Gastroschisis

My little girl was born July 24, 2008 and she had gastroschisis. Now she is four months and still in the hospital and I am worried to death. The funny thing is she was showing so much progress they started back feeding her and everything. All I want is for her to come home its killing me. My little girl will be four months and will have to have her third surgery on Friday November 14, 2008. I am worried becuase they have to taper her intestines and the surgent says it can be dangerous. I want to know if anyone had their babies with gastroschisis interstines tapered cause if so i want to know the result of what happened. Please send me a message if you have any information about tapering and Please Pray for my baby girl she is so bubbly and beautiful.

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Found out our daughter had gastro at 18 weeks. She was born at 36 weeks 6pds 3 oz. We found out 1 month before she was born that our local pediatric surgeon was not taking new patients. We had to get our baby at birth or immediatley after to Unc which was 3 hours away.  Fortunately she had no intestinal damage.

All of her intestines were out and a small portion of her stomach. We were told by the doctor at the local hospital all of her intestines were dead and she wasn’t going to make it. They transferred her to Unc and the surgeon there examined her intestines and come to find out she had stooled in utero and her intestines were black not because they were dead but from melconium.

They put her intestines in a silo and pushed a little in at a time for 7 days and then she was closed. 7 days after her surgery she stooled which happened to be mothers day. It was the best present I could ever been given. POOP!. Now we knew her bowels were working and we could feed her. The green bile no longer came out of the ripogal tube which they had been suctioning out since she was born. The first day I ever got to hold her was on mothers day. Due to being intubated and all the tubes I did not get to hold her at birth.

They wheeled me in to see her before they took her to UNc and she lay on the table making sucking motions with her mouth. So beautiful.Feedings went slow at first. Only 30 mls for a long period of time. Then they decided to put a feeding tube down to help speed things up and get her off of her tpn( which can cause liver failure, jaundice, and any iv has risk of blood infections).

We got to a point where we knew her body could take a full feed and we thought we’d be going home soon but come to find out the breast milk I was giving her she was allergic too. The gastroschisis masked the milk allergy. She was dumping and having white watery stools and malabsorption. They said babies that didnt have intestinal loss did not have this issues and they didnt know.

The milk intolerence had went on for so long that here body produced so much gas it couldnt pass thru her intestines and she came down with NEC. Its where air gets trapped in the intestinal wall and can cause infection and sometimes surgery required to remove damaged intestine. So feeds were stopped and they put the ripogal tube back in to decompress the stomach. After 7 days of antibiotics and and huge tube down her throat they decided to restart feeds.

The ripogal tube being in her throat and no fluid passing thru living her throat dry and sphincter open she began to reflux. She would not eat because of the burning in her throat. THey started prevacid which seemed to help with the burn but she still spit up. The time she spent working on feeds the filter broke on her tpn and she came down with a blood infection which required a lumbar tap and medication.

Finally after all that NIcu decided that she would never take by mouth what she needed to because she would reflux as soon as she had 30 mls in her stomach and quit eating. We put in g-tube. We never thought our baby would need one of these. We finally got her home. Most of her feeds she takes by mouth and we only use the tube for continous feeds at night and to give medications . Sorry this is so boringly long but I wanted anyone with a gastroschisis baby to really know. I was under the impression before she was born we would have surgery and take her home if her intestines were fine.

I knew if there was damage there were other complications. I guess I was really disapointed that she had a milk allergy. I feel it was the cause for all the other problems she had. I seen other babies even with intestinal loss go home before we did. It was a little unheartening to see these other babies go home before us. I was happy for them but I thought it would be us. We expected her to go home around 8 weeks and we were in the nicu over 20. I wish everyone the best who has a child with gastroschisis.

It is a very emotional battle sometimes but there is a light at the end of tunnel. Our beautiful baby girl is finally home with us and we can love on her everyday.  ***Our baby is currently almost 5mos old. I would like response from anyone with older children with gastro. I’m curious when to start solid foods and how they handled it. Also anyone with some insight on any problems their child had as they got older.

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I’m typing this as my 13 week old daughter naps beside me.  I found out at my 21 week scan that my baby had a gastroschsis.  I am Irish and my husband is Scottish, but we both live in Toronto, Canada.  Before the delivery, we met with a high risk obstetrician, a neonatal specialist and the chief of general surgery at Sick Kids and they all explained what we could expect once our baby was born.  I went for regular ultrasounds as the obstetrician could see that her bowels were becoming more and more dilated.  At 36 weeks she had to come out as the risk of prematurity was less that the risk of the damage being done to her bowels.

I was induced and she was born at 11.58am on June 5th.  She was whisked away to the NICU where her bowels were wrapped in saline to be protected from drying out.  Waiting for the doctors to come and tell us she was stable was the longest hour of our lives.  She had to be intubated at 30 minutes of life.  She was 4lbs 9oz.  The transport team from Sick Kids came to take her in the early hours of the morning, but wheeled her isolette to my bedside so we could see her.  It was heartbreaking to see her and to leave her.

The very next morning we called Sick Kids.  The nurse told us we should have named her fiesty as she did not like being bugged.  I’m glad she had such fight in her.  It turns out she had her bowel, stomach, right falopian tube and right ovary ‘out’.  We were also told at that time that the reason the bowel was becoming dilated in utereo was because she had an atresia (blockage).  They put her bowels in a silo and we were told that once they pushed the bowel back inside and operated to close the defect, we would have to wait 6 weeks before they could operate to remove the blockage.  Only then could they start feeding her.

After 6 days she had surgery.  I was able to hold her for the first time just prior to her surgery.  That is a moment I will never forget.  The surgery was a success.  Slowly she was weaned off morphine and extubated.  I noticed that she kept stooling and when I told surgery, they said they it must not have been a blockage, perhaps it was a narrowing, so they sent her for a contrast study (they place contrast in her stomach and watch via x-ray until it goes through her system).  It made it all the way through - proving there was no blockage.  We were so relieved she wouldn’t have to have the second surgery.  She was started on continuous feeds and a bowel motility agent.

The weeks that followed were long and stressful with many ups and downs.  Iona (we named her after an Island between Ireland and Scotland), kept having ’spells’ where her heart rate would drop and her oxygen levels would de-saturate and we couldn’t figure out why.  She had almost every test in the hospital and were able to rule out what was not causing it, but we never found out what did.  Luckily she grew out of them (after 9 weeks).  She also kept having mysterious ‘infections’, but they were never able to find a true infection…she only showed signs and symptoms.  She really was a mystery baby that kept all the staff on their toes.  We were so nervous the first time she fed by bottle, but she did amazing.  However, she had a feeding study that showed she would silently aspirate into her lungs - meaning that she didn’t have a protective cough to clear her airway.  Maybe that was what caused her spells?  It was a long process of feeding, rejecting feeds and then having to go back on TPN.  I dreaded each time that happened as I had researched how TPN can damage the liver.  When she was finally up to full feeds by bottle (she was drinking my breast milk thickened with a product called SimplyThick), she stopped thriving and went for 2 weeks without gaining weight.  It turned out that Simply Thick was running through her system before her body had a chance to absorb anything.  We switched her to formula thickened with rice cereal and she has been steadily gaining weight since.

She was finally discharged at 11 weeks and has reached the 8lb mark.  She is so alert and has great head control and is as active as any normal healthy baby.  With the exception of some reflux and us having to give her injections for a couple more weeks (for a blood clot she developed in the NICU - a complication that sometimes arises from having a PICC line), she us doing amazing.

She has been through so much…we all have, but hopefully, we can all put it behind us.

PS her scar is minimal

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Hi there,

My name is Nicole and Im 22 years old. I was born in 1986 with Gastroschisis, the defect was unknown to my parents or there physcians untill I was born. I had kinda a ruff childhood with being sick alot but not alot related to gastric functions untill about the age of 17, about then is when I started having problems with digestion,pain, bloating,constipation, all these really awefull, painfull, and uncomfortable things.  I felt like it would take my gut days and days to process anything properly, and that it was never doing a good job of it.   Soooo I saw a couple of physcians about my concerns and obtained the medical records and operative report from the day I was born as sort of a guide to what really “went down” on the day.  Come to find out that I had a defect with the stomach, pancreas, duodenum, colon, and the small and large bowel, all outside the abdominal cavity.  I gave this information to my physcian and they did some tests like a barium swollow to make sure the malroation of the bowel had been corected properly and there were no other internal concerns. the study showed that everything did indeed work “satifactory” was the word they used, but that it just took forever. They did say they belived there were some fair amount of abdominal adheasions that could be causing all these types of symptoms to come and go, and recomended plastic surgery to revise the scar and to take a look at the adheasions.  So I had that done when I was 18 and I felt a little relief after the surgery but not much. So now I’m 22 and still dont feel just right, I believe Ive done what I can and wonder if there is anyone else out there like me who has experienced these same types of issues with this defect later on in there life.  I feel strange not knowing whats going on inside of me it dosent feel like I think it should, and Im sick of being obbsessed about it !?!? I do watch what I eat and excersize regularly but nothing seems to help, ive seen at least 5 doctors  and they tell me that everything should be fine.. but it dosent feel fine !!

Is there anyone out there like me ??

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“A long journey, many bumps, many problems.. it was a long wait, but totally worth it..”

I’m seventeen years old and just less than a week after my 17th birthday I found out I was pregnant, on December 13th, 2007. I was surprised. Shocked mostly. The hardest part was telling my parents and everyone else. I was scared for my life because I didn’t know what I would do and I didn’t know how to take care of a child, even a baby. But I didn’t think anything else would be worse than be pregnant at 17 and I also didn’t think there would be anything more harder than telling my parents about it. But, on March 2nd, 2008 I found out at my Ultrasound that there was something wrong with my baby. They found “abnormalities” in my blood, a lot of TPN. They told me that there was either a problem with the baby, I was having twins, or I lost her. When we had the Ultrasound, that’s when we found out. My baby had Gastroschisis. We saw her little intestines out floating by her belly button.. I was scared, and unsure about what I was just told. I was confused, upset, mad and frustrated.. Everything started going downhill from there. Just a month before I found this out, me and my boyfriend broke up. Too many problems in the relationship, he wasn’t ready and he decided it was best for him to leave me. I was left with nothing but hoping for this baby to come out strong.. she was the only thing that was keeping me going, staying in school and keeping a part-time job on the side.

After being 6 months pregnant, my boyfriend and I finally started working things out and slowly got used to me being pregnant and prepared ourselves for this baby to come. On July 18, I was called to come in to be induced. I was sent home after a few hours and started getting contractions, but they stopped. Then on July 21, I was called to come back to get induced again, but no contractions and was sent home again. Finally, on July 23, I was called to get induced for sure. I had really harsh contractions and stayed the night in the hospital but they stopped around 2 the next morning. On July 24, they decided to put an IV in my arm to make the contractions come faster. About 4-5 hours passed and the contractions started to come, not so bad. But when from 6-8:40 the contractions got too much for me that I had to take Epidural for the pain and was fine for the next few hours. On the morning of July 25, I started to feel the contractions and the pressure. From the 23rd to 25th, I dilated from 1 to 2 to 3 to 5 to 6-7 then to 9. By 6 in the morning I couldn’t take it anymore and the doctor told me it was almost time and to let her know when I needed to push. I kept complaining that it hurt and the contractions were getting worse, and they realized that it wasn’t the contractions but it was actually her coming already.

Then it happened. 37 weeks, 6 days, July 25th, 2008, 7:50AM, 6 lbs. 13 oz. A baby girl was born. I saw her for a second and then she was sent to the next room to cover her bowel and intestines. An hour later I was able to see her before they brought her to the NICU. She didn’t need any breathing tubes, she was breathing all on her own. All I saw was the top of her head and part of her face, and one of her eyes open. I got to touch her head, but I didn’t get to see her look at me or kiss her face. I was still too weak to move and I was lying on a bed right above her head. The surgeons told us they weren’t sure how long it would take to put back her bowel and intestines, it would either take one surgery or two. Then she was sent to the NICU.

Around 7PM that same day, my boyfriend and I went to see her. We didn’t think they finished her surgery because they said they would do it later that night. But when we saw her, she had no intestines out, nothing. They told us that one surgery was a success and it was all inside her. What a relief! She was just resting and recovering.

On July 26, we went to see her again before I finally left the hospital. She was really swollen and looked in so much pain. She had a needle in her head, on her arm, her leg, so many wires.. It was so painful to watch and I couldn’t stand watching. They were telling us how it all depended on her recovery and it was all up to her to stay strong and fight while they helped with more fluids and everything else..

Today, July 27, we went to see her again. And this time, she looked so much better! The needle in her head was gone, the swelling went down to minimum and they slowly took away some fluids. They said she was doing better and she’s doing good. I finally got to touch her for the second time, this time I got to feel her head, her cheeks, her arms, legs, feet, tummy, everything. I saw her eyes open, and then one of them opened just looking at me. I knew she was fighting to open her eyes after being so swollen, and she finally did for a short amount of time to look at me and her dad.

Honestly, this baby is a blessing, a miracle. They fight so hard and stay so strong just to stay here with us. I was worried for over 4 months about her Gastroschisis, but after only 2 days, I’m so relieved that she’s so strong. The doctors and surgeons these days are amazing. I just know everything is going to be fine, and things will always be fine when you pray and have faith.

“It was ALL worth it, and we’re going to stay strong.. just like her.”

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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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Well I was about 11/12 weeks when I found out that my son had gastroschisis. It was my 2nd ultrasound but for some reason when the doctor let my fiance and I know, we weren’t scared. I had seen many birth’s on the discovery channel with children born this way so I didn’t ever worry much. All they did on the show’s was perform surgery on them right away to put the intestines back in….well it wasn’t until about 33 weeks when I found out what could actually happen and that’s when I cried.

So back to my story. My pregnancy was pretty besides the morning sickness that lasted till about 5 months, the heartburn I had to take meds for, the UTI I had to get shots for and the pre-term labor I underwent. At about 32 weeks my fluids starting running low and the baby’s growth rate began to slow down, all normal w/ gastro. according to the docs. At about 34 weeks I was put on bed rest because unknown to me I was having strong contractions only detected by my ob when I went in for an NST. I had hoped for a normal labor but little one was still breech at 36 weeks and my docs wanted me to deliver already so a c-section was schedule for 2/13/08. He weighed 4lbs 14oz and was 17in long.

When my son was born I never got to see him I only heard his cry in the other room and knew he was okay. He went straight into surgery and thankfully they were able to put all of his intestines back in. A few hours later I was wheeled in to go see him, something I vaguely remember because I was still somewhat drugged. That same day he was taken off the ventilator because he was breathing just fine on his own. His replogle stayed in for about a week and a half. They waited another 24hrs after it was taken out and he was then started at 4cc’s. He stayed at that for 24hours and since his stomach digested it well they then bumped it up 2 more cc’s and continued doing that every 12 hours. Throughout his 29 day stay in the ICN he continued to progress greatly. He was given a suppository only twice a few days after his 1st feeding and after that was having bowel movements on his own. By the time I brought him home 3/13/08 he was up to 60-70cc’s. He had some spit up problems at the beginning as well as minor acid reflux but after about a month  those problems had cleared up.

He is now 4 months old weighing in at 14lbs and is 24&3/4in long. The pediactric surgeons said that at 1yr old he will have to have another surgery to attach his stomach muscles. Anyone else told this btw? Oh yeah & he has no belly button.

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Hi Everyone. My name is Kelsey and I live in the NY area. I recently had a baby with gastroschisis and am now for the first time looking at the information available to parents on the internet. I am so thankful that I did not spend much time looking at the information available on the internet, as so much of it is scary and would have only worried me more. I thought it was important to share my experience with other parents who are expecting babies with gastroschisis and let them know that your baby will be okay. I first learned that our baby had gastroschisis when I was 12 weeks pregnant. I remember the hearing the words birth defect about my baby and feeling like I could not breathe. It was a very scary time. For the remainder of my pregnancy I was seen on a weekly basis by a high risk doctor at New York Presbyterian Hospital. I was scared, but I also remember how great it was to get to have an ultrasound every week and see our little girl!

Our daughter, Ryan was born naturally at 37 weeks and weighed 6 lbs. The delivery was without any problems and aside from the gastroschisis Ryan was a healthy beautiful baby! She had the first of two surgeries within a few hours of her arrival. After her surgery she was transferred to the NICU where she received excellent care. Yes, it was very hard to see our baby hooked up to so many monitors and with tubes up her nose and down her throat. Those first few days were very hard as we could not hold her and I felt so helpless. As the days went by she continued to improve. 5 days after her birth she had her second surgery to put the rest of her intestines inside and close her tummy. 9 days after she was born all the tubes were removed and we could finally hold her. It was amazing!! Each day she continued to make progress and the dr’s gradually increased the amount of milk she could eat. I remember the first time she tasted milk - the look in her eyes was priceless. Ryan drank a few cc’s and let out this big sigh as if to say now that’s what I have been waiting for! Each day we would celebrate the increase of milk she could drink and how many times she had pooped. I never realized the small things would become so important. Ryan was released from the NICU 24 days after she was born and is doing great. She has had one follow up appt with the surgeon and he sees no reason for her to have any follow up appointments aside from her regular pediatrician visits. She does not have a belly button and has a small round scar about the size of a pea on her tummy. She is now 3 months old and is a normal healthy baby!

I just want to assure all the parents who have learned that your baby has gastroschisis that your baby will be okay. Yes, every situation is different and I am not a dr, but having gone through everything I am confident that your baby is in excellent hands and will receive the best of care and be at home in your arms before you know it!

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We discovered that our precious little girl and Gastochisis on our 12week scan, and as like most of you spent the next few months constantly worrying about what lied ahead for us. We were closely monitered by monthly scans, followed by weekly as our due date approached.

Millie decided to make a early arrival and was born 5 weeks early weighing in at 5lbs 9oz and she was then whisked away to SCBU as soon as she was born, it just didnt feel real whilst I was still in the delivery room, our little angel was lying on an operating table with her life in the hands of the surgeons.

We finally got to see her when she was 3hrs old, only to be told that the operation was not a sucsess and further surgery was needed, as the opening where Millies bowel was had started to close over and had almost closed and it had survived by one tiny blood vessel keeping it alive, so Millies bowel was all inside but not conected to anything, so from the outside Millie looked like a normal baby, but nobody knew what was actually going on inside, we then spent an agonising 6 weeks just waiting for her next op to find out if any of her bowel had mended itself and survived.

Thankfully Millie came back from her 2nd surgery and all her bowel was all ok and as soon as she got over the surgery and all had settled down she could finally start having some milk which seemed like forever that we had waited for this day, Millie was 8weeks old , She tolerated milk well and gradually increased over the next few weeks and finally her bowel was working well, and at 11 weeks old we could bring her home.

She turned 1yr old last week, and what a yr, Millie is still very small for her age, she still gets weighed weekly to keep a close eye on her, she eats well, but she has difficulty absorbing all the nutrients from her food due to the damage from the bowel being on the outside, but we are told that it is something that she will grow out of, as she grows her bowel will grow, but to look at her you would never think what she has been through to get where she is now.

I hope my story has given some of you some inspiration, and I would be happy to hear from anyone.

Emma (U.K)

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I have a daughter who is going to be 12 in june 2008. she was born with gastroschisis. i found out she had the condition at my 16 week scan. i was nearly 17 years old and single. she was born in Lewisham hospital and had surgery to fix the problem straight after birth.

i saw her for the first time aged 8 hours old. she was fed orally for the first time aged 2 weeks and she came home aged 4 weeks. she is a happy and healthy girl who i still look at in amazement every day.

She doesn`t have a normal belly button but is aware of her birth and why she has a different tummy button. i want you all to know…those of you who are expecting a baby with gastroschisis or have recently given birth…that its not always a dark tunnel. it will be a long and difficult journey but keep positive and enjoy your special, brave child who you are blessed to have.

i am happy to email anyone personally. email me at sleney@hotmail.co.uk

sherry sleney

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