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 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

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………………………