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.

Hi everyone, this is our story. My son is 3 months old and was born with gastroschisis…

My son was diagnosed with gastroschisis at my 18 week ultrasound. I knew immediately what is was and from then on I had routine ultrasounds and spend the days researching and trying to stay positive.

I started seeing a very caring GP in addition to my local clinic and this extra care really helped me get through the pregnancy. Having the baby checked often really helped to ease my mind during the pregnancy, so for those pregnant now I’d recommend seeking as support as possible.

I was going to be induced at 37 weeks but my son decided to come even earlier and I had an emergency caesarian at 36+2 weeks. I delivered at a major hospital 3 hours from home who have paediatric surgeons on call so his gastroschisis was repaired within four hours after his birth. He had a primary repair and the whole thing was completed quite quickly, but I dont think the outcome would have been affected if he had to wait longer for his surgery.

My son had morphine for pain relief, then baby panadol but was off all pain meds by day 3. He was 5lb 12oz, 4 weeks early, and we spend 16 days in NICU. During our time in NICU we were so proud of him for going through what he had to and now he is a happy healthy 3 month old.

This has only been a short one from me for now but please feel free to contact me with any questions or support you may need. I also have photos if anyone would like to see some.

Hi,

My name is Debbie and this is the story of my Son Tommy, who now is 23. I know some are thinking why put this in with him so old now, but thought it would hopefully give parents of children an idea of what they may expect long term.

I was 18 when I had gotten pregnant and it was unplanned. I was 5′9″ and only 115lbs when i fell pregnant, with a history of anorexia. Obviously, I was very under weight and was told, “You really need to gain weight”.
Well, I sure did that! They did not do any ultrasounds during my pregnancy, so as far as I knew, everything was fine. We thought I was due October 12, 1984. I began gaining weight, and gaining and gaining. By the time I delivered, I had gained a whopping 96lbs. Still, we thought all was fine. In general, my pregnancy was uneventful.

On September 22 1984 about 8.30 in the morning, I started having, what I thought were labor pains. So, around noon headed to the hospital. Scared and worried cause he was not due for 20 days, but the Doctors said that was fine. As my labor progressed, it was rather uneventful, until my water broke.

When it did the mood in the labor room radically changed. Not only was the water very green, but a foot came barreling out and ripped me both inside and out. I can remember them rushing around the room, telling my husband he needed to leave. between crying from the pain and trying to get answers as to what was going on, I can still remember the looks on the nurses faces as they rushed me to the delivery room.

They immediately put me under general anesthesia. I can still remember starting to wake up from it and looking for my husband, who was standing next to me but did not see my baby. Did not hear any crying.

It is strange how I can close my eyes and still hear the doctor as he walked over to me. I did not hear, congratulations you have a son, the words I heard were “there are complications with the baby” I was like, what? What do you mean complications? Where is my baby! They proceeded to tell me that he was born with what was called gastroschisis.

I had no idea what they meant! Then they said, “Your son’s bowels are on the outside of his body.” To this day, those words still ring in my head. We have to transport him to another hospital for emergency surgery. Of course, I started to cry.  It was a combination of ‘I have a son’ and “what?  What do you mean transport, surgery?”

By that point, I was more aware of what they were saying and told them I want to see my son. They had already put him in the incubator and was on his way to the ambulance to be transported to the other hospital. Tommy was 5 lbs 7 oz and 20 inches long. I was taken to the recovery room, and sent my husband to the other hospital. Now, you would think that your parents would want to know you had there first grandchild. My relationship with them had been strained, as they did not like my husband.

The night before I had gone into labor, my mother had said to me “I hope the baby is born dead” Now, there was a very good chance my son may not live. I called hoping that when they heard, there attitude would change. My mother answered the phone, I told her I was in the hospital and had had the baby. Her response was “who gives a damn” Then my father got on the phone and started asking what you would expect, what did you have, how the baby is, how are you, which he did. I proceeded to tell him I had a son but there were complications. Well, I expected their support but, did not get it.

A little while later I received a call from the other hospital to fill me in on what was going on. It was then I learned there was more bad news. Tommy was not 20 days early, but rather 10 weeks early. He was also found to have pneumonia in both his lungs and they said, “We do not know if he is going to survive the next 24 hours.”

So there I was, a different hospital than my son was, all alone. His surgery took 5 1/2 hours and they just shoved everything back in.

The next morning, I told them I want to leave; I want to be with my son, who they still were very unsure if he was going to survive. They wanted me to stay because of the difficult delivery. I said, you can either release me, or give me the form to sign AMA. I was afraid my son was going to die and I would not get to see him, hold him or even touch him. They did release me.

Obviously, he did survive. It was a tough 12 weeks of him in the NICU. With how early he was, I did not have any milk so was unable to even pump for when he could eat. I spent every day, all day at the hospital. They had rooms in the professional building attached that we were able to stay at so we were close. It was a very long 12 weeks, but finally, he was able to come home.

Tommy was home for a week when it was discovered that he had an inaugural hernia, and he needed to be re-admitted again, for emergency surgery. I did not think I could take anymore. During the surgery, Tommy flat lined twice. What normally would be maybe a few days in the hospital, ended up a week in PICU and then another 4 days in pediatrics. Again, the doctors were shocked and he survived.

While growing up Tommy had a real problem with failure to thrive. He just could not gain weight. When he was six, we found out that three infants in the neonatal unit at the same time he was, had received tainted blood, with, you guessed it, HIV. Therefore, now it was time for another scare. Luckily, his HIV was negative. However, we did find out that he had CMV as well as Ebstien Barr. When they did x-rays, we found out that he also had a transverse malrotated colon. It explained why even now to a certain degree, he has a bit of a barrel chest. They had just shoved everything back in.

Growing up, he was always very self-conscious of the scar that is about 9 inches long. Even now, he avoids walking around without a shirt as is self-conscious.

Considering all his obstacles, He has done very well. Tommy is 6′3″ and is 145lbs, so still very thin. Recently he has had problems with one side of the incision occasionally having like a green oozing coming from it. why?  Who knows. Currently they are talking about possibly having to go in and remove scar tissue as his is rather thick.

I was not lucky and did not have anything like this when Tommy was little. No contact with others with a child born with the same problem, no idea what to expect or support from others who understood what I was going through. Even with all his problems, I did have another child, 26 months later. A full term very healthy daughter who is now in the US Navy. Was I scared when got pregnant with her? Absolutely petrified! I had a total of nine ultrasounds, and a few scares with pre term labor.

Knowing that those of you that are having children now with Gastroschisis are lucky. They are finding it much more often while you are pregnant and it helps prepare you for what is to come, but you can never be prepared for an ill child.

You also have a site like this to talk to others whom have been through what you are going through and are here to talk to you about it, understand what you are feeling, and are here to listen.

Over the past 23 years I have spoken often with parents, either knowing there child has the defect and answered questions as a parent knowing what to expect, and even on about 6 occasions, been there for them, when there child was first born. Even being there for them when they have first gone into a NICU.

Tommy’s story is one, as your Childs will be, like no other child born with Gastroschisis. But, know, if you need someone to ask a question, or just to be able to call and be there for you, I would be more than happy to be as I have tried to give others the support which I did not receive. Know that now, the treatments are better, not rushed and so much more is known and understood than 23 years ago.

If anyone wants to ask me anything at all, please feel free to either email me or even IM me. Now, at 42, I am happily re married, and dealing with my own medical disability of Reflex Sympathetic Dystrophy for the past 9 years. So, I am on the computer a lot, both my AIM and Yahoo id is panthrvamp so if ever want to write or chat, please don’t hesitate, and if want to talk on the phone, just reach me via that email address or ID and would be more than happy to give you my number.

The best way to get through having a child with ANY birth defect, is to have someone to talk to, that may understand the exact thing you are going through or even just the stress of having a child in a NICU unit. I wish there was something like this for me when my son was little and growing up.

For those that are experiencing raising a child born with Gastroschisis, I hope that you find my story as one that says, you will get through it, they can do very well.

Blessed Be

Debbie

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.

My son was born with gastroschisis on October 4, 2006 at 36 weeks, which is pretty normal for babies with gastroschisis.

We had found out that he would be born with this ‘defect’ around 14 weeks. We had plenty of time to do research and to prepare outselves, which I was VERY thankful for!

When he was born they immediatlly took him and wrapped up his belly so that he woudn’t get an infection. Therefore I didn’t get to see him after he was born for about an hour, that was the longest hour EVER! They then took him to Children’s Hospital to do his surgery and admit him to the NICU. His surgery went fantastic, they got all of his intestines in on the first try, so he didn’t have to have a silo, and we were very thinkful for that. After his first surgery he did very well for about 2 weeks, he was doing great with his feedings and had two bottles. THEN… he ended up getting NEC, which I’ve got to say was the most frighening thing!! He got SO, SO sick. He had a fever for about a day and nobody knew why. That day his father and I were at his bedside pretty much all day. We went home in the early evening and I went back up to see how he was doing a little later, I went to get him out of his isolete and his nurse told me not to because he was too sick (still not knowing what was wrong). So being so upset and in tears I went home to go to bed and around 11pm his nurse called us to tell us that his surgeon had been down to see him and that they would be doing surgery on him at 5 am. We go the call around 4 am to come in for his surgery. When we got there we had been told that Travis got so vad during the night that they had to give him morphine and put him on a venilater. That surgery went well, it was long because the doctor didn’t know how much of the intestines had gone bad until he got in there. Ended up that not too much was bad, thank God!!!! He had to do another surgery 2 days after that one to reattach the ends that he had cut out, and that one as well went very good!!

Travis got to go home after 71 days in the NICU. Oh yeah, he went home with an iliostomy becuase he had a colon atresha (sorry, I have no idea how to spell that). Which means that his colon was closed or just too small for anything to pass through. So at 5 months he went back for yet another surgery to reverse that. He was only in the hospital for 6 days for that one.

Now he 7-1/2 months old and doing wonderfully!!!

We couldn’t be more proud of him!!! He is so, so unbelieveably strong!!!

story added by froggieandone on 14 May 2007 within the Gastroschisis Birth Story category

Hello all My name is Kymmy My son was born 3/21/03 with gastro he is doing well now we have had alot of set backs in the begining with hernias alergies you name it.

Well He is truly a miracle I was supposed to have reconstructive surgery on my uterus before I could carry a child full term

(I had 9 miscarriages before he came long) they needed to take a tremendous amount of scar tissue out. But when I went to the hopsital for a severe migrain  and stomach pains the told me I was 3 weeks pregnant, I was happy at first untill I realized that,”Hey why am I getting excited and happy I wont carry for long”, So the docs put me on bedrest. I was doing well until I hit the middle of the 3rd month then

I started having contractions and spotting right away I thought the worst, but the docs put me on meds to stop the contractions and steroids for his lungs I went in for contractions at least once a week so they would mess with my meds. I lasted until 8 1/2 months then was rushed in for an emergency c-section cause his heart rate dropped dramaticaly then went almost off the charts.

Well sorry I went on and on but I love my little miracle and am very lucky to have him and he is doing so well. Thank you for listening to my story and I wish you all luck and am here if any one wants to talk.

Sincerely,

Kymmy

Hi, my name is Amber. I went through gastroschisis when I was a baby!

I am 14 now, and my life is wonderful!!!  I used to be made fun of when I went swimming, because of the scar on my stomach; I always wore one peices, but now all i wear is 2 peices. You get over it, and now I don’t care what people think about me ! My mom always told me that, “it doesn’t matter if people make fun of me, You’ll always have a story to tell !”

For all of the women having a baby with gastroschisis, and for all the kids that have had it, I am praying for you, and I know God will take care of you !!!

Love:  Amber

My name is Kylie and I’m eighteen years old. I thought you’d be interested in hearing my story so you can learn about possible long term issues with gastroschisis.

My parents married young and my mom had me when she was nineteen. Since I was born in 1989, most pregnancies didn’t have ultrasounds done unless they were high risk ones, so my mother didn’t have one through out the pregnancy.

I was born a month early and was a natural birth so when I was born and my stomach was open with my insides coming out, I was rushed immediately to a children’s hospital. My mom only go to see me for a few seconds and didn’t even get to hold me. I was flown to the hospital and immediately went into a small surgery to secure my vitals. The organs that protruded were wrapped in gauze on top of my stomach and I had a small surgery every day for almost a month. They shaved what little hair I had and fed me through tubes in my head and my leg. The doctors told my mom that my surgeries were so difficult that it was like putting toothpaste back into a tube. I’m lucky though because my doctor ended up successfully separating conjoined twins later on.

I finally got to go home when I was almost a month old. I was born very small but gained a few pounds in the hospital. They thought there might have been damage to one of my ovaries but they can’t be sure. If so, I’ll have a narrower chance of having children. My scar on my stomach is vertical and is now six to eight inches long so I technically am known as the girl with no bellybutton. I also have three to four inch scars on my right leg from where I was fed through tubes.

Ultimately, I’ve grown to be a very happy, healthy girl. I’m a freshman in college and I’m living my life each day at a time. However, for the past five or so years, my stomach scar has had pains and the doctors just believe I have built up scar tissue and it wouldn’t be good to have to operate in the exact same spot as before. But other than the scar tissue, there’s nothing really wrong with me other than typical issues teenagers have.

My parents call me their miracle baby and I thank God every day still that I’m alive. To all you parents who have recently found that their baby will have gastroschisis or to the parents who have babies recovering, I’m a success story you can smile upon. I hope your children will grow to be as normal and healthy as I have.

Hi i originally posted this on http://www.geeps.co.uk but id thought id post it on here as well.

Umm where do i start, i was born in 1986 with Gastroschisis which wasn’t picked up by scans, anyway to cut a long story short im now 21.

Something I have found recently is Fantastic support for parents that have children born with gastroschisis (well done you guys) but meeting people that are now 20+ that were born with gastroschisis seems increasingly difficult. This is probably due to the fact the internet was at an early stage of its life and the outlet for people to discuss such matters wasn’t there.

My Scar is about 11cms long and i must say looks fairy impressive , I have been offered plastic surgery but I wouldn’t change it for the world!

I have a ball of scar tissue on the left hand side of my scar with is about the size of my fist, If i get abit of a gut on me I have been told that the scar tissue will stick out and cause some problems , none which im worried about as I plan to stay in shape but it would have to be removed if that ever happened.

I have also had severe stomach cramps with has had me in a ball on the floor in tears, not fun but recently they have disappeared after around 4 years and a change of diet,, now I have to battle off the hayfever GRRRRR
I lead a very active life, I play rugby and I rock climb a fair bit too, so I can say that been born with gastroschisis hasn’t had a large affect on my life.

It would be great to hear from other people that have gastroschisis to see what experiences they have had, and what dumb questions doctors ask like

‘ So how long have you had gastroschisis for? ‘

I was born at The North Staffs hospital via Caesarian Section , from what ive been told there was an Egyptian doctor there at the time who was willing to leave me for dead, as he hadent a clue what was wrong with me ! , anyway the nurses complained, and i was taken to Birminingham Childrens Hospital to be patched up.

My parents were concerend as im sure anybody would be , i was filled full of feeding tubes and still have the odd scar knocking about ,one on my neck and one just above my right nipple , and one on my left arm , weird things ops , id say the scar is around 30 stiches.

Most Doctors are retards , yes they do a fantasic job but good god i wonder if i know more about stuff than they do !. I know that the nurses at Birmingham Childrens Hospital took photos of me for some medical text book or for some other medical purpose , maybe i should give them a bell and see if i can get my hands on them, thats if they still exist

Hope to hear from someone soon you can email me at spydermonster@hotmail.com

P.S Chicks dig scars