Gastroschisis

My Grandaughter was born  with  scary birth defect and lost all of her intestines but seven inches. We were told she might not live a month. But God blessed us and now she is 16 months old. She is on Tpn therapy, and she also gets Omegavin from Germany. It has not been approved by FDA here in the states yet. She can’t eat because of the lack of a stomach. She throws up a lot. But she is the happiest baby you could ever meet. Please if there is anyone else out there that knows something about  life span for this , Please contact me at iaabac1@aol.com Thank you Shelia

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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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My name is antoinette. I am 25 yrs old. I was born on Halloween day( 10-31-82) with gastroschisis. I am extremely happy that I have found this web site. I thought I was the only one born with this birth defect. I have always wanted to meet and talk to someone about this defect.

Living with this has been very tough for me being the one child born out of four kids with this abnormality. I have so many questions about this defect. Unfortunatley I wasn’t blessed with having loving parents there to educate me on gastroschisis.

I still have to live with medical problems because of the large anount of intestines lost at birth. When I was 18 yrs old I was able to become independant and thats when I started to slowly learn about this birth defect. I was hospitalized for the first 6 months of my life. I am very insecure about my body becuase of the gigantic scar across my stomach. I wish I could wear a 2 piece bathing suit and feel attractive.

Sometimes when I am dealing with my life long health problems, I feel that this is such a burden on me. In the end, I know there are blessings in disguise and I believe this is one of them. If it wasn’t for being born with gastroschisis then I know I wouldn’t be as strong as a person that I am today.

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Hi,

Me and my wife were told our baby had Gastroschisis when she was about 18 weeks pregnant. Each time we have been for a ultrasound we have been told that it is falling behind its gestational age. Is this normal for babies who have been diagnosed with this birth defect. I am extremely worried and constantly thinking about it all day. (it is currently 20days behind in growth).

Many Thanks

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When I was 5 months pregnant with my son Kiwame Michael Wilson JR, I was told by my doctor the sonogram showed my baby had Gastroschisis. I was considered to be high risk.

That means I was to be seen by the high risk patient doctor all through my pregnancy. I was going to the doctor office twice a week. My son was supposed to be born on November 17th 2007, but I guess he decided he was coming on October 10th 2007. I gave birth to a beautiful baby boy at 4:30 am.

He weighed only 3 lbs and 5.9 ounces. He was my first child. Me and my fiance were proud parents to our son. The hardest thing was to see my baby with so many tubes inside his tiny body. But I knew they were there to make him better. My son had surgery on October 19th at 3:00 pm. I was told everything went great and he would probably be home sometime in December.

On October 24th at 1:49 pm my phone rang and it was the hospital asking me and my fiance to come to the hospital. When we got there several doctors and nurses surrounded our sons bed. He didn’t look so well and his skin color was purple.

Then at 3:05 they pernounced my baby dead. I was crying and in shock all at once I couldn’t believe my son had turned 2 weeks old the same day and died. I want to know why this happened when I was told several times he was ok and nothing was wrong with him even 3 days after his surgery.

The only thing I was told is my son was not breathing to fast and hard. The doctor took us to a room in the hospital and told me and my fiance our son had a collasped lung, a infection in his blood, and pneumonia. I couldn’t believe that my baby had all these problems and just now they find this on the day he died.

I want answers to how all this happened to a baby born at 34 1/2 weeks with Gastroschisis. Nobody I had spoke to about this birth defect told me any story about their baby or a baby dying from this defect.

Nobody ever told me my baby would deal with these complications after surgery. So I want to know why all of this happened to my son who was only with us for 2 weeks and then died.

All I have left is my son ashes, pictures, and my memories of his birth, his touch, his smell, his facial expressions, his beautiful eyes, and his smile. It’s only been 3 days since he’s been gone. I don’t even have his ashes yet. But I do know I will never forget my first born Kiwame Michael Wilson JR.

I Love You and will always think about you. Goodbye my son, my baby, MY LOVE!!!!!!!!

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I was 27 years old and on my first pregnancy.  I had my first ultrasound when I was 7 weeks.  Everything looked good.  Then I had my second ultra-sound  around 22 weeks and we found out the my child had an abdominal wall defect called Gastroschisis.

Wow that was scary.  I had never even heard of that.  The Doctor that I was seeing told me that I should abort.

We were devastated.  We did not understand what was going on.  The doctor told us that if we were to continue on with this pregnancy that we were setting up our child up for death.  He would have muliple surgeries, eating problems, mental deficiencies.  I mean she made it sound like there was no hope for a recovery.  We went home and cried, told our families and basically told her for her word.  I made an appointment to see another doctor that specialized in late-term abortions.  This doctor said that there was no reason to terminate and I did not.  It was the happiest day of my life.  All I needed was a glimmer of hope.

I continued on with the first doctor just for the bi-weekly ultrasounds and she told me that my son was not growing properly, his head was too big compared to the rest of his body and we just could not take her negativity any longer.  We had  to transfer my care to the gastroschisis specialists in Westchester Medical Center which was one hour away from our home.  It was long trips and expensive gasoline bills but it was worth it in the long run.

I was due on the 4th of July 2004.  I delivered Kyler on June 15th, 2005.  I had an enduced labor and had a natural delivery.  He weighed 6 pounds and 7 ounces.  He had a full head of black hair and all his fingers and toes.  He was also perfectly perprtioned.

He was put into surgery and the doctors put all of his bowels inside on the first try.  The put him on a respirator because his body was not used to having his bowels on the inside and it put pressure on his lungs.  I have to tell you that he was feisty.  He did not like the tubes in his nose, he was constantly pulling them out.  I was happy that he was fighting to stay with us.  A more perfect sight I have never seen.  He was in the hospital for 14 days and then he came home with us.

He had severe acid reflux and he was on special formula that was pre-digested.  We had several scares with him but he has not needed another surgery and he can handle any food.  He goes to the bathroom normally and he smart, funny and so healthy.

He just turned 3 and I cannot imagine my life without my son.  Kyler is 3 feet 2.5 inches tall and weighs 41 pounds.  He is in the top 2 percentile for his age.  He is wonderful.  Most people when they see him they don’t believe that he was born with a defect and had  surgery.  His belly button looks a little different than everyone else’s but I am more than happy to see it because that means he is special.

I am a lucky lady and I have my wonderful boyfriend to thank and my family.  They were my backbone and my support system through my ordeal.  I really think that we mom’s need to surround ourselves with positive people.  We have enough to worry about without others not giving us any faith in our circumstances.

I hope that when other mothers read my story it brings them hope.  I wish you all the best of luck and continued success for all of the children being born or diagnosed with Gastroschisis.

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My son was born with gastroschisis on October 4, 2006 at 36 weeks, which is pretty normal for babies with gastroschisis.

We had found out that he would be born with this ‘defect’ around 14 weeks. We had plenty of time to do research and to prepare outselves, which I was VERY thankful for!

When he was born they immediatlly took him and wrapped up his belly so that he woudn’t get an infection. Therefore I didn’t get to see him after he was born for about an hour, that was the longest hour EVER! They then took him to Children’s Hospital to do his surgery and admit him to the NICU. His surgery went fantastic, they got all of his intestines in on the first try, so he didn’t have to have a silo, and we were very thinkful for that. After his first surgery he did very well for about 2 weeks, he was doing great with his feedings and had two bottles. THEN… he ended up getting NEC, which I’ve got to say was the most frighening thing!! He got SO, SO sick. He had a fever for about a day and nobody knew why. That day his father and I were at his bedside pretty much all day. We went home in the early evening and I went back up to see how he was doing a little later, I went to get him out of his isolete and his nurse told me not to because he was too sick (still not knowing what was wrong). So being so upset and in tears I went home to go to bed and around 11pm his nurse called us to tell us that his surgeon had been down to see him and that they would be doing surgery on him at 5 am. We go the call around 4 am to come in for his surgery. When we got there we had been told that Travis got so vad during the night that they had to give him morphine and put him on a venilater. That surgery went well, it was long because the doctor didn’t know how much of the intestines had gone bad until he got in there. Ended up that not too much was bad, thank God!!!! He had to do another surgery 2 days after that one to reattach the ends that he had cut out, and that one as well went very good!!

Travis got to go home after 71 days in the NICU. Oh yeah, he went home with an iliostomy becuase he had a colon atresha (sorry, I have no idea how to spell that). Which means that his colon was closed or just too small for anything to pass through. So at 5 months he went back for yet another surgery to reverse that. He was only in the hospital for 6 days for that one.

Now he 7-1/2 months old and doing wonderfully!!!

We couldn’t be more proud of him!!! He is so, so unbelieveably strong!!!

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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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My name is Trina Im 22 years old and I was born with gastroschisis.  I was searching for things online about different scarring that could occur from this defect and I came across this website.  I was born in 1985 and I guess they didnt have a lot of options back then being born in a small town of less than a 1000 people I had to be transported to a bigger hospital in a bigger city.
The doctors at the hospital I went to saved my life and for that I am grateful, but i was just wondering if anybody on here has very unusual scarring as i have.

They aren`t like the sacrs that most are given these days mine are severe as one plastic surgeon has told me.  I`m not sure what I can do about them now seeing as how i dont have the means to pay for plastic surgery, but i did just want to know if I was alone in this severe scarring or if anyone else had similar scars as I do.  Your help is greatly appreciated and thank you so much for the support.

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I am 20 years old and i have a one year old daughter who doesn’t have any health problems and now i am now facing having a child with this birth defect.

I am deeply saddened and i dont know what to do……..I am thinking about teminating my preganancy although I dont believe in terminations. I cant stand to see my child going through any kind of pain I am reaching out because I dont know what to do………………………

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