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  1. #21
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    Default Has anyone kept their edwards syndrome baby?

    Ally I just wanted to add that it was my 5th loss and the choice to make wasn't easy but for us it came down to causing our little Noah pain and I couldn't do that and his prognosis was so grim that it was cruel my GP was in tears as was my psychologist with me making the decision.

    I never thought I could do that I still can't believe I did and I find it very hard to get past but the support medically and mentally I have had reassured me that I did the best thing for my baby and I would rather feel pain and hurt then my baby

    I am so sorry I am tears for what you must be feeling and thinking x

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  3. #22
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    bunkx is offline Being happy doesn't mean that everything is perfect. It means that you've decided to look beyond the imperfections
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    Default Has anyone kept their edwards syndrome baby?

    hugs I'm so sorry you are going through this

  4. #23
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    almai is offline "you never know how strong you are until being strong is the only choice you have."
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    Default Has anyone kept their edwards syndrome baby?

    I don't know what it's like to deal with T18 but when I was 12weeks pregnant with my baby 6 years ago they found abnormalities with his tummy, I had an amnio and all was clear but they said his physical abnormalities were so bad he wouldn't survive life. I saw him kickig and moving around on the screen so i couldnt believe it. I had some councelling but I felt like everyone was just forcing me to terminate and at 16 weeks I gave birth via induced labour.

    They then found out that my baby was infact 2... Conjoined twins... Apparently neither would have survived anyway but I always regret my decision to end it without knowing everything. And for me, the drs were wrong....

    My heart goes out to you in this terrible time and I hope that you can get as much information and support as you can to make a decision that is right for you.

    Big massive hugs xxx

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  6. #24
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    Default Has anyone kept their edwards syndrome baby?

    Oh Bella and almai

    I'm so sorry for everyone that's been in this heartbreaking situation

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    My heart really goes out to you Allymumtobe. I know what it is like to receive that "bad" news - in our case not T18 but T12p, which showed up on a microarray.

    There is a very active facebook group called "trisomy families" that I came across whilst going through our ordeal. It is a closed group so you need to request to join but if you are looking for hope or just even a better insight into what life is like for a child with T18 and their family I would recommend it. It's for anyone who is dealing with trisomy in their family or has received a prenatal diagnosis of trisomy but I find most of the ppl on it are dealing with T18 or T13.

    I might add that we chose to terminate (I hate that word). Reading the stories and messages on "trisomy families" can sometimes be difficult for me as they are mostly from ppl who have chosen to continue with their pregnancy or from ppl who never received a diagnosis before birth. If you can handle it though it does offer a different viewpoint from "incompatible with life".

    Wishing you strength and peace with whatever decision you make.

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    Bubbles10  (07-01-2013)

  9. #26
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    Allymumtobe is offline Winner 2012 - Most Optimistic Poster
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    Default Has anyone kept their edwards syndrome baby?

    So sad this morning this is a nightmare I don't want to give up on my baby but the stories are so vastly different one makes me want to continue and another makes me terrified to continue.

    We were so ready fora baby so much TTC then IVF then a mc and now when it felt like our miracle was within reach its all just gone

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    Default Has anyone kept their edwards syndrome baby?

    I just done some research on this and a baby born with this condition faces a terrible ordeal as you must know. I am so sorry you need to make this decision. No one should have to chose. My heart goes out to you. I know what I would do in your position. :'(

  11. #28
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    Default Re: Has anyone kept their edwards syndrome baby?

    I know of a few mums who have kept them and they passed before birth, however we just had friends have a baby that had mosaic Edwards syndrome last week, baby is still living but the out look isn't that great.

    Myself, I would keep the child till it passed naturally.

    Sent from my Nexus 7 using BubHub

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    SoThisIsLove  (07-01-2013)

  13. #29
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    Eko is offline Acrobatic Dominatrix.
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    I just wanted to say that I'm so sorry that this has happened to you, it's an awful situation. I wanted to wish you strength no matter what you decide .

  14. #30
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    Default Has anyone kept their edwards syndrome baby?

    My mum kept her baby, it was a terrible ordeal, she lived for about 10 weeks, she was a tiny dear little baby. She just bought her home and was told to make her comfortable, this was over 20 years ago. It was agonising to see her knowing her condition wasn't compatible with life. There is no right or wrong decision here and I am so sorry you are facing this. So much love for you and your family.

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