Gastroschisis

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

Apr-18-08

Gastroschisis baby now 3 months old!

Posted by Dean

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.

Apr-18-08

Kyler’s Story

Posted by Dean

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.

Apr-18-08

Baby # 2 on the way

Posted by Dean

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….

Apr-18-08

Granddaughter was born!

Posted by Dean

I am Tracey’s mom… I have been a quiet member here for a
while…. I wanted to let everyone know that what I thought was a
normal ultrasound and prenatal visit yesterday turned out to be Isabella’s birthday! Isabella Marie was delivered at 5:11 pm at 34 weeks gestation by emergency c - section. I forgot how long she is but she weighed in at 3 lbs 14 ozs. They did not like the amount of bowel dilation seen on the ultrasound so from the DR we went straight to the hospital.

Both baby and mom are currently doing wonderful. Baby is breathing on her own (no ventilator) and they have a silo on her and said that they will probably attempt closure over the weekend.

They also said that she has been pooping a whole lot and the dilation has gone down quite a bit… also the fluid coming from her stomach is light yellow and not green and that said that this was good too.. Not sure when I will have the time to get back here but wanted to stop by quickly to let everyone know…. Thanks so much for all the support of this forum….

Apr-18-08

My first baby

Posted by Dean

Hello, I have just found out at my 28 weeks scan that my baby  has gastroschisis…

Today october 4, 2007, i went to the hospital to have a gender identification of  my baby (ultrasound). I was so excited with my husband to know the sex, and its a girl, but we are very very very sad because we know that our baby has gastroschisis.

We are so sad and we dont know what to do.Its our first baby.And of course we love her very much.

To my fellow friends who has a experience with this problem,please help me to solve this……how?….why?….and  what i  must to do.

Is my life dangerous too? Please help me…

Thanks a lot..and i wait your response!….God bless.

Sad Mother,

chilmaya

I’m 18 and 32 weeks pregnant with a baby who has gastroschisis. When I was around 12-16 weeks I was getting my ultrasound, I noticed they kept looking at this one particular spot on his stomach.
She didn’t say anything at the time, but they had me go back in the room and wait. Three doctors came in and showed me a picture of my babies stomach and I noticed a bulge coming from the abdomen. They explained to me what it was, I just went blank.

All I thought was ” What did I do wrong?”…”Is he in pain?” and etc. I researched it and found a study that Oxford journals did about gastroschisis, and I found out that it could be linked to acetametaphine (the pregnant womans tylenol) and also decongestants. I thought back when i didn’t know I was pregnant that I had taken both. Is there anyone who also took those meds?