart braking right in front of me. How do you help someone when they have to decided something like this. And it didn’t help that one of many doctors that saw her say she should end it. Well, my daughter decided she was going all the way no matter what was wrong.

mind you she is only 19 years old. The next couple of weeks went by before a MRI could be done to check on how the brain was. When they were do, my grand baby had everything she needed upstairs(her brain) but they did tell here at that time her fluid was very low. So we were always solving one problem but gaining another. My daughter had so much stress on here but trying not to let it get to her for the sake on the baby. So now we are at 28 weeks. The doctors want her to go to 38 weeks. She has a ultrasound every week and her fluid is going back up. We keep waiting for the next bomb but it hasn’t come yet.

We have read everything we can on gastroschisis and that is how we found this web site. It has help reading from everyone here.

Thanks for your time helping other. I have learned to never give up!!!!!

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My daughter was born on 23th july 2008 with gastrochisis and was doing well .But now they say she is not doing aswell as they expected her to do at this stage ,they are now saying that she will need a dye put in to she if there is a blockage as she is’nt takin the amount of milk as they would like her to and have now put her back on TPN and lowered her milk to 8ml every hour as she keeps being sick at  times after feeds. has anyone went throu the same process as were going throu….

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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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Hi Everyone,

My wife and I have been reading this website for sometime. Whether we were looking for answers or empathy we have found this place to be an extraordinary service. We have an unborn daughter with Gastroschisis who is scheduled to be induced in August. I’ve decided after a considerable amount of thought to post our experiences online via a blog. I’m a novice, so please forgive me for any lack of technological know-how. I hope to share our experiences in order to help the community of all those who are affected by this birth defect. Please visit it at:

http://babyonboard-dh.blogspot.com/

I hope to make an entry every day until induction as well as detailing our experience after her birth in the NICU. I welcome you all.

Thank you,

Devlin & Ashley

The latest posts from Emma`s blog;

[feedsnap]http://babyonboard-dh.blogspot.com/feeds/posts/default?alt=rss[/feedsnap]

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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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Greetings,

I am currently 25 weeks pregnant and have found the information and posts on this site very informative and helpful. I am happy that this site exists and my thanks go to those who created and maintain this invaluable resource.

At a recent ultrasound measurements were taken of my daughter and I was very worried to learn that she was only in the 3rd percentile for her gestational age. The doctors indicated that they would perform another ultrasound in three weeks to measure our daughter’s growth. They said that if, at that time, she is still under the 10th percentile, the term Fetal Growth Restriction would be applied to this pregnancy and they would begin twice weekly ultrasound monitoring. I was wondering whether any other parents of babies with gastroschisis have had a similar experience? Also, what is the typical birth weight for a baby with this condition?

At this same visit, we were given the opportunity to visit the NICU (neonatal intensive care unit) in order to see where our daughter would be cared for. We also met with the pediatric surgeon. While we were grateful for the opportunity, it was very difficult for us to imagine our daughter stuck in a hospital with tubes and wires everywhere. I wonder if anyone who has already gone through this experience can offer advice on how to deal with this very difficult situation? Also, we have a 17 month old daughter at home and we are both very concerned about how to manage spreading our time between the hospital and still maintaining a sense of normalcy for our oldest daughter.

We appreciate any suggestions you might have.

Warmest Regards,

Ashley & Devlin

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hi, i have a little girl called Ebony leigh, she was born with gastroschisis. after she was born they put a silo on around her bowels for a week then she had her operation which was a succsess. My daughter is now seven weeks old and still in SCBU.

She just wont tolerate her milk and is only on 1ml every 2 hours and her TPN to keep her nutrients up. It just seems every one who i have read about or spoke to with babies that have the same condition have only been in a few weeks. Its really fustrating i just feel like im missing out on her. I was just wondering if anyone else felt the same way it would be really good to hear a reply
X

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I recently wrote a piece on my daughter, stephanie, who was born in june 1996.

She had Gastroschisis and was born at 38 weeks. She had her operation and treatment at Lewisham hospital in London.

I have noticed a few new parents on this website who are having a bad time with their news of diagnosis and treatment.

Please keep positive, it’s hard, I know. Gastroschisis isn’t as rare as it used to be 10-15 years ago and the treatment has vastly improved since then. Medicine is improving and the chances of survival rates with Gastroschisis babies are rising.

I’m sending with this post….a huge hug to you all.

Sherry Sleney x x x

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I have a daughter who is going to be 12 in june 2008. she was born with gastroschisis. i found out she had the condition at my 16 week scan. i was nearly 17 years old and single. she was born in Lewisham hospital and had surgery to fix the problem straight after birth.

i saw her for the first time aged 8 hours old. she was fed orally for the first time aged 2 weeks and she came home aged 4 weeks. she is a happy and healthy girl who i still look at in amazement every day.

She doesn`t have a normal belly button but is aware of her birth and why she has a different tummy button. i want you all to know…those of you who are expecting a baby with gastroschisis or have recently given birth…that its not always a dark tunnel. it will be a long and difficult journey but keep positive and enjoy your special, brave child who you are blessed to have.

i am happy to email anyone personally. email me at sleney@hotmail.co.uk

sherry sleney

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My daughter was born with gastroschisis on 4th Nov 2007 by emergency c section at 37+1 weeks due to reduced foetal movements and a possible twist in the bowel. Luckily Ella was born with uncomplicated gastroschisis and there was no twist in the bowel.

Ella had surgery 9 hours after birth and after only around 35 hours on a ventilator, 5 days in SCBU and 9 days on the ward, Ella came home.

She spent a total of 15 days in hospital and since coming home has had no problems since! She is a very good baby and has been sleeping through since 9 weeks!

I know we were very lucky with our experience and I wish everyone the best. Feel free to contact me at emersonbrown@tiscali.co.uk for any advice or to chat.

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