Gastroschisis

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 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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I guess I may officially be the oldest surviving gastroschisis baby on this board thus far! I’ve got you beat by one month, Kathy! I was born at Yale New Haven Hospital in Connecticut, USA in August of 1966 with gastroschisis. I was a full term baby weighing 7 lbs. 6 oz. Without the modern advances of ultrasound, my mother had no idea that I would be born with this birth defect. She was 22 and I was her first child. I was in ICU for about 4 weeks. At that time, mothers were not allowed any contact with their newborns in neonatal ICU, and I recall her telling me how heartsick she was that she was not able to hold me or take me home.

It was traumatic as a little girl and young teenager having no belly button (I also had nothing covering my umbilical area, so I have a 3″ scar in the middle of my abdomen), but I soon got to like educating people who thought it was impossible not to have a belly button! By the time I was in my late teens, I had no problem wearing a bikini on the beach and no longer felt self conscious about my scar. The only thing I find annoying now is that some of the skin at the top of the scar puckers out (my surgeon’s poor attempt to “create” something that resembled a belly button) and rubs on my clothing.

In putting my internal organs back inside my abdomen, the surgeons removed my appendix, but other than that, as far as I know everything is normal internally. I had a completely normal childhood physically, though I did and do tend to have problems with bad gas pains from time to time (don’t know if that is related to the gastroschisis or not).

Since I adopted both my children, I do not know if there are any effects on my fertility due to the gastroschisis. I never tried to get pregnant, so I have no reason to believe that I am infertile. Everything else seems to be working correctly in that department.

My 3 year old is at that stage where every person she draws has a belly button. I always know which pictures are of me! In fact, two weeks ago she informed her entire preschool class that her mommy did not have a belly button and her teacher argued with her that that couldn’t be true! When I came to pick my daughter up, the teacher said, “You would not believe what your daughter told us today. She says you have no belly button.” Boy, was she shocked when I told her that my little one was telling the truth! I usually get a “how can that be?” response. I tell people, “a belly button is not a vital organ!” People don’t seem to understand that you can be born with an umbilical cord but still not end up with a belly button!

So, as Kathy says, for all the moms out there worried about their babies with gastroschisis, please take heart in the fact that there are those of us who survived without any of the modern conviences of the 21st century and many of us are trudging into middle age leading perfectly healthy lives!

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Hi,

Me and my wife were told our baby had Gastroschisis when she was about 18 weeks pregnant. Each time we have been for a ultrasound we have been told that it is falling behind its gestational age. Is this normal for babies who have been diagnosed with this birth defect. I am extremely worried and constantly thinking about it all day. (it is currently 20days behind in growth).

Many Thanks

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Greetings,

I am currently 25 weeks pregnant and have found the information and posts on this site very informative and helpful. I am happy that this site exists and my thanks go to those who created and maintain this invaluable resource.

At a recent ultrasound measurements were taken of my daughter and I was very worried to learn that she was only in the 3rd percentile for her gestational age. The doctors indicated that they would perform another ultrasound in three weeks to measure our daughter’s growth. They said that if, at that time, she is still under the 10th percentile, the term Fetal Growth Restriction would be applied to this pregnancy and they would begin twice weekly ultrasound monitoring. I was wondering whether any other parents of babies with gastroschisis have had a similar experience? Also, what is the typical birth weight for a baby with this condition?

At this same visit, we were given the opportunity to visit the NICU (neonatal intensive care unit) in order to see where our daughter would be cared for. We also met with the pediatric surgeon. While we were grateful for the opportunity, it was very difficult for us to imagine our daughter stuck in a hospital with tubes and wires everywhere. I wonder if anyone who has already gone through this experience can offer advice on how to deal with this very difficult situation? Also, we have a 17 month old daughter at home and we are both very concerned about how to manage spreading our time between the hospital and still maintaining a sense of normalcy for our oldest daughter.

We appreciate any suggestions you might have.

Warmest Regards,

Ashley & Devlin

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Finding out your expecting twins is a big shock in its self but finding out one of them has Gastroschisis was a lot to take in on my first scan.

I had my amazing girls at 36 weeks chloe was fine but amber was taken straight away to be operated on my partner and mum got to meet amber b4 the operation but i was too ill.

That night amber was left with 36 cm of bowel and had to survive on her PN it was two weeks b4 she could try milk this was 1ml every 2 hours it took along time for her to tolerate this but she never gave up. Unfortunately she developed liver disease and the only way to correct it in time was to get her to tolerate more milk she suprised us all and to this day her liver is fine

Amber spent 4 months in hospital b4 she could come home on her PN since then she has been back and forward to hospital with infections and experiments to get her off her PN but she is not ready just yet.

Amber and chloe are now 21 months their is a big difference in their height and weight but Amber makes up for that with her cheeky little ways Amber is going for tests next week to see if their is any more the medical team can do for her. we have been told so many times she wouldn’t make it, it just goes to show no matter how ill your child is if you don’t give up they will do their best.

I would love to hear from anyone who has had Gastroschisis in their family.

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I recently wrote a piece on my daughter, stephanie, who was born in june 1996.

She had Gastroschisis and was born at 38 weeks. She had her operation and treatment at Lewisham hospital in London.

I have noticed a few new parents on this website who are having a bad time with their news of diagnosis and treatment.

Please keep positive, it’s hard, I know. Gastroschisis isn’t as rare as it used to be 10-15 years ago and the treatment has vastly improved since then. Medicine is improving and the chances of survival rates with Gastroschisis babies are rising.

I’m sending with this post….a huge hug to you all.

Sherry Sleney x x x

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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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At one of our earliest antenatal appointments the midwife said “Your AFP results have come back a little raised, this is nothing to worry about…and its nothing to do with the baby, you may be at risk of pre eclampsia later on, but we shall send you to the hospital for a scan to make sure.” In retrospect this statement was a little confusing, but unusually for me, I was quite trusting and thought no more of it until the day of the scan. Unbeknown to me at the time both my mum and sister were confused by this midwifes explanation and feared the worst.
At week 18 we arrived at the hospital for our scan and the sonographer was extremely tentative and asked us if we fully understood why we were there. Due to the midwifes explanation we were quite noncholent and said that we did, but obviously, we did not. When the sonographer told us what she had found I think she could see we was not exactly prepared for this type of news and took us to a consulting room to speak with the consultant. First of all though a midwife came in and explained that she really didn’t know very much about the condition and said that it was highly likely that I would need to have a caesarean birth and quite early on. The midwife then left and in came the consultant whos greating was “Hello, isn’t it terrible news!” So now full of fear that this was a terrible thing for my baby to have, she then told us that she too didn’t know much about the condition but at one time termination was an option!

I can barely remember the drive home, and when I arrived at work the next day my colleague sent me home as I was in such a state of shock I was no use to man or beast. Fortunately we only had to wait a couple of days to see the wonderful staff at Addenbrookes Hospital. When we arrived there the condition was explained fully by the obstiatrican, pediatric and surgical consultants. Obviously we were still concerned and worried but it was such a relief to hear that I would like have a normal birth and that our son would only be in surgery for about an hour and was 90% likely to experience no further problems following this.

If I could say to that the next 6 months were hassle free I would be lying! I hated being pregnant and felt ill all the time, but in terms of the baby’s health, all of our scans were good and he experienced no adverse reaction to his bowel. I was finally given an induction date for february at 37 weeks and 3 days gest. When we arrived at the hospital for the induction neither of us had slept the night before through the sheer excitement. We waited patiently in a delivery room from about 9am wondering when our time would come. At 4pm a doctor came to tell us that there were no cots available in the neonatal unit and so we should go home and come back the next day! Obviously this was another sleepless night!

We arrived back the next day at 7am as instructed and waited… and waited…. before being told it was likely that we would be sent home again as still no cots were available. At 2pm I started to get very stressed and packed up all our bags and informed the midwife were off! She asked us to hang on as the consultant was on his way to see us. Fortunately we waited and when he arrived he stated that he had negotiated a cot on the pediatric intensive care ward and the induction would commence after all! What a relief!

And so at 5.30pm it “all kicked off” and at 6.30 I went for a walk around the hospital. At approx 7.00 my contractions started. Turns out I hated birth too!! The rest of the night is blurry in parts and totally unfathomable in others. Do not talk to me about birth plans, the thing might as well been ripped up and thrown out the window. I took gas and air, the epidural, forceps, suction and an episotomy!!

At 1200 the following lunchtime I remember being surrounded by a full team of doctors, surgeons and nurses yelling at me to push, but I just couldn’t give any more. I heard the head consultant saying that I had gone too long and that I needed to be prepped for a c section. I was so disappointed and looked to my husband for his help to say ‘No!’ but as I looked around he was welling up and looked in such a state of shock and anxiety that I decided to give in and let it all be over for his sake. However, an other doctor insisted that he only needed a few more minutes and that he was certain I was moments away, and so somehow I managed to summon up some strength and pushed once again. With the help of the forceps and suction George was born at 1215pm weighing 5lbs 13oz.

I was handed him for 3 seconds, and all I managed to do was look at his little face, and then conciously looked down at his bowel to check the colouring (after reading a post on here by another member). It was a lovely pink colour and I remember thinking “he will be fine!” My husband left to see George in the Neonatal unit and sign all the consent forms, and within minutes all the doctors and nurses left too and I was left alone, still confused by the happy, thinking “Oh party over!”

George was operated on within 2 hrs and after the op he was off the ventilator within 1 hr. The staff were amazed. We went to see him in PICU and he was so small and hungry! I am not sure if it was the lack of contact I had had with him at this stage or the happy were still leaving me a bit dazed, but it just didn’t seem real and he certanly was stirring an emotion in me but he didn’t seem like he was mine. But that night when I went back to the ward and my husband went to his room, I was left alone on a ward with mothers surrounded by their babies and it was the worst emotional pain I have ever felt.

The following days were tough and I don’t think I have ever been able to express to anybody how they really felt, you will all know of course, but George was doing well and needed very little nursing care in all. By day 9 I was given the opportunity by a wonderful nurse to try breastfeeding. She saw how strong Georges suck was on my little finger and said there was no harm in trying. George took to it straight away and we were discharged 3 days later!

All the staff said that they had never seen a gastro baby do this well and certainly to be going home so soon and breastfeeding exclusively was no mean feat.

We have been home nearly 7 weeks now and it has been hard. George wants to feed every hour of the day and sleeps very little. Yet he has been slow to put on any weight. He is now 6lb 8oz after 2 very good weeks, but has now been given Infatrini to assist. I am still breastfeeding and love doing so, and I am a sensible well adjusted person, yet I do still feel guilty that I can’t give him all he needs. I do find myself saying sorry to him a lot, and my husband asks me what I have to be sorry about!

We have visted an osteopath twice now as I was concerned about the amount of sleep he was getting and the constant painful crys, and I do think that that has helped, although he has been poorly this week, so he may just be having a rest from the crying until he gets better but I’ll let you know.

Having seen the surgeon today for his follow up appointment he is very happy with Georges progress and the only thing of any note was that he now has a small umbilical hernia, but that will heal in time and is very common in a ‘normal’ baby.

And so now I am just waiting for a normal life to begin, but I expect I’ll never stop worrying about my little soldier!

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