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

Hi my name is Maria, I am 20 years old.  I first found out that my baby had Gastroschisis when I was about 15 weeks pregnant through my first sonogram.  I was devastated because I had never heard of anything of its nature and I was like how am I going to go home and say this to my mother.  My boyfriend and I were told by the doctor that this was something that was reparable and could be fixed but that if would could not handle it we were free to have an abortion.  My boyfriend immediately told me no.  It is my first baby first pregnancy and I was not about to have an abortion the baby was almost 4 months. When I was about 5 months pregnant they had told me my baby was a boy. We later came to find out that she was a girl.  Through my whole pregnancy I had a Doctor check me regularly the visits started to become more and more regular to make sure everything else was in and nothing was dragged out along with the intestines.  My doctor told me that she would be there with me throughout the whole pregnancy.  Towards the end I found out she would be the one to deliver my baby which made me feel much more confident and calm.  On Saturday, September 19, 2009 I began to have contractions but they were far apart.  I had called my doctor and told her and we joked around and she told me that if the baby would be born that to try and aim for before Sunday morning, I guess the baby heard her and took her advice.  On Sunday, September 20, 2009 I had contractions at about 10 mins apart.  I was anxious and I couldn’t sleep which was not normal being that throughout my whole pregnancy I did not have problems sleeping. Something that was rare and something in me just kept telling me to get up which finally I did.  When I did I called my doctor she told me to get there and when I got there I had lost all my fluids.  I had to have an emergency cesarean.  My daughter was born at 9:36 she weight 5’5 and 17’1/2 long.  As soon as I heard her cry I started to cry. I got to see her for just a couple of seconds and they quickly took her away to take care of her.  They took her away and place her intestines in the silo to protect her intestines.  The surgeon then told me that her intestines looked good and nothing had to be cut or anything like that.  The first couple of days in the N.I.C.U were tough because I wanted to hold her and I just wanted to take her home.  She got her 2^nd operation to put all the intestines in on September 25^th 2009 and the operation was about two hours long which made me worry but the surgeon then told me that the operation was a success.  Now we are just waiting for them to start feeds and hopefully she will be home soon.  Her intestines have began to function she has had two small bowel movements but they count .

We discovered that our precious little girl and Gastochisis on our 12week scan, and as like most of you spent the next few months constantly worrying about what lied ahead for us. We were closely monitered by monthly scans, followed by weekly as our due date approached.

Millie decided to make a early arrival and was born 5 weeks early weighing in at 5lbs 9oz and she was then whisked away to SCBU as soon as she was born, it just didnt feel real whilst I was still in the delivery room, our little angel was lying on an operating table with her life in the hands of the surgeons.

We finally got to see her when she was 3hrs old, only to be told that the operation was not a sucsess and further surgery was needed, as the opening where Millies bowel was had started to close over and had almost closed and it had survived by one tiny blood vessel keeping it alive, so Millies bowel was all inside but not conected to anything, so from the outside Millie looked like a normal baby, but nobody knew what was actually going on inside, we then spent an agonising 6 weeks just waiting for her next op to find out if any of her bowel had mended itself and survived.

Thankfully Millie came back from her 2nd surgery and all her bowel was all ok and as soon as she got over the surgery and all had settled down she could finally start having some milk which seemed like forever that we had waited for this day, Millie was 8weeks old , She tolerated milk well and gradually increased over the next few weeks and finally her bowel was working well, and at 11 weeks old we could bring her home.

She turned 1yr old last week, and what a yr, Millie is still very small for her age, she still gets weighed weekly to keep a close eye on her, she eats well, but she has difficulty absorbing all the nutrients from her food due to the damage from the bowel being on the outside, but we are told that it is something that she will grow out of, as she grows her bowel will grow, but to look at her you would never think what she has been through to get where she is now.

I hope my story has given some of you some inspiration, and I would be happy to hear from anyone.

Emma (U.K)