Gastroschisis

Hello all,

My name is Tracy and it is nice to see a supportive site such as this for gastroschisis. I was born on May 20, 1978 with this unfortunate issue. I am now 30 years old and very healthy! I wanted to write to let all of those parents out there know that your child can live a healthy life. I have a beautiful daughter that was born with no problems at all. Chloe is healthy and there was no sign of any issues during pregnancy or at birth.

Because my gastro was so long ago, I have a large 1 inch deep scar that runs from my breast-bone to my pelvis. The scar has always been a sort of medal for me and although babies today will have a belly button and very little scaring…still be supportive. My parents were wonderful at letting me know that I was unique and that was special. I remember as a young girl showing my friends my “cool” difference.

God bless all of the parents going through this now. Your babies are beautiful and it takes special people to deal with an issue like Gastroschisis. However, your babies can live full lives! The only issues I’ve had are blockages a couple of times in my life. I was 14 the first time a blockage snuck upon me and 26 the second.

I hope I haven’t bothered all of you with the fact that I’ve told my life story…but I know how worried I was thinking my child would have this. I can’t imagine how scared the parents of babies with this abnormality are. I’m sure every parent is scared for their future and the here and now. Feel free to ask any questions! I am very open about it.

Have a blessed week!

Tracy

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Hello, I thought i would join this website as i wondered if there were other people registered on here with the condition……. I was reading some of the other posts saying how people have found out in advance about their baby having the condition and how worried they are about how they will live a normal life or the size they will grow to.

I am just letting people know there is nothing to worry about as i was born with no warning to my parents that i had gastroschisis, as technology wasnt quite as good in 1983/1984 as it is now and the doctors assumed that i was a just a boy not that i had any medical condition. I was born 3 months prem and weighed 5lbs droping to 1.5lbs after one week. Not to worry though as this is sometimes normal.

I spent 3.5 months in hospital and had an amzing surgeon he pionnerd the surgery that they use today with babies that are born with the condition. I have lived a normal life i am happy and healthy i am now 5ft 9inc and weigh a normal weight and have never had anything hold me back. My parents decided for me not to have plastic surgery to cover my scars and decided it was my desicion. I chose not to have the op and think that my scars are part of me and who i am.

I hope i haven`t bored you and hope that i have settled any fears over small babies and people not leading a normal life when you are born with gastorschisis.

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My name is antoinette. I am 25 yrs old. I was born on Halloween day( 10-31-82) with gastroschisis. I am extremely happy that I have found this web site. I thought I was the only one born with this birth defect. I have always wanted to meet and talk to someone about this defect.

Living with this has been very tough for me being the one child born out of four kids with this abnormality. I have so many questions about this defect. Unfortunatley I wasn’t blessed with having loving parents there to educate me on gastroschisis.

I still have to live with medical problems because of the large anount of intestines lost at birth. When I was 18 yrs old I was able to become independant and thats when I started to slowly learn about this birth defect. I was hospitalized for the first 6 months of my life. I am very insecure about my body becuase of the gigantic scar across my stomach. I wish I could wear a 2 piece bathing suit and feel attractive.

Sometimes when I am dealing with my life long health problems, I feel that this is such a burden on me. In the end, I know there are blessings in disguise and I believe this is one of them. If it wasn’t for being born with gastroschisis then I know I wouldn’t be as strong as a person that I am today.

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Hello!

I was 24 yrs old  in 2004 when my husband and i went in for a routine check-up during my second pregnancy.  this was such an exciting time b/c we were going to find out the sex our newest addition to the family.  when we went to the doctor’s office all was well until his face went a blank and he told us something did not appear normal.  he sent me on to a speacialist which saw me the same day.  he told me that my SON had gastroschisis and would most likely need surgery after his birth.

this was the beginning of complete and total disaray for me.  i was so incredibly scared for my baby and his health.  not to mention that i had never heard of this rare abnormalty before in my life.  i was scared and very detemined for answers which seemed few and far between.  as i’m sure most of you know, they like to say less than more in most of these situations.

my husband and i are both white were in our twenty’s at the time.  we had both come from pretty well to do families in texas.

i was told that i was a high risk pregnancy and would be seen by the dr. every 2 weeks.  this did offer me a bit of comfort b/c i was in contact with the doctors so much and i felt like i was able to moniter my pregnancy better.

as the days grew closer to my son’s much awaited arrival my husband and i grew more and more nervous.  so nervous it was gut wrenching.  i can’t even try to explain it to someone who can’t relate.  it was the worst feeling in the world.  yet, i was so excited to meet this little man inside of me who was so active and normal seeming to me.

at 37 weeks when i went for my now weekly check up with the specialist, he told me that my baby was entering into growth retardation and needed to be delivered soon.  the did an amnioscentisis and found that his lungs were not quite ready yet.  at this point i was told to expect that he would be small but not much more than that.  it could be a best case scenario if you will or it could be an extreme case.  i was terrified.  i was given a shot to mature his lungs and checked again the next day.  it was then that i was told he was ready to be born!  they scheduled a c-section for the next morning and told me to go home and rest.

i must say that night i cried so much.  i was scared, nervous, scared nervous….you know the feeling.

the next morning i went in for delivery and about 1 hr later i was hearing my sweet little angel being born.  it was the most amazing sound that my ears had ever heard.  knowing he was okay enough to cry was enough for me.  i knew at this point i was in the hands of god and the eyes of the angels.  my son, everson was born 6 pounds 9 ounces and 21 inches long.  this was awesome that he weighed so much!!!!! he amazed everyone immediatley and continues to this very day:)

my son, everson was born with his stomach, appendix, colan, liver, kidneys, small intestine, large intestine, bowel  everything in his midsection on the outside.  much more than i had expected.  he went into surgery 2 hours after he was born.  my husband said that all of his intestines put together were bigger than he was when they delivered him.  my husband watched.  ( i breathe very deeply right now from anxiety that i feel just thinking about it.) during his first surgery they tried  to put everything back inside but were unable to because everything was so swollen from floating in the amniotic fluid for 9 months.  i expected this might happen.

he went through 7 surguries, e-coli, 2 blood tranfusions, paralyzing medication and a lot of love but the finaly got everything in and were able to close up the wall.  THANK YOU GOD!!!!!

now he could begin waking up, trying to eat, keeping the food down, and staying healhy.  this was a whole new path thati did not expect.  b/c once you get evrything in is just like stage 1.  then there is stage 2 of finding out if everything works properly or if he will need further medical attentio in life.    he also suffered from ademia and was so swollen himself.  which i also expected.

at 2 weeks old i got to finally hold my son for the fist time.  my husband and i were beside ourselves.  here was this amazingly stong yet so tiny individual who was a true fighter.  the nurse placed him in my arms and as i put my lips to his cheek his hand laid ever so gently on my face.  for this was a love like no other i  knew:)

after 37 days and many obstacles to get there, my husband i got to leave the hospital with our little miracle boy.  he was eating and digesting 3onces of milk every 3-4 hours.  he also had never had problems with this which was a miracle all in itself.  it’s amazing how each little step in this is a huge enormous miracle by itself.

and now i find myself getting on to the same little strong willed child and i smile and remind myself to thank god each and every day that he is healthy and totally normal.  his scar is bout 3 inches long and is his first battle wound in life.  we call it his “super hero” scar.  because he is a super hero!!

so, to you my thoughts and prayers go out.  these children are amazingly strong, incredibly blessed, and unbelievably loved by so many.  a special thank you goes out to all the doctors, nurses, family, friends and prayers.  thank you.  we love you!  all of you are amazing.  if you are just now going through this please feel free to contact me for support.  but first contact god and place all of your faith in him:)

god bless

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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.

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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

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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.

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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

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My name is Trina Im 22 years old and I was born with gastroschisis.  I was searching for things online about different scarring that could occur from this defect and I came across this website.  I was born in 1985 and I guess they didnt have a lot of options back then being born in a small town of less than a 1000 people I had to be transported to a bigger hospital in a bigger city.
The doctors at the hospital I went to saved my life and for that I am grateful, but i was just wondering if anybody on here has very unusual scarring as i have.

They aren`t like the sacrs that most are given these days mine are severe as one plastic surgeon has told me.  I`m not sure what I can do about them now seeing as how i dont have the means to pay for plastic surgery, but i did just want to know if I was alone in this severe scarring or if anyone else had similar scars as I do.  Your help is greatly appreciated and thank you so much for the support.

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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

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