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Thread: Gastroschisis

  1. #1

    Question Gastroschisis

    I have had my 18 week scan and have learnt that my baby has gastroschisis. This is when the baby's abdominal wall has failed to fuse and their poor little bowel is on the outside. (If you saw the first episode of saving babies on ten it is the same as baby Issac). Does anyone else have/had/know of any gastroschisis babies?



    Other than that my baby is fine, and I've no complications or complaints throughout my pregnany so far. I live in Port Macquarie so my baby will no doubt be born via C-Sec and operated on in Sydney or (maybe Newcastle?) soon after birth.

  2. #2

    Join Date
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    Oh you poor thing - what an awful thing to find out about your poor baby.

    Im a paediatric nurse and see a fair few of these babies. I just want to let you know that the first few months are not going to be easy, there will be a few operations and lots of worry, but the majority of babies get through this and are fine. There are some significant problems associated with the condition, especially in relation to their lung development and their intestinal organ development. I would highly advise talking to your obstetrician and a neonatologist to explore options. Your baby will be delivered by caesarian section to avoid undue stress on the organs, and will be taken to the intensive care nursery straight away to be assessed.

    You should have a look on the internet for parent support groups so that you can talk to them and find out about their journeys. It's always a good idea to talk to other parents and find out what worked for them and their baby.

    Make sure you find out as much as you can before the birth about gastroschisis and know your options. I always think it's a good idea to be prepared. Make sure you that focus on the positives as well - after all it's your little person that you made with love!!

    Good luck with everything, I hope I haven't scared you, but this post is strictly from a nursing experience point of view. I feel for you, and truly hope that everything goes well for you and your little person!

  3. #3
    boychuck21 Guest

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    Hey there, I'm very sorry to hear that your baby has gastroschisis. I know it must be difficult with all the worring and all those appointments they put you through. I'm 33 weeks 6 days prego with my second baby girl whom has gastroschisis.

  4. #4
    paradise lost Guest

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    Hi to you both (augustmoon and boychuck),

    My little cousin was born with this 12 years ago. He was half of a set of IVF twins, his brother didn't have it. I think he had 3 operations in total, one or two of them were to insert ballons to stretch his skin in advance of them putting it all where it belonged.

    I think he was nearly 3 months old when he came home from hospital for good, i think the average is less nowadays though and he had a few problems with infection after one of the operations, which delayed the next one iykwim. At 9 months he was a little behind his brother still but by 12 months they were developmentally identical. He's fine now, neerly a teenager! Not sure how relevant this is really - it was ages ago, i'm sure a lot has changed since then.

    Best of luck for you both and your beautiful bubs.

  5. #5

    Smile

    Hi to you both too, and thanks for sharing your story about your cousin as it is all relevant. Luckily gastroschisis repair has a 90% success rate, but the thought of what your newborn baby has to go through after birth is tough. It's nice to meet you boychuck, I'd love to hear more about your story. Where, and when you will be delivering and how you are coping?? Let me know if you would like my email so we can stay in touch. It's very tough being a gastroschisis mum-to-be as there is not alot you can do in the meantime, besides what you would normally do. It's frustrating not being able to help or make it better in some way...

    I'm now going on 26 weeks and will be delivering at john hunter hospital in newcastle. I am being induced at 37 weeks (no C-S!!) and I travel there once a month for scans. I also go to the local antenatal clinic once a month and I see my GP every two weeks. So yes, there are alot of appointments but all worth it to check bubs is safe and sound.

  6. #6
    boychuck21 Guest

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    Yes it is really hard being pregnant with your baby having gastroschisis. I'm right under 34 weeks...so it won't be to much longer for me. I have a rountine ultrasound tomorrow, and I'm going to find out if they are planning on inducing me or just waiting for the baby to come on her own. Im in the US, Washington DC to be exact. I'm having my baby at one of the best hospitals in the country also known as the presidents hospital. So at least that elimates one of the many stresses we go through. I had about 3 appts. every month on average before I hit 30 weeks, and then they threw in the twice weekly NST's, and now that I'm getting closer... my appts are every two weeks instead of 4. Just more stress for both me and the baby. Yes it'd be great for an email, so we can stay in touch. And so that we can learn from each other's expericences. I haven't been able to talked to any other mommys with a gastro. baby. So it's great to actually know that I'm not the only one in this situation. My email is [email protected] so you can reply to me on there if you want. ok take care of yourself and that little boy of yours. ( I'm having a girl )

  7. #7
    boychuck21 Guest

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    Just a little update, I went to my appt. yesterday. Baby now wieghs 4lbs 16oz. They noticed in the last 2 weeks that a portion of her bowel went from not being dilated at all to being dialated pretty badly. So they are going to check on it next wed. and give do an animo to see if thebaby lungs are developed enough so that they can induce me. I'm 34 weeks today, but it scares me to have the baby this early. Well take care and keep in touch.

  8. #8

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    I don't know how my baby is but I lived next door to a guy who has this and he was fine, he plays football and is working to become an ambo. He lives a full and happy life just needs to be a bit more hygienic with his waste bag (can't remember what they are called) and doesn't drink. He has had many surgeries but loves life and is really happy he was able to survive the adversity and carry on and make something of himself. He's just turned 21. Just thought I'd share his story to show ppl do grow up and live happy and healthy lives it is a long and stressful road but they can get there and make something of themselves and be happy

  9. #9

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    Gastroschisis babies do not usually need any 'bags' these days. They are only discharged when the bowel is working correctly, unless of course there was severe damage to the bowel in utero from the amniotic fluid. This is why these babies are induced early.

    Thinking of you boychuck, the same thing may happen to me so I am here for you. My last check said the baby was just under 2lbs at 24 weeks so my little one is powering along in anticipation of an early arrival.

  10. #10
    boychuck21 Guest

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    hey august moon mum...
    well I had another appt. yesterday, and the baby's bowel looked pretty much the same as last week. So that's a great thing. YAY. I was supposed to have an amino but that didn't happen. I was exciting about finally meeting my daughter and well that's not goignt o happen for another week. I know I'm still early but I sure have been worring a long time. It'll just be nice once she comes and has her surgury and I know the facts and not just what could possibly be. I'm 35 weeks today. So next wed. I'll be 35 and 6 so they plan on inducing me so that I'll be 36 weeks once she comes. My doc was explanning how unless it was an emergency they didn't want to induce me to soon, because of with her condition, having to deal with premature issues, would just be to much. So it's best just to wait one more week so we don't have to worry about anything other then gastroschisis. Ah...I hope this all makes sence. It's been a long week. Well let me know how you and your bub is doing. Hope everything is going well. Take care

  11. #11

    Smile

    hello boychuck

    So good to hear from you as I have been thinking of you. I'm really glad to hear that the damage has not worsened and that they are able to wait a bit longer, although I know the wait is really tough and you just want to get on with what needs to be done.

    DP and I had our first antenatal class this week and the midwife said at one point "So, how does everyone think they will feel once the baby is born and in your arms?" Fair enough question but I did feel tears spring to my eyes and I thought you have no idea lady and wanted to walk out of there for a second! LOL! For us gastroschisis mums (and dads) it is only the beginning!

    My next scan is due next week so I will let you know how we go. The last one reported that there was no dilation of the bowels which is great and I hope to get a good report about my little man this time too.

    I have been feeling ok besides the usual daily worrying which I am becoming used to, but lately its been counteracted by having really nice dreams about the baby. Like walking hand in hand when he is a toddler and last night I dreamt I had a C-S, then I jumped up to have a look at the baby who had a mop of black hair and huge blue eyes and no gastroschisis!! Imagine that!

    Thinking of you,

  12. #12
    boychuck21 Guest

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    August,
    Sorry it's been such a long time since I last replied. Great news on my end, our little angel, Brianna, came home from the hospital last Tuesday. Only 14 days in the Nicu and everything seems to be going as if she never had gastroschisis. YAY! Although those 14 days well long, very long. I'm so glad she's home and in my arms. My prayers are with you and your baby, if you have any questions at all, please ask. Take care.

  13. #13

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    boychuck21 great news on your little girl!!

    august moon mum, I used to work in the theatre at the Westmead Kids Hospital, we had quite a few gastrochisis bubs come through there. The surgeons there are world class. Really hope she's doing well for you.

  14. #14
    boychuck21 Guest

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    thanks kim

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