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  1. #41
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    heeeeerekittykitty is offline My babies, my cats ....ahhhh , bliss !!!
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    Default Has anyone kept their edwards syndrome baby?

    Oh ally i have no experience in this but I couldn't pass this without replying , my heart broke reading your posts :-(

    Wishing you so much strength and love And I hope you can get as much support as you need to make your decision xxoo

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    Default Has anyone kept their edwards syndrome baby?

    Thinking of you & your family Ally & sending all my love.

    Take your time and whichever decision you make will be the one that is best for you & your family - there are no right or wrong decisions.

    xo

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    LifeInShadesOfGrey is offline Just a little bit silly :)
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    Default Has anyone kept their edwards syndrome baby?

    I'm so sorry to hear that. Just do what is best for you all xxx

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    trisomy.org has great resources including a lovely birth plan with really practical ideas written by a mum whose babies was diagnosed with full T18 during pregnancy.

    http://www.trisomy.org/birthing-plan-trisomy-18/

    Lots of love

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    Default Has anyone kept their edwards syndrome baby?

    Quote Originally Posted by Bubbles10 View Post
    trisomy.org has great resources including a lovely birth plan with really practical ideas written by a mum whose babies was diagnosed with full T18 during pregnancy.

    http://www.trisomy.org/birthing-plan-trisomy-18/

    Lots of love
    I just read that page ad bawled my eyes out. Extra hugs to you tonight ally x

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    Default Has anyone kept their edwards syndrome baby?

    So so sad for you Ally, sending big hugs n strength xxxx

  8. #47
    Mod-Myztik's Avatar
    Mod-Myztik is offline ADMINISTRATOR
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    Default Has anyone kept their edwards syndrome baby?

    I'm so sorry you are going through this xo

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    Default Has anyone kept their edwards syndrome baby?

    I know every instinct in your body is screaming protect my baby, give it a chance. It's a horrible choice to make and both paths require so much strength.

    I can't tell you what to do, or even what I would do. But I think you should pretend its a friend whose in your situation and think about what you think she should do. Try to remove yourself and your feeling from the equation and make it a third person.

    Easier said than done, I know. Nobody will judge you what ever decision you make.

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    Default Has anyone kept their edwards syndrome baby?

    Big hugs Ally x

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    Hi Ally

    A mum on another chat group directed me to your post here.
    I have 4 children and my youngest daughter is 13 months old and has trisomy 18 or Edwards Syndrome but she has the mosaic form.
    Our initial diagnosis came from our nuchal scan and blood test - the scan was perfect the nt thickness was 2cm which is great. She had a three vessel cord and nasal bone present. My blood work combined with my age gave a risk of 1 in 15 for Trisomy 18 (Edwards Syndrome). We had an amnio and our FISH results came back perfect! Ten days later our full result showed 8 out of the 15 cells cultured with the third copy of the 18th Chromosome. So a mosaic result.
    To cut a long story short our daughter was born in November 2011 at 38 weeks due to IUGR and was 3lb 14oz (1.7kg) and perfect! Everyone assumed it was a placental mosaicism. We stayed in hospital for 2 weeks due to my high blood pressure and her small size and she came home at 1.780 kg.
    At 6 months we had her blood tested and the result was 154 out of 200 cells showed the third copy of Chromosome 18 so 77% mosaic. She is perfect though still small (6.8 kg at 13 months old) and is sitting but not yet crawling. My son didnt walk til 18 months so I am not too worried! She breastfeeds and eats solids and sleeps well and is just gorgeous.
    Please pm me if you would like to chat and I would suggest having a look at Soft USA (Trisomy.org), Trisomy Advocacy Group, Hope for Trisomy and Living with Trisomy 13 (this has info on t18). Plus there are heaps of groups on facebook both private and open - Trisomy Families, Hope for Trisomy, Soft USA, Soft Australia - heaps!
    Please do not look at the Trisomy 18 Foundation website - that lady is not popular in the Trisomy community and really does not show a positive life with Edwards Syndrome I am sure that statistically the info may be correct but in the USA because of their health insurance and lack of medicare Trisomy 18 babies and children are denied life saving surgeries for heart conditions that are found in typically normal children who do get the surgery and often these babies are not given life saving procedures at birth such as oxygen etc.
    Sending you lots of love and strength
    Colleen xx

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