Gastroschisis

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.

good everybody, my name is Michelle a mother of three months old baby boy. his name is Janmer. his name was after the month where he was born which is january and his antibiotic during his sergury meropenem.

at first i really dont know that i have a carried with me on my womb a baby with gastroschisis, i just know when the baby was born. i really felt disappointed, because with all those babies why my son? i really felt sorry with his condition. and we really spend a lot of money, at that time of my delivery my husband had only 1500php. after birth the baby was rush into the hospital for operation. and at that time i just got leave from my class. i am BEED graduating student in Capitol University in Cagayan de Oro city..

now my baby is progressing and has positive response from the operation. its just that he always has a fever.

my question is.. how to handle babies from operation of Gastroschisis, please help me….i love my son..

Hi, my name is Jessica and my husband and I learned at 18 weeks pregnant that our baby had gastroschisis. They we’re unable to tell if the baby was a boy or girl due to all of the intestines and bowels in the way. Finally by amnio we found out our little baby was a girl.

They took Brooklyn 6 weeks early due to bowel dilation. She was born 4/27/01 at Baylor Dallas hospital weighing 5lbs 8oz.

She was on a vent for 1 day and spent 1 month in NICU until she could come home. Even though she has been hospitalized 7 times throughout her 6 years on this earth for pneumonia, asthma, rsv x 2 and influenza, she’s a happy, healthy, active beautiful girl.

We are currently having some issues with horrible constipation and her crying of stomach pain. She is on mirilax 1-2 times a day with not much relief. Today she had a CT scan to rule out obstruction or “kink” . She’s already had a scan a couple of years ago that showed malrotated gut and appendix up by the gallbladder but no obstruction.

This time the Dr. is more concerned because the miralax is not helping even when she was on it 3 times a day.

The CT tech came in in the middle of the scan today to call in the radiologist and said her stomach still had her breakfast in it from 7 hrs before and the barium was only through the small intestine, for her to walk around for 45mns to see if we could get it to the large intestine and they would rescan. Well when rescaned still no barium had moved.

We were sent home and now here I am stressing waiting for an answer. Has anyone else been through this with their gastroschisis baby or themselves? I wish I had found this board along time ago now I hope I can have some people to talk to that understand.

Thanks,

Jess

Hi i’m 19 years old and have a gorgeous little girl called macie pink. she was born on 25th sept 07 with gastroshisis. i found out on my triple test results that she had this condition. i was so worried at first and thought nothing but bad thoughts, i researched everyday about it and started feeling a bit better about it. i had scans every 2 weeks at my local hospital and at the hospital that was delivering ny baby.(addanbrookes)

i was meant to be getting induced at 37 weeks but macie decided to come early at 36 weeks by emergancy c- section. she was 4lb 6oz and had her operation 2 hours after birth. it was a scary experiance but i knew she was in safe hands. the surgeons were brillant and when i got out of recovery i got wheeled into intensive care to see macie she was on a venterlator for 1 day and stayed in the for 1 week then moved into special care for a longer 3 weeks. macie couldn’t have milk until she had a poo which took 2 and half weeks.she started on 1 ml of wilk every 4 hours and was put down her tube in her nose, and went up to 20ml every 3 hours and so on…

finally we got transfered to our local hospital and was there a further 2 weeks. it was a very long and stressful time for us but we’ve got through it and macie is 5 months now weighing 11lb. she so precious and so brave. her scar is hardly noticable.

so to all you mummy’s 2 be with babies going to be born with gastroschisis its really not that bad u must be strong for your little 1s! take care x

My husband and I had a beautiful baby girl born on November 9, 2007 with gastroschisis. It was a long hard journey, but she is now home with us after 52 days in Chidlren’s hospital. This was a very difficult time and we had good days and bad days. One thing that was really hard for me was that someone else was constantly taking care of my baby and making important descisions in her life. It was very hard to leave her and go home at night.

She came home on December 31st and is doing great! She’s eating well and going to the bathroom regualrly. She does have a lot of gas and grunts very often, but otherwise she’s a very happy healthy baby! A miracle child! And we love her lots!

I have read the stories about people in their 20’s that have survived this condition and since I have a daughter that has this condition I would like to know if there have been any women who have had gastroschisis and then grown up and had a baby of their own. If so please let me know how that went for you. I know my daughter is still very young, but of course I want her to be able to have children of her own someday.

I also want to encourgae all those moms out there who are wondering “what did I do to cause this”….no one really knows…so stop blaming yourself.  I know in our situation I was 26 years old (not that young) and I have never used drugs and I did not take any over the counter medications when I was pregnant or before I knew I was pregnant, and I don’t smoke nor am I around smokers while they are smoking on a regualr basis. No one really knows what causes this condition. Sometimes bad things just happen, so please don’t waste time blaming yourself.

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

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.

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.

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!!!!!!!!

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