Gastroschisis

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
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My son was born with Gastroschisis and has had an amazing recovery, having left Addenbrookes after only 13 days and no real problems other than very slow weight gain in the initial 6 months.

He is now on the 75th centile and 14 months old.

However he has lately started suffering with really bad constipation. This morning he almost screamed the house down trying to pass a stool. he has a reasonably balanced diet, and I try to give him prunes every few days, but he is still in pain at least once a week.

Has anyone else had this problem?

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 ??

Derringer was born on Nov. 24, 2007. I found out that he had gastroschisis when I was about 5 months pregnant. When I found this out I was terrified.

I didn’t know what to do and I thought the worst was going to happen. After a couple of visits to the doctor they said that everything would be fine and that they would have to do one surgery when he was born because there was only a small amount of his bowels that were out.

After I got that news and did a some research on the condition I felt a little better. My pregnancy went great I had no pain or sickness. After the 8th month my son decided to come early. I went in the hospital thinking I was going to get a c section because that is what was discussed with the doctor and that is what she thought was best for me. Unfortunately things didn’t go as planned when I got to the hospital I was there for four days before I was fully dilated. When that moment came the doctors told me that I would be delivering naturally. I was so scared but in the end everything went well.

When my son was born I seen him for a second and then they took him off to do his surgery. Later that night the doctor told me that more bowels were out than they expected and a lot of it was dead. They ended up having to remove most of his bowels and they kept him in the hospital for a couple of weeks. They then decided they wanted to do a STEP procedure on him to lengthen what bowels he had left.

The surgery was successful and after awhile they began trying to feed him. When they did that it didn’t go so well. He began vomiting all the time. After a few more tests they told me that a part of his bowel was getting kinked up causing him to vomit a lot. It’s been 5 months now and my son is still in the hospital.

They now decided to wait on this last surgery because they believe he is going to need a transplant now. There next plan is to send him home on his TPN and wait until he is two so that he can then be evaluated for the surgery. I really don’t know what to do because at the beginning I was reassured that he would be fine and know I’m being told he is going to need a transplant. Is there anyone else who is going through this.

Hi, my name’s Annette Serge & I’m from over in the USA. My baby was born with gastro on Aug. 30, 2007. It is now March 4, and we are still in the hospital.

Kaylee just got her 4th surgery to try to close her fistula 2 weeks ago. I was wondering if anyone had any problems with fistulas????

Please contact me if you have. Email is Nettex12@aol.com. Also I would like to know if anyone’s baby’s hole was closed with their umbilical cord. Please contact me asap!

Hello, I have just found out at my 28 weeks scan that my baby  has gastroschisis…

Today october 4, 2007, i went to the hospital to have a gender identification of  my baby (ultrasound). I was so excited with my husband to know the sex, and its a girl, but we are very very very sad because we know that our baby has gastroschisis.

We are so sad and we dont know what to do.Its our first baby.And of course we love her very much.

To my fellow friends who has a experience with this problem,please help me to solve this……how?….why?….and  what i  must to do.

Is my life dangerous too? Please help me…

Thanks a lot..and i wait your response!….God bless.

Sad Mother,

chilmaya

At 12 weeks I found out my daughter had Gastroschisis. She was delivered on october 6th 2006 at Hospital of the University of PA

She was treated next door at The Childrens Hosptal of Philadelphia. Layla stayed in the NICU for 4 weeks and was discharged. Since then we have returned to the hospital three times for stomach viruses. Although Layla is very healthy today she still relies on an NG feeding tube for most of her nutrition. The doctors and speech therapist originally told me it would take about a year for Layla to be able to eat and thrive on her own.

Well here a year later and i feel that there has been very little progress. Will my daughter ever eat on her own ?

I went in for my 16 week checkup and my doctor said he saw something he didnt like but didnt know how to say in english.
Its actually the same word in German. He sent me to a specialist in Ultrasounds who confirmed it. I will have to have the c-section 4 weeks early In Wurzburg, with a doctor who speaks very little english.

I am scared any advise anyone could give would be great.

I’m 18 and 32 weeks pregnant with a baby who has gastroschisis. When I was around 12-16 weeks I was getting my ultrasound, I noticed they kept looking at this one particular spot on his stomach.
She didn’t say anything at the time, but they had me go back in the room and wait. Three doctors came in and showed me a picture of my babies stomach and I noticed a bulge coming from the abdomen. They explained to me what it was, I just went blank.

All I thought was ” What did I do wrong?”…”Is he in pain?” and etc. I researched it and found a study that Oxford journals did about gastroschisis, and I found out that it could be linked to acetametaphine (the pregnant womans tylenol) and also decongestants. I thought back when i didn’t know I was pregnant that I had taken both. Is there anyone who also took those meds?

Hi my name is Rosie and i am 29 weeks pregnant my baby girl has got Gastroschisis and i dont know what to do
Hi i am 29 weeks pregnant and i have to deliver my baby girl at st marys hospital in Manchester it ain`t that far away from home as i live in Bolton but i am really scared for my child i want the best to work out for her how did you all feel when you had your baby because i am only 15 years old

Please help, thank you