Gastroschisis(gas.tros.chi.sis) Support and Resources

Baby Lilly decided to arrive by emergency c-section on 11th June @ 4.23am weighing 5lb 12oz. 

She is absolutely gorgeous!! 

They whisked her away as soon as she came out, I got a little peek before she left.  I got to see her a few hours after her operation and she had a silo pouch and looked extremely swollen and puffy which they said was from the drugs to paralyse her.  Everyday she looked so much better.  She has been given a long line and is still on morphine etc.  But she was taken off the ventilator today, although she will be back on it Friday when they do the closure operation.

She’s a little fighter and a little squaker at the moment!!  I feel like i’ve known this little girl for ages and it’s not even a week.

It is jusy so worrying.  Not knowing what to expect and not being able to help in any way. 

The first time I left hospital for a few hours to go back home I cried all day coz I didn’t want to leave her on her own.  The nurses here are brilliant and I know she is in the best hands.

I am now staying in accomodation at the hospital but will be going home on the weekend which I am dreading coz I know I will be so upset.  We will be coming up every day to see her but I just hate leaving her.

Did you all feel the same?

Our granddaughter was born at 37 weeks (induced) on July 22, 2008 with her liver outside of her body along with the gastroschisis.  She also has a cleft lip and palate.  She weighed 4 lbs 15 ozs and is 17 3/4 inches long.  I have read the post on here and am encouraged about the gastroschisis.

My question is, does anyone know of anyone born with the liver outside of the body also.  This really concerns us.  The doctors told us they handled it as delicately and as little as possible.  They placed it along with the gastroschisis in the silo.  I guess it is a wait and see game at this point and I know it has only been a couple of days since she has been born, but I was trying to get any information I could.  Please help if you have in any information I would appreciate it.

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