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  1. #1
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    Default congenital diaphragmatic hernia

    Has anybody here had a baby with this? how long was your NICU stay and how many surgeries were needed?
    Trying to research as much as I can to get my head around this.
    Thank you

  2. #2
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    SPC is offline Senior Member
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    I'm a NICU nurse and have looked after many babies with CDH. It's enormously variable in terms of severity and outlook, but generally much better prognosis these days as opposed to when I first started nursing 20 years ago. May I ask what your situation is?

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    Thank you SPC at the moment we are unsure, we have an ultrasound on tuesday that will give us more answers at the moment the hernia is only suspected as in the 12 weeks u/s the heart was ah what wording was used ... well it wasnt were it was meant to be suggesting that the baby has a diaphagmatic hernia, but on tuesday we should know more, im just a little lost at the moment

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    hi rainbowmummy2002,

    i felt like i had to register on bub hub so i could reply to your post. i know when our daughter was diagnosed i searched online for so many hours, days and weeks and the online support we recieved helped us to stay positive. firstly, im sorry for your diagnosis, i know how it feels and the unknown is the worst part, as well as the feeling of being alone. i will tell you our story..

    we had a perfect pregnancy and our 12 week and 20 weeks scan was all clear. we were so excited, due in august 2007 and we were planning to deliver in our local country hospital. when i was 32 weeks we decided to head to the city to buy all of our final things for the nursery, and to have a 3d scan. this is when it all went pear shaped! we were sent straight from the ultrasound place to the WCH in adelaide to see specialists and have another scan, which took hours. all we were told originally was not to panic but there was something wrong with our baby. she had a CDH. we freaked out! we were devastated, i have never cried so hard. of course we were told the worst case scenarios (which im sure youve been told) i also dr. googled which was the worst thing to do. at 36 weeks i had an amnio to discover any related chromosomal problems. thankfully there were none. this was when we found out she was a girl, it was all so bittersweet, i always wanted a girl and now i thought i would lose her.

    anyway... for the next 7 weeks i was a mess. so was my husband. i slept with the tv on every night so when i woke up i wouldnt feel that terrible worry and lonliness so severely.

    at 36 weeks we moved to the city temporarily, just incase i delivered early. i was induced at 39 weeks. i was in labour for a long time. i secretly didnt want to deliver because i knew she might die. there were around 15 people in the room as i finally pushed her out. she was taken straight from me and to the PICU. no cuddles. i didnt see her at all. she was purple. she didnt make a sound. my husband followed her as they intubated her and stabilised her in the PICU. 4 hours later i saw her for the first time but i still couldnt see her face as she was covered in tape.

    Our girl was a fighter, we were always positive for her sake. we kept a diary every day. we learnt ways to care for her (applying cream to her skin, stroking her hair, trying to touch her skin to skin in as many ways as we could) on day 3 the drs decided she was stable enough for surgery. from memory i think the surgery lasted around 4 hours. she was wheeled back to PICU with the most perfect little chest wound. and her stomach looked normal, whereas before surgery she looked like a superwoman with a big puffy chest. we were told she was a severe case, with almost all organs in her chest. her tear was only small though, and was able to be stitched together without any patches, and for that reason she has never had another surgery.

    we were in PICU for only 14 days. we held her for the first time on day 9. she was extubated on around day 12, and i finally saw her face. i expressed for her and she drank my colostrum through an NG tube, and then she took to the boob like a pro! we were moved from PICU to the baby ward on day 14 to day 21, then we took her home. she then had 3 monthly specialist appointments until last year.

    our little miss will be 5 this august. she is the picture of health and 4 year old attitude. she is amazing and always has been. she has 2/3 of a lung capacity on one side so she sometimes gets puffed when running, she has only ever had 2 chest infections. we saw her surgeon for a checkup last year, he was happy to never see us again! that was great news!!

    please know that you are not alone, and that there is nothing you have done to have caused any problems. the problem with CDH is that it has such a range of outcomes. if you can prepare yourself for the best and worst case that helps. and try and enjoy your pregnancy, while the baby is happy and safe inside of you. if i can help in any way, please let me know. also i dont know if youve found then online but CDH cherubs helped me alot, with the stories and support they offer. they are also on facebook now.

    all the best, i will be thinking of you.

    carly

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    holy cow that was an essay! sorry!!

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    Thank you Carly im glad to read a happy story i too have dr googled big mistake!

    Sent from my GT-I9100 using BubHub


 

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