Gastroschisis

My Grandaughter was born  with  scary birth defect and lost all of her intestines but seven inches. We were told she might not live a month. But God blessed us and now she is 16 months old. She is on Tpn therapy, and she also gets Omegavin from Germany. It has not been approved by FDA here in the states yet. She can’t eat because of the lack of a stomach. She throws up a lot. But she is the happiest baby you could ever meet. Please if there is anyone else out there that knows something about  life span for this , Please contact me at iaabac1@aol.com Thank you Shelia

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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 my name is Gaby. When I was about 18 weeks pregnant my AFP test came back elevated. I remember getting the phone call that something was not right. I remember sitting in my bed crying and hysterically called my husband and told him that somthing was wrong with our baby.

I had to wait 4 days, which felt like forever to see the specialist. As we sat at the dr’s office waiting to be seen, I just sat there holding his hand hoping that everything was going to be alright. My husband tried to reassure me that nothing was wrong. As we got called in I felt so scared and so helpless. They counseled us before they actually performed the ultrasound, which was even scarrier. As they performed the Ultrasound, I laid there hoping that everything would be ok, but as he said the words to us,” Let me tell you what I’m seeing…” I knew it everything was not ok.

There would begin a long journey. He told us what Gastroschisis was, but tried to reassure us that if you were going to have a birth defect, this was the best one to have.

I remember crying at the Dr’s office, this was not fair at all. I remember thinking that there are so many people that have abortions and don’t want their kids and here I am who would do anything for my kids, and now my son would be born with Gastroshcisis, it just didn’t seem fair, why me? The whole joy of my pregnancy was robbed, and it just became a constant worry.

On Feb 13. 2008 Matthew was born. He weight 5 lbs. 9oz. He was born at 38 weeks. I could not see him until the next day, but he had surgery a couple hours after he was born and he did infact need a silo. It was a very hard time for me. Who wants to see their son/duaghter go through surgery right after birth. A week later all the bowel was in they did surgery for the closure. After that it was just a waiting game. Day by day the medicines came out, the oxygen came off, and the feedings went up.

Matthew did have a set back at the hospital, but 8 weeks after he was born he was released. He is now 3 months and a half and is such a good, happy, and healthy baby. It was a very hard time for us to go through, but it made us stronger.

I don’t know why it happened, but God does everything for a reason. Matthew is growing day by day. He is such a strong baby. Anyone who would see him could not imagine what he went through. He does have a small scar on his stomach, but I’m sure he is going to be telling his story to many people during his lifetime and has the proof. Anyone reading this who is going through somthing like this, just know that there is hope, gastroschisis babies are miracle babies, they are so strong, they will put up a fight to be here with us. They are truly a blessing!

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Hi my name is julie,

I have a son who at 5 month of pregnancy was diagnosed with gastroschisis, he is now 2 and a half yrs old.

It was so scary at first when we found out the news, we were in the hospital for over two months and we were so lucky because at our first surgery we were done, all the drs said it was God taking care of us because they had never seen a baby with this condition do so well.

Eric will be 3yrs in August 3 of 08, and he eat, play runs like a normal kid. If you want to chat about our experience email me.

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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 Sophie was born in April 2006. She was diagnosed with gastroschisis at my 12 week scan and the roller coaster began. I find it hard to believe now but we discussed terminating the pregnancy, such was the fear of this condition we had never even heard of.

Sophie was born 7 weeks early. I started having contractions and they tried to delay them for 4 days, finally deciding to go ahead with a C section.

Like any mother, I cannot really convey the emotion of overwhelming love I felt at that moment. But the hard part was just starting.

Sophie was operated on the following day but had complications and proceeded  to have 3 more operations over a 4 month stay in hospital. She contracted infection after infection and 3 months after she was born she developed such a serious one that she nearly died. Those 4 days in intesive care were horrific. We saw other babies pass away as we prayed for ours to live. We even had her baptised incase she never made it. She did. Thankyou God. Maybe those daily visits to the hospital chapel and tearful pleadings helped sway him. Whatever the case, I am now in his debt and will always be.

A month after that time in intesive care, Sophie came home from hospital. July 21st 2006. I cried my eyes out with happiness on the journey home and I will always swear that she looked at me with the most loving gaze I have ever seen, I took that as “We made it Mum”.

Sophie is now 20 months old and a bright, happy, mischevious little soul who is our world. She had some diet issues for the first year but these have all been ironed out and she is now a normal toddler with a normal appetite! Her scar is not nice, but this is a very small price to pay for her life.

I do not envy anyone at the start of their journey with gastro and I hope my story does not scare. I just had to be honest about the emotional journey that we had to travel to get where we are. But I tell you today - It was worth every minute to have our daughter in our lives.

Lots of love and best wishes.

Kx

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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!!!

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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 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.

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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

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