Gastroschisis

My little girl was born July 24, 2008 and she had gastroschisis. Now she is four months and still in the hospital and I am worried to death. The funny thing is she was showing so much progress they started back feeding her and everything. All I want is for her to come home its killing me. My little girl will be four months and will have to have her third surgery on Friday November 14, 2008. I am worried becuase they have to taper her intestines and the surgent says it can be dangerous. I want to know if anyone had their babies with gastroschisis interstines tapered cause if so i want to know the result of what happened. Please send me a message if you have any information about tapering and Please Pray for my baby girl she is so bubbly and beautiful.

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Hello! My name is Jackie and i wrote an entry awhile back. It contained a picture of my husband who is a marine and me next to him. We were expecting a baby girl on Oct. 26,08. She came early on Sept. 28. The doctors thought a part of her intestines were swollen and didnt want the rest of her intestines following the same suit so i was induced Sept. 26 and she came 2 days later. I delivered vaginal and the delivery was very successful. My daughter weighed 4lbs 11ounces and was 17 inches long.

I was able to see her a couple hours later and her intestines were in a silo. 7 days later all of her intestines were back inside of her tummy. She did have a bit of jaundice and it went away quickly. She had a tube going down her tummy to remove bile and she had a tube to give her oxygen. She had no problem breathing on her own but they wanted to keep it in just incase. She was receiving TPN and they monitored if she was pooping and peeing right. She didn’t poop for quite some time which is normal because it takes awhile for the intestines to wake up and start to push the poop down. After awhile she was given breast milk slowly.. and they checked to see if she was having bowel movements. Once she did they would feed her more and increase the cc’s she would take in. She started to poop more and was slowly taken off the machines. I was told she did very well for a gastro baby and were surprised at how quickly she recovered.

My daughter was in the hospital for a month and she was able to come home Oct. 24,08. I’m so happy she’s home and we’re able to be with her. Her belly looks wonderful and her wound is shrinking and healing nicely. She’s slowly gaining weight and is doing great. I’m so glad everything went well. [:

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My sister had her first baby Aug 1. He was born with gastroschisis and finally got to go home Oct 1. He had a blood clot while in the hospital but it went away, he caught respiratory MRSA while on a ventilator which they decided not to treat, and they put him on rantidine, ursodol, iron, and vitamins which he is still currently on.

Tuesday he started having really black stools, dr thought it was due to the iron supplement so they lowered his dose and sent him bavk home. Now it’s Saturday, his stool is still black and now my sister is bringing him in because the blood clot looks like it came back.

Do you guys have any experience with the iron/stool or the blood clots…maybe what treatment worked best?

i’m going to share this site with my sister, but if any mommies with gastroschisis want to email her with  info or encouragement - my sister’s name is Alli and her email address is (well she has two, but i think she uses the first one tho) -

snoewhyte13@hotmail.com and miztalkalot@hotmail.com

thanks for any info you have! <3

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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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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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“A long journey, many bumps, many problems.. it was a long wait, but totally worth it..”

I’m seventeen years old and just less than a week after my 17th birthday I found out I was pregnant, on December 13th, 2007. I was surprised. Shocked mostly. The hardest part was telling my parents and everyone else. I was scared for my life because I didn’t know what I would do and I didn’t know how to take care of a child, even a baby. But I didn’t think anything else would be worse than be pregnant at 17 and I also didn’t think there would be anything more harder than telling my parents about it. But, on March 2nd, 2008 I found out at my Ultrasound that there was something wrong with my baby. They found “abnormalities” in my blood, a lot of TPN. They told me that there was either a problem with the baby, I was having twins, or I lost her. When we had the Ultrasound, that’s when we found out. My baby had Gastroschisis. We saw her little intestines out floating by her belly button.. I was scared, and unsure about what I was just told. I was confused, upset, mad and frustrated.. Everything started going downhill from there. Just a month before I found this out, me and my boyfriend broke up. Too many problems in the relationship, he wasn’t ready and he decided it was best for him to leave me. I was left with nothing but hoping for this baby to come out strong.. she was the only thing that was keeping me going, staying in school and keeping a part-time job on the side.

After being 6 months pregnant, my boyfriend and I finally started working things out and slowly got used to me being pregnant and prepared ourselves for this baby to come. On July 18, I was called to come in to be induced. I was sent home after a few hours and started getting contractions, but they stopped. Then on July 21, I was called to come back to get induced again, but no contractions and was sent home again. Finally, on July 23, I was called to get induced for sure. I had really harsh contractions and stayed the night in the hospital but they stopped around 2 the next morning. On July 24, they decided to put an IV in my arm to make the contractions come faster. About 4-5 hours passed and the contractions started to come, not so bad. But when from 6-8:40 the contractions got too much for me that I had to take Epidural for the pain and was fine for the next few hours. On the morning of July 25, I started to feel the contractions and the pressure. From the 23rd to 25th, I dilated from 1 to 2 to 3 to 5 to 6-7 then to 9. By 6 in the morning I couldn’t take it anymore and the doctor told me it was almost time and to let her know when I needed to push. I kept complaining that it hurt and the contractions were getting worse, and they realized that it wasn’t the contractions but it was actually her coming already.

Then it happened. 37 weeks, 6 days, July 25th, 2008, 7:50AM, 6 lbs. 13 oz. A baby girl was born. I saw her for a second and then she was sent to the next room to cover her bowel and intestines. An hour later I was able to see her before they brought her to the NICU. She didn’t need any breathing tubes, she was breathing all on her own. All I saw was the top of her head and part of her face, and one of her eyes open. I got to touch her head, but I didn’t get to see her look at me or kiss her face. I was still too weak to move and I was lying on a bed right above her head. The surgeons told us they weren’t sure how long it would take to put back her bowel and intestines, it would either take one surgery or two. Then she was sent to the NICU.

Around 7PM that same day, my boyfriend and I went to see her. We didn’t think they finished her surgery because they said they would do it later that night. But when we saw her, she had no intestines out, nothing. They told us that one surgery was a success and it was all inside her. What a relief! She was just resting and recovering.

On July 26, we went to see her again before I finally left the hospital. She was really swollen and looked in so much pain. She had a needle in her head, on her arm, her leg, so many wires.. It was so painful to watch and I couldn’t stand watching. They were telling us how it all depended on her recovery and it was all up to her to stay strong and fight while they helped with more fluids and everything else..

Today, July 27, we went to see her again. And this time, she looked so much better! The needle in her head was gone, the swelling went down to minimum and they slowly took away some fluids. They said she was doing better and she’s doing good. I finally got to touch her for the second time, this time I got to feel her head, her cheeks, her arms, legs, feet, tummy, everything. I saw her eyes open, and then one of them opened just looking at me. I knew she was fighting to open her eyes after being so swollen, and she finally did for a short amount of time to look at me and her dad.

Honestly, this baby is a blessing, a miracle. They fight so hard and stay so strong just to stay here with us. I was worried for over 4 months about her Gastroschisis, but after only 2 days, I’m so relieved that she’s so strong. The doctors and surgeons these days are amazing. I just know everything is going to be fine, and things will always be fine when you pray and have faith.

“It was ALL worth it, and we’re going to stay strong.. just like her.”

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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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My never ending web research into Gastroschisis has thrown up some interesting discoveries recently.  For example the first known case of Gastroschisis was reportedly in 1733.

“Before children’s hospitals were conceived, Calder, in 1733 reported from Glasgow two neonates⁶: one with gastroschisis, a malformation that has become more common in the last 30 years; and the other an infant with an unusual duodenal duplication.”

Source

Unfortunately the citation does not divulge too much information other then that which i have quoted.

The first known survival from the condition was in 1878.

“one of the first reported survivals of an infant with gastroschisis was published by William Fear of England in 1878″

Source

The early processes of treating Gastroschisis.

“Since the introduction of a preformed silo to the authors’ practice in 1997, there has been a decrease in primary closure of gastroschisis. To clarify the impact of this change, the authors reviewed their results over the past 10 years”

Source

These are my latest findings (although some of the articles are dated) i will post more as i find them.   There seems to be an unending question right now in my mind, often there is research into links with the mother, everything from over the counter drugs to lifestyle, but what about the dads?  A question arose.

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Hello, I thought i would join this website as i wondered if there were other people registered on here with the condition……. I was reading some of the other posts saying how people have found out in advance about their baby having the condition and how worried they are about how they will live a normal life or the size they will grow to.

I am just letting people know there is nothing to worry about as i was born with no warning to my parents that i had gastroschisis, as technology wasnt quite as good in 1983/1984 as it is now and the doctors assumed that i was a just a boy not that i had any medical condition. I was born 3 months prem and weighed 5lbs droping to 1.5lbs after one week. Not to worry though as this is sometimes normal.

I spent 3.5 months in hospital and had an amzing surgeon he pionnerd the surgery that they use today with babies that are born with the condition. I have lived a normal life i am happy and healthy i am now 5ft 9inc and weigh a normal weight and have never had anything hold me back. My parents decided for me not to have plastic surgery to cover my scars and decided it was my desicion. I chose not to have the op and think that my scars are part of me and who i am.

I hope i haven`t bored you and hope that i have settled any fears over small babies and people not leading a normal life when you are born with gastorschisis.

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Hi

I’m 20 weeks pregnant and my baby has gastroschisis. I’m currently living in Suffolk and go to Adanbrookes for specialist tests and monitoring. For a while I’ve been hoping to re-locate to Cornwall, and am now in a position to do so in the near future. I was wondering if anyone knows if there are any specialist units in the south-west, or what the general practice is for mothers living in this area?

Thanks in advance for any help!

Sarah

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