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  1. #1
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    Default Trisomy 18 - Edwards syndrome - Trigger Warning

    Hello

    I'm not sure if this would be the most relevant spot to put this.

    My name is Ki Wolf and I write for The Bub Hub.

    Lately I've been looking into the facts and statistics of the chromosomal syndrome, Trisomy 18 (Or more commonly known as Edwards Syndrome).

    I've been putting together a research based, informational support piece for families and couples who are faced with the heart breaking news that their unborn child has Trisomy 18.

    For part of the article, I want to reach out and find families who have been through/are going through the reality of the syndrome and hear their stories so I can include some quotes for our readers describing the emotions they've gone through and how they've coped, showing others they are not alone.

    Of course I understand this is a highly emotional, personal and painful subject for those who would rather not be involved. However, if you are comfortable with sharing your story, (with whatever degree of anonymity you choose), Please contact me.

    If possible, I would also love if I could get in contact with a practitioner or psychologist who has dealt with families coping with this and has some advice they could share with others who may need mental or emotional guidance.


    Even if you are not involved, please help me keep this post visible so I can find the people I'm looking for and create something that could help those in need x

    Ki Wolf

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    Bump xo

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    Google Zion Blick.

  4. #4
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    Thanks Purple Lily x

    Schmetterling, thank you! I actually have the Zion Blick video and am featuring it in the article. It is a beautiful film which captures the situation quite well from the viewpoint of a very strong family!

    It brought me to tears, Zion was such a beautiful baby... Hoping I can find some families soon, I know it's a tough thing to talk about and it isn't going to be easy finding families who are in a place where they can feel comfortable sharing.

    Thanks to both of you for helping, It means a lot x

  5. #5
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    There is a facebook group called trisomy families whose members may be able to help. A number of their members have/had a baby/child with Edwards syndrome.

    Sent from my GT-S7500T using The Bub Hub mobile app

  6. The Following User Says Thank You to nonny For This Useful Post:

    Kiplusthree  (15-02-2014)

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    Thank you Nonny.

    I'll have a look and might send the admin a private message. It's a touchy subject and I want to be careful not to upset/offend anyone or appear to be barging in on the support group.

    In saying that, sounds like it could be a valuable lead, thanks for pointing me in the right direction. x

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    Looks like The Trisomy 18 Foundation are going to be involved

    Thank you for the idea Nonny! x

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    lovebeingamum!  (18-02-2014)

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    All of the relevant medical publications are summarized on the International Trisomy 13/18 Alliance site: www.internationaltrisomyalliance.com

    Also, Dr. Annie Janvier (Canada) has published many articles on this topic. Here is one article with open access : http://pediatrics.aappublications.or....full.pdf+html

    She's also published articles entitled: Our children are not a diagnosis: The experience of parents who continue their pregnancy after a prenatal diagnosis of trisomy 13 or 18.
    and
    Medical interventions for children with trisomy 13 and 18: what is the value of a short disabled life? (co-authored with an Australian MD)

  11. #9
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    Allymumtobe is offline Winner 2012 - Most Optimistic Poster
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    Hello. My angus was Trisomy 18 his thread is on here and also his birth story was published on bubhub. I have a blog and I'm happy to be interviewed. He was full T18 and stilborn at 30 weeks.
    Allyrogers87@yahoo.com.au


    Angus 4~6~13, loved - wanted - missed
    Barny barnacle - MMC Feb14

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    Hi I live in Queensland. My son has Trisomy 18 and just turned three and a half. Happy to Participate.
    Rachel


 

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