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Thread: Trisomy 18

  1. #21
    Loula's Avatar
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    Oh Kate

    I'm so sorry to hear your news . I remember only too well what a distressing time it was, and can imagine some of what you are going through. Feel free to PM me if you would like to chat more, and debrief about anything, I have a great listening ear.., and I will check in over the next few days...

    Lou
    Missed m/c 11wks '03
    DD1 10yrs old
    Missed m/c 9wks '05
    DD2 8yrs old
    Angel DS 13w5d, May '08
    DD3 5yrs old
    Missed m/c 10wks '11
    DD4 May '13

    *Please do not reproduce for FB*

  2. #22
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    Quote Originally Posted by KMGG View Post
    Hello,
    Thanks to everyone who shared their stories. We have just had the CVS and it has come back positive for Trisomy 18. I was quickly booked in for a termination so luckily due to Christmas I have 4 days to clear my head and try to understand it all. Though I don't think it will be any easier. What has been great, is reading your stories.
    Kate
    I am so very sorry to read of your news. Much love to you & thinking of you during this most difficult time, as Lou said we are here for you anytime Hon. XXX
    "Think occasionally of the suffering of which you spare yourself the sight."
    Albert Schweitzer

  3. #23
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    Kate I am so sorry to read your news...the if's, but's, why's can inevitably catch you off guard though was is a very traumatic time. What makes it a little easier to handle is knowing that you arent alone and that the girls in this forum will jump to help, listen and be a shoulder to cry on. Biggest of hugs to you babe and if you need anything at all we are here.

    Love Lorrie
    xxx
    "Be mindful of the future..but not at the expense of the moment"
    - Qui-Gon Jinn, Star Wars Phantom Menace

    Lorrie 35, Danny 36, DD Jade 4 and DS Zeke born 19 April 2007 He's 1
    Angel 1991, Angel 28th May 2002 @ 12 Weeks
    Our Daughter Lily back with the stars 4th May 2006 @ 15.5w

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  4. #24
    eire's Avatar
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    i'm sorry too kate and shefs. glad to hear harry that your friend's bubba is all healthy tho.

    just for those who were interested - my SIL had her first born with Trisomy 18. he only lived for an hour but they were able to bathe him which is what she really wanted and she really treasured that time.

    i really love that people are able to share their stories on here and i've learnt heaps, been encouraged etc reading thanks ladies.
    Me (27) & DH (31)

    -our country bumpkins-
    Isaac James 31/07/08
    Emilyn Rose 11/11/09

  5. #25
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    Kate, I'm so sorry to hear about your news. I'll be thinking about you leading up to your d&c and beyond.

    I recently went through a similar situation with T13 after my 12 week scan. I was (and still am) absolutely heartbroken.

    Has anyone given you details of SAFDA (Support After Fetal Diagnosis of Abnormality)? I didn't personally contact them, but was comforted to know I could if I needed to. They also have monthly support group meetings. I'm not sure if they are in every state, but I did a quickly google search and found them in SA and Vic.

    Please feel free to PM me if you want to talk, cry or anything.xx
    DD 16/11/09 (birth story)
    DS 31/01/12 (birth story)

  6. #26
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    Kate, I'm so sorry to hear your news. Thinking of you through this hard next few weeks.

    Kylie, i just watched your montage and am sitting here in tears. How very lucky you were to spend that precious time with Daniel. He was just beautiful.

    My liitle girl Ava died during the early stages of labour and was later found to have mosaic trisomy 13. No-one had any idea that it could have been a genetic disorder as she was so perfect. All of the staff were completely shocked that she died like that as her heart just stopped without warning.

    We recieved fantastic support from our hospital and even 5 of our midwives came to her funeral. I can't say the same for the obstetrician treating us. He is an absolute pig and I should have put in a formal complaint about him but anyway, that's another story.

    I found the best source of info the net and now think I know everything about genetic disorders! well, certainly much more than the stupid obstetrician who basically told us that one of us was a carrier. He'd obviously done no research at all.

    Nice to know there's a few of us on here anyway.

    Thanks for sharing girls.

    Elise
    Elise 26Heath35
    Our angel-Ava Audrey
    Stillborn-Mosaic trisomy 13 20/09/2006

    Mr Fuzzy - Fenn Warner
    30/08/2007

    The dreamy new addition-Seth Cullen
    24/06/09

  7. #27
    KMGG is offline New Member
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    Hello,
    Thanks everyone for the messages of support they really put a smile on my face. It certainly has been the worst 4 weeks of my life. Thanks also for letting me know about the SAFDA I am in Vic so will check it out.
    I was surprised that I had to do all of my research on the internet, all my obs was able to tell me was that it was T18 was no good and it was best to terminate. Who is supposed to make a decision based on that information?
    I have also since found out that the Royal Women's in Melbourne has a Genetic Counselling Service, you can find the info on their website. If anyone finds themselves in this predicatment you can refer yourself there you don't have to be referred by a doctor.
    Also if you have a CVS it is generally when you are about 12 weeks there is still time for decision making you don't have to be rushed in for a D&C straight away.

  8. #28
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    Quote Originally Posted by KMGG View Post
    Hello,
    Thanks everyone for the messages of support they really put a smile on my face. It certainly has been the worst 4 weeks of my life. Thanks also for letting me know about the SAFDA I am in Vic so will check it out.
    I was surprised that I had to do all of my research on the internet, all my obs was able to tell me was that it was T18 was no good and it was best to terminate. Who is supposed to make a decision based on that information?
    I have also since found out that the Royal Women's in Melbourne has a Genetic Counselling Service, you can find the info on their website. If anyone finds themselves in this predicatment you can refer yourself there you don't have to be referred by a doctor.
    Also if you have a CVS it is generally when you are about 12 weeks there is still time for decision making you don't have to be rushed in for a D&C straight away.
    Much love to you during this time.

    It was very similar for me as far as info goes, The specialist told me to look it up on the net & no counselling was offered.

    Wishing you all the very best in the future & when the time comes wishing you all the very best with TTC. XXXX
    "Think occasionally of the suffering of which you spare yourself the sight."
    Albert Schweitzer

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