Gastroschisis

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.

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.

Devin was born around two months early with an intestinal atresia caused by Gastroschisis. He has been living with Short Bowel Syndrome since he was two days old, had four major surgeries to try and fix his intestines and is now in the process of being listed for a small bowel and liver transplant. We were living in Germany when we found out that Devin would be born with Gastroschisis. We were told that it would not be a big deal and that he would be in the hospital only 4 to 6 weeks and there would be no long-term medical issues… At the most maybe two surgeries to fix everything and put it all back where is goes.

I SO wish that was the case! The military gave us the choice to stay in Germany and have him in a German hospital over three hours away from where we lived or pick up and move back to the US to have him. We picked to go back to the US and the military moved us to Tripler Army Medical Center in Hawaii.

It was nice for all of a week..At only 32 weeks along in my pregnancy and only being in Hawaii for 1 week I went into labor. I was put on meds to try and stop the labor for almost two day when we were finely told that they could not stop him from coming. All 4 pounds and 19 inches of Devin was born at 0337 on Oct. 2, 2006 Monday morning after only 9 minutes of pushing.

I will never forget his first cry! All I saw before he was taken away for his first surgery was he was a blond. At two days old I had not seen him yet and he had already been thru two major surgeries. After his second surgery his doctor came in to my room to tell me that “He will not live and if he does he will never be a normal child ~ He needs an intestinal transplant.

We are flying him to Seattle Children’s next week.” (I will NEVER forget a single word of what that doctor told me as she walked in my room.)  I had not even seen my little boy yet and I was being told that he would not make it. So we went from thinking at the longest a two month stay in the NICU to being told that he would have a very short, painful life. After his second surgery he had lost all of his small intestines but maybe 25cm and half of his colon. And was dilated to over three times the normal size.

Devin was flown to Seattle Children’s on Oct. 13th and had his third surgery on Nov. 4th (to make his bowel longer and not as wide). It seemed to work at first, but only a week after surgery he had dilated right back out and was not able to take any rate of feeds. After that happened, talk of transplant was brought up and the work up was started right before Thanksgiving.

But that was all put on hold until they could try the S.T.E.P. again in another three months.From Nov of ‘06 to today he has had a countless number of blood transfusions, line infections (blood infections), tummy infections, blood clots, ICU trips, UTI’s, PICC lines and Broviacs removed and replaced, and two Lipid overdoses. March 13th Devin had his fourth surgery (another S.T.E.P.) in hopes that this one would work and he would not need to be placed on the transplant list. It was working and everything was looking wonderful until he had gotten his latest line infection last month.

He had seven different bugs in his blood, two in his urine and a temp of 105.2. The ER doctor told us that if Luis had not woken up to check on him, Devin’s temp would have climbed so high that he never would have woken up that morning. Right after the infection was cleared and he was starting to look good again Devin started to stool from around his G-Tube. No blockage was found, but they did find that his small bowel was starting to dilate back out again. He now has a GJ-Tube in hopes that that will help things out a little while Devin now waits to be listed for a small bowel and liver transplant.More than half of the US has NO idea that small bowel is a largely needed organ for donation.  Many children die every year waiting for this organ that never comes because no one knows that it is needed let alone transplanted.  I have added some links for more info on these subjects if you would like to know more.Please pass the word and help save a childs life!  Even just some one knowing or talking about bowel transplantation and the Donate Life campaign can give a child a second chance.

• http://www.seattlechildrens.org/
• http://www.wcox.com.au/gastrosc.htm
• http://health.allrefer.com/health/gastroschisis-gastroschisis-repair-series-3.html
• http://cpmcnet.columbia.edu/dept/cs/news/research/2006_step.html
• http://www.regence.com/trgmedpol/transplant/tra09.html
• http://www.caringbridge.org/visit/devintoledo
• http://www.caringbridge.org/visit/jaycealan
• http://www.unos.org

When I was 5 months pregnant with my son Kiwame Michael Wilson JR, I was told by my doctor the sonogram showed my baby had Gastroschisis. I was considered to be high risk.

That means I was to be seen by the high risk patient doctor all through my pregnancy. I was going to the doctor office twice a week. My son was supposed to be born on November 17th 2007, but I guess he decided he was coming on October 10th 2007. I gave birth to a beautiful baby boy at 4:30 am.

He weighed only 3 lbs and 5.9 ounces. He was my first child. Me and my fiance were proud parents to our son. The hardest thing was to see my baby with so many tubes inside his tiny body. But I knew they were there to make him better. My son had surgery on October 19th at 3:00 pm. I was told everything went great and he would probably be home sometime in December.

On October 24th at 1:49 pm my phone rang and it was the hospital asking me and my fiance to come to the hospital. When we got there several doctors and nurses surrounded our sons bed. He didn’t look so well and his skin color was purple.

Then at 3:05 they pernounced my baby dead. I was crying and in shock all at once I couldn’t believe my son had turned 2 weeks old the same day and died. I want to know why this happened when I was told several times he was ok and nothing was wrong with him even 3 days after his surgery.

The only thing I was told is my son was not breathing to fast and hard. The doctor took us to a room in the hospital and told me and my fiance our son had a collasped lung, a infection in his blood, and pneumonia. I couldn’t believe that my baby had all these problems and just now they find this on the day he died.

I want answers to how all this happened to a baby born at 34 1/2 weeks with Gastroschisis. Nobody I had spoke to about this birth defect told me any story about their baby or a baby dying from this defect.

Nobody ever told me my baby would deal with these complications after surgery. So I want to know why all of this happened to my son who was only with us for 2 weeks and then died.

All I have left is my son ashes, pictures, and my memories of his birth, his touch, his smell, his facial expressions, his beautiful eyes, and his smile. It’s only been 3 days since he’s been gone. I don’t even have his ashes yet. But I do know I will never forget my first born Kiwame Michael Wilson JR.

I Love You and will always think about you. Goodbye my son, my baby, MY LOVE!!!!!!!!

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`m new to this … well i had never even heard of gastroschisis and you always think it will never happen to me and well it did i went in to have a ultrasound done by one of the people who does it 4d and 3d and well, i went in to found out the babys sex cause so badly i wanted a girl because i already have a lil 2 yr old boy and i was so excited to go and nervous because i knew i would be a little upset if it was a boy but little did i know that wouldnt even matter after what the doctor would end up telling me.

Well me and my husband went in and she started out using a regular ultrasound (not 3 or 4d) and i could tell right away by her face that something was not right but she just continued to talk about other things but then she asked how many ultrasounds i had had and who did them because my baby has gastroschisis and she went on to tell me so many things about what it was and what was to come and i`m just sitting there still trying to deal with her saying that he had gastroschisis that his intestines were NOT in his body.

Then the tears came, all i said, all i wanted to know was the gender, why my baby?

I was devastated but anyways i really dont know what to do my obgyn didn`t even notice it and he had done a ultrasound 4 wks prior i just know he is not competent to handle delivering of this type of baby and he hasn`t even called to make the apt.s that she said i would need to be going to, i`m already 30 wks pregnant and i just dont know….

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……..

Hello. My name is Jordan Bennett. I am 18 years old and my husband and I just got married.
We are in our 5th month of pregnancy and we just got the news that our baby will be born with gastroschisis. I know this is a treatable thing, but my heart is just aching for my baby and I’m so worried about the surgery and things to come.

I haven’t really got a chance to talk to the doctor about things yet. It’s just hard financially and just plain worrying.

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.

Hi i am 17 years of age and 16 weeks pregnant i went for a dating scan about 4 weeks ago and i was told that my baby had gastroschisis and wanted to do a further scan when i was 16 weeks.

I had the scan done last thursday and she was concerned because there was fluid on the babys brain and a lump on her spine and her spine was bent.
The doctor said she wanted to do an amniocentisis and i had the choice of terminating the pregnancy or carrying on.

When the doctor went to go get some info i told my mum that every one deserves a chance at life. so i decided to carry on. was this the right thing to do or am i being selfish for putting her life at risk. update after amniocentisis on Thursday.