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  1. #201
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    Hey Bunny Lover- it can be a tough journey. Keep strong. If you ever need to offload, need support or just want to chat- I'm absolutely here.

  2. The Following User Says Thank You to BSE For This Useful Post:

    Bunny Lover  (01-12-2013)

  3. #202
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    Thanks BSE

  4. #203
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    hi all i was reading through the thread and find it really helpfull and encouraging my 9 month old was born at 37 weeks via c section weighing 1.650 kgs she was in NICU for 6 weeks she had no problems other than very low weight genetists suggested an array test wich is a very detailed gene study after 8 weeks we find out that she have rss she weighs now 4.3 kgs and 56 cm in heights at 9 month old is anyone here have a rss baby as its very rare genetic disorder especially in australia

  5. #204
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    Quote Originally Posted by layali1 View Post
    hi all i was reading through the thread and find it really helpfull and encouraging my 9 month old was born at 37 weeks via c section weighing 1.650 kgs she was in NICU for 6 weeks she had no problems other than very low weight genetists suggested an array test wich is a very detailed gene study after 8 weeks we find out that she have rss she weighs now 4.3 kgs and 56 cm in heights at 9 month old is anyone here have a rss baby as its very rare genetic disorder especially in australia
    Hi layali
    I saw your postand although I'm not on this thread I wanted to reply. My daughter was measuring small all throughout my pregnancy but she was diagnosed with a complex heart condition so we just thought it might be that. Though we always knew there might be other issues. Anyway, cutting a long story short, we had genetic testing done and she was diagnosed at 4 weeks old with smith-lemli-optiz syndrome. Also a rare genetic disorder... I dont know much about RSS, but my DD is very little... still wearing some 6month old size or 00 clothes at 12 months old! She has a variety of other issues with feeding and slow growth, her heart condition etc. But getting the diagnosis early meant early intervention. Anwyay... I dont know exactly how you feel but have a bit of an idea, and also found it hard to find support because its rare...but facebook has great for that. Anyway, I hope you are okay, feel free to pm me if you need a chat. Hugs..

    Sent from my GT-P5220 using The Bub Hub mobile app

  6. #205
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    Hi Tamtam thanks for replying to sorry about your little one hope she gets better with times my daughters main problem is feeding at the moment shes got very poor growth she still in 000 at 9 months but what worries me the most is the future as i got told she wont be taller than 140 cm n thats really short sometimes i find it really hard to cope i have very little or almost no support .
    i really appreciate ur reply n hope the best for ur little one

  7. #206
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    Hi, my baby was born with iugr. Does anyone know a private facebook support page please. Thx

  8. #207
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    Hey JDK, I actually don't know if a group on fb exists... I'll let you know if I come across one, or perhaps others might know

  9. #208
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    Default Facebook page

    IUGR babies is a closed Facebook group, lots of mums of IUGR babies from pregnant Mums to Mums of 10 year olds.

  10. #209
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    Thanks guys I will pm my name incase you are member, pls invite me

  11. #210
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    There's a FB page, called IUGR babies and IUGR support group - it's international. Also, they just created an Aussie one - called Aussie IUGR support group. Just search and see if you can find them, and request to join.


 

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