Gastroschisis

I am seventeen and just recently had my first child. It will be an experience that i will never forget. My child was supposed to be born April 27 2008 but gastroschisis made other plans. On Wednesday Febuary 27 i went into the hospital to check the babies heart rate. I hadn`t felt any movement for over 24 hours. The nurse had a look of panic on her face when she couldnt find a heartbeat.

I knew right away that he had died.

They then took me to the ultrasound room and proclaimed that they could not find a heartrate and my son was presumably gone. I was in complete and utter shock. Just last week i was looking through adoption profiles to give my son the future he deserved and now he will never have a future.

My mother was there to support me the whole time. I was then admitted into the hospital right away. I was induced by taking a pill every 4 hours to send me into labor. I was put on morphine drip and i.v after 10 min. Everything around me was happening so fast.

I was not prepared for this to happen that day. I wasnt prepared for a normal delivery either i had planed on having a c-section. I was in labor for over 24 hours till Finally on the 29th at 1:30 i started delivery. It took all of about 7 min till he was out.

The only medication i had was morphine. Once they cut the cord and took him to be cleaned and wrapped it finally sunk in that he was gone. I cried so hard i was hysterical. My mother and my sons father were in the room at the time. I got to hold him all wrapped up in a blanket afterward and his hand and face was the only thing i wanted to see. I just wrapped his fingers around my index fingure and held him. I couldnt believe that he was gone. I had loved him so much.

The afterbirth would not come out because it was so early. I then had to go for a DNC where they remove the afterbirth surgically. I had lost half my blood volume in delivery and during surgery.

When i came back from surgery his father was gone, and he was also taken to the funeral home. His father had left me at around five months into the pregnancy and then not even a couple weeks after that he was already dating someone else. I did not figure the second part out til the morning after delivery when i was still in the hospital he told me. I was getting a blood transufion and filling out a death certificate. I couldn`t believe it. I then stayed in the hospital until Sunday and was released to go home.

Now i feel alone. I sometimes wonder why god chose me to have this heavy burdon. I never did anything wrong. I followed all the rules never even coming around 2nd hand smoke because i wanted everything for my child. I watch as other teen moms smoke everyday and i become very bitter. Im not ashamed that i am a teen mother. I did nothing wrong. But i am ashamed that i am clumped together with people who dont take care of themselves or their child.

I am not irresponsible and i am not immature. I just feel cheated. I know i was too young to give him everything a baby needed, and i wish i could have given the couple i had picked out a child. Even if hes not with me as long as i know that hes living a normal life like every other child i would have been happy. But i didn`t even get that. The doctors gave me no reason to fear this. Every visit i went to all my doctors made the same comment, that he was so active and moved so much.

I named my son Aiden Ray Delvallee

I will always love him -Devon

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.

Hi my daughter Courtney was born in 1996 in UCH London with Gastroschisis. She is now ten and a half and is like any other child. she was discharged from hospital at 4 months old. She is a fit and healthy child, i hope that anyone who has to go through this takes comfort to know that you can get through it and it does get easier.

I was 27 years old and on my first pregnancy.  I had my first ultrasound when I was 7 weeks.  Everything looked good.  Then I had my second ultra-sound  around 22 weeks and we found out the my child had an abdominal wall defect called Gastroschisis.

Wow that was scary.  I had never even heard of that.  The Doctor that I was seeing told me that I should abort.

We were devastated.  We did not understand what was going on.  The doctor told us that if we were to continue on with this pregnancy that we were setting up our child up for death.  He would have muliple surgeries, eating problems, mental deficiencies.  I mean she made it sound like there was no hope for a recovery.  We went home and cried, told our families and basically told her for her word.  I made an appointment to see another doctor that specialized in late-term abortions.  This doctor said that there was no reason to terminate and I did not.  It was the happiest day of my life.  All I needed was a glimmer of hope.

I continued on with the first doctor just for the bi-weekly ultrasounds and she told me that my son was not growing properly, his head was too big compared to the rest of his body and we just could not take her negativity any longer.  We had  to transfer my care to the gastroschisis specialists in Westchester Medical Center which was one hour away from our home.  It was long trips and expensive gasoline bills but it was worth it in the long run.

I was due on the 4th of July 2004.  I delivered Kyler on June 15th, 2005.  I had an enduced labor and had a natural delivery.  He weighed 6 pounds and 7 ounces.  He had a full head of black hair and all his fingers and toes.  He was also perfectly perprtioned.

He was put into surgery and the doctors put all of his bowels inside on the first try.  The put him on a respirator because his body was not used to having his bowels on the inside and it put pressure on his lungs.  I have to tell you that he was feisty.  He did not like the tubes in his nose, he was constantly pulling them out.  I was happy that he was fighting to stay with us.  A more perfect sight I have never seen.  He was in the hospital for 14 days and then he came home with us.

He had severe acid reflux and he was on special formula that was pre-digested.  We had several scares with him but he has not needed another surgery and he can handle any food.  He goes to the bathroom normally and he smart, funny and so healthy.

He just turned 3 and I cannot imagine my life without my son.  Kyler is 3 feet 2.5 inches tall and weighs 41 pounds.  He is in the top 2 percentile for his age.  He is wonderful.  Most people when they see him they don’t believe that he was born with a defect and had  surgery.  His belly button looks a little different than everyone else’s but I am more than happy to see it because that means he is special.

I am a lucky lady and I have my wonderful boyfriend to thank and my family.  They were my backbone and my support system through my ordeal.  I really think that we mom’s need to surround ourselves with positive people.  We have enough to worry about without others not giving us any faith in our circumstances.

I hope that when other mothers read my story it brings them hope.  I wish you all the best of luck and continued success for all of the children being born or diagnosed with Gastroschisis.

I  am 19 and 28 weeks pregnant with my first child. I found out at 20 weeks that my child has Gastroschisis. I just can’t wait for my baby to be born so he can get the help he needs. I  am 19 and 28 weeks pregnant with my first child. I found out at 20 weeks that my child has Gastroschisis. I just can’t wait for my baby to be born so he can get the help he needs.

I am 25 and expecting my second child. Today, my husband and I learned that our baby has gastroschisis. This news has us very concerned for the well-being of our baby.
Beyond the initial surgery our baby will undergo, I don’t know what to expect. How often should ultrasounds be performed to monitor the baby’s development? Any thoughts or suggestions are appreciated. Bst, Ashley

I don’t understand how this happened to the child i am carrying…..i ask myself could i’ve prevented my baby from getting this thing called “gastroschisis”??

So the doctor’s tell me it had nothing to do with what i did; it just happens 3 out of 9 pregnancies…..well, the next step…try and read up on the babies birth, care, after care, coming home….where is the info i need??  i want to stay positive, and how i can handle my baby on feeding tubes, surgery…i will.

Please let my unborn (due 5/13/08) survive when i carry my precious 8-9 months through..i love you, and i don’t even know you yet……..

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………………………