Gastroschisis

My husband and I couldn’t be more thrilled to find out that we were having a baby. It was the most exciting time in our lives and to have our first born be a boy was even happier cause it’s exactally what we wanted.

I did everything a mother was supposed to do and then on the first visit that my husband couldn’t accompany me to an appointment I took along my mom.

Well we seen a different doctor than I normally did and he was great. He wanted to do a sonagram just to check how our boy was doing. Well he kept looking and not saying anything.

I was starting to get worried after 10 minutes of him looking in the same spot then he looked at me and said I believe there is something wrong.

Well he told us that he thought it was Gastroschisis but he wanted to send me to a specialist because we are from a small town and they don’t deal with that kind of stuff there.

The next week I went to a specialist who said they wanted to see me in their office in Albuquerque, NM next week.

Well my husband, my mom, and myself drove up to Albuquerque and the next day got horrible news. The doctor ran all kinds of tests, then she came in the room with me and my husband and said that it definitely was Gastroschisis and that we had a problem.

She looked at my husband and asked “Sir do you want your son?” My husband puzzled of course said “Yes, what do you mean?” She then told us that if they did not induce labor now he was going to die. My husband replied “Well yank his butt out then.” The doctor did an amnio to check the lungs of our son since I was only 32 weeks.

He was good to go and they began to induce me since they said natural labor is safer due to they don’t know exactally where the intestines are and they could cut them and hurt us both.

Our son was born July 26, 2000, he was 5lbs 3oz and 10in long. I got to hold him for a second on my stomach then they took him away. I tried to send my husband away with him but they wouldn’t allow it. It took several hours before we were allowed to see our child and I was so sad.

Finally the time came and we walked in to what we were not prepared for they didn’t give us all the details on how he would look. It took three surgeries before they finally closed him up and they had to put everything in different then normal that they had to remove his appendix also.

After 2 1/2 months I finally got to hold my child after they finally woke him and took him off the ventillator. There were so many close calls and the questions of you should start thinking about what is best for him and should you turn everything off. It was some of the most hardest descisions of our lives.

After 4 1/2 months our son finally got to come home. It was a back and fourth struggle to Albuquerque for the first year and a half. Many obstructions and kinks and just things not working right. After nine surgeries, several blood transfusions, and many hospitalizations, things finally started looking better.

Our son is now going on 8 years old and still has some problems with his stomach.  But all in all he is a pretty healthy kid and very happy. He loves to run and play football and do all the normal things any boy loves to do. I did have another child after him and was scared to death, but she was very healthy and didn’t have any issues with her stomach.

I only hope this story has helped someone and if you want to talk about it just let me know.

My daughter Erin was born with gastroschisis in 2002.  Her father and I were completely shocked, as we were both healthy and not at all high risk.  My doctor had no idea how to handle this defect and referred us to Perinatal clinic.  That week before the appointment with the specialist was the worst of my life.

The internet was full of horrific stories, and one pro-choice website described this condition as a reason mothers should be granted late-term abortions, that the child was sentenced to a short, painful life.  The misinformation I found was incredible.  I was barely able to function, wondering if my baby was in pain, and what I could have done differently prevent this.

Lucky for us, the specialist put or fears to rest, and assured us that with careful monitoring, and timing the birth properly (after the lungs were developed, before the intestines became too damaged) our daughter had a great chance at a normal life, was not in any pain, and there was no way to determine why this occurred.

My daughter arrived 4 weeks early.  Her intestines had begun to dilate (a sign they are becoming damaged by amniotic fluid) and I entered the hospital to have my labor induced, only to find I was already in labor!  The surgery went very well, although basically all of her intestines were outside of her abdomen, they were able to get them all back in again.

It was intimidating and hard to bond with her, she was my first child, and I was afraid of hurting her.  The nurses seemed so competent and knowledgeable, and I felt so uncertain that I would just sit by her side, often afraid to touch her for dislogding her tubes or bumping the respirator.  I think it may have been a mild case of post partum depression, because I remember feeling awful because while my daughter was beautiful, I didn’t feel that instant bond so many women describe, and it was intensified by my fear of touching and holding her.

After just 23 days, Erin came home, and then everything changed.  Without the nurses and doctors looking over my shoulders, I relaxed, and learned how to care for my baby.  She built up much scar tissue in her abdomen (she also had kidney surgery at 5 months, unfortunately she had kidney defects as well) and was prone to constipation and vomiting, and a bit slow to hit developmental markers, due to all the time in the hospital and being a bit early.  As we bonded, I realized how blessed I was, to be a mother to this spirited, beautiful girl.

Today my daughter is 5, and in kindergarten.  She is completely normal aside from still being prone to constipation.  She is so smart, loves to “help” with household chores, cut out pictures from magazines to make collages, and read whatever children’s stories she can get her hands on.  To anyone facing this issue now, with a pregnancy or a newborn still in the hospital….I know how lucky I am, and my daughter is….I pray you willl be just as lucky, so 5 years from now you feel the same joy that I do every day.

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.