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  1. #11
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    Default Has anyone kept their edwards syndrome baby?

    Hi allymumtobe, I just wanted to offer you a big virtual hug. We were in a thread together a few months back. I'm so sorry that you have such a difficult decision to make. As a few previous posts have mentioned maybe some genetic counseling would help? Xox

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    I just wanted to say I'm thinking of you and I'm sorry you are facing this xoxoxo

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    Default Re: Has anyone kept their edwards syndrome baby?

    My baby was high risk for t18. We had an extra u/s at about 18 weeks to look for the soft markers, but it came back clear. Didn't do the amnio, but every day I wonder if we should have. I've done a lot of reading up on it. I have opted for no medical intervention if the baby has it. Only pain relief. If you want someone to talk to pm me. I'm due in just over 5 weeks.

    Also have a look at SOFT (I think its that). On fb their cover photo is a rainbow. They have a lot of support for people that have to make this choice.

    You are in my prayers. Big hugs. Hope you make the best decision for you and your family

    Sent from my GT-I9100T using BubHub

  4. #14
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    Allymumtobe is offline Winner 2012 - Most Optimistic Poster
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    Default Has anyone kept their edwards syndrome baby?

    We know our baby has T18 our only hope is that it might be mosaic and therefore less severe but I know I'll probably have to say goodbye

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    Siaye  (14-07-2014)

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    Default Has anyone kept their edwards syndrome baby?

    Ally I'm so sorry you are going through this. I'm thinking of you and sending hugs and love x

  7. #16
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    We had high risk of T18 and had done our research on the syndrome and had decided to definately terminate if the amnio confirmed it. For us it wasn't a hard decision to make, it was a sad one. Bub got the all clear in the end.

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    Default Re: Has anyone kept their edwards syndrome baby?

    Hi Aly. Just wanted to give you a huge hug xxx I think the genetic counselling is a good idea, this is a hard decision to make. I will have everything crossed that the mosaic comes back with the result you are hoping for xx

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    Default Has anyone kept their edwards syndrome baby?

    Ally I recall cycling with you last year at some stage. I'm so sorry you have to go through this. Sending you big hugs

  10. #19
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    Default Has anyone kept their edwards syndrome baby?

    Hi I recognize you from ivf groups. I am so sorry you are going through this.

    We were 1:2 for T18 and our fish was negative and full results also. however our beautiful boy was diagnosed with fatal abnormalities of the kidneys and lower urinary tract obstruction and he wouldn't survive to 20 weeks which would be tomorrow we had to make the horrendous decision to terminate because they wanted to start biopsy of his kidneys and draining his bladder every two weeks from 16 Weeks which would be so terribly painful for our little man and he had no chance of survival and no way to medicate his pain for those procedures.

    I am beyond heartbroken and regularly a mess but 7 weeks out i am starting to feel hopeful for the future and we are starting a new cycle end of this month. I am here should you need me pm anytime xxx huge huge hugs.

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    Default Has anyone kept their edwards syndrome baby?

    Bellavista I am so very sorry for your loss. What a heartbreaking story. So sorry for your little man xx


 

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