Trisomy 18 - Edwards syndrome - Trigger Warning

[calpheepip4]

Hi I live in NSW and my daughter born in November 2011 has Trisomy 18. I am happy to help and also suggest you have a look at Soft USA, Soft Australia and there are heaps of others Pm myself, Rachel and Ally and we can give you lots of great information
Colleen

[cuddlefish]

Hi
my name is Tracey and I am the co-founder of SOFT Australia (Support Organisation For Trisomy 13/18 and related disorders in Australia) we have a website www.trisomyaustralia.com and also we are on facebook all our contact details are in there and we have members all over Australia.
Primarily our members children are affected by trisomy 13 or 18 but we do have trisomy 9 and various other variations represented. I am more than happy for people to contact me with questions or to request literature.

[Kiplusthree]

Hi Tracey. I will get in contact, thank you for this message x

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[ameliahope]

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

We lost a precious little one to trisomy 16. It's the rarest chromosomal problem that can happen. My obgyn had only ever read about it in medical journals.