[tri-med] Re: (no subject)

Michelle
Thank you for replying, I live in Northern Ireland so my options are limited 
and I have already been to my nearest hospital and the main hospital in Belfast 
but they both had the same attitude that their policy is to "let nature take 
its course" as the doctors have all said there is no hope for my baby and it is 
not their poliy to interveine which I am finding hard to accept.  

Denise 




________________________________
From: jwaite <jwaite@xxxxxxxxxxxxx>
To: tri-med@xxxxxxxxxxxxx
Sent: Tuesday, 19 May, 2009 11:36:57 AM
Subject: [tri-med] Re: (no subject)


----- Original Message ----- 
From: "DENISE DEVLIN" <denisedevlin@xxxxxxxxxxxxxx>

> My unborn son has been diagnosed with trisomy 18 and a congenital 
> diaphragmatic hernia and I have been told nothing can be done, he will not 
> be incubated to keep him alive and there is no hope. I can find no details 
> of similar cases and wondered if anyone could give me any information.

Hi and Welcome to you Denise!
Glad you found us but sorry you have a reason to.

First up, congrats on your pregnancy with your son.

Secondly, take a deep breath and realize that NOBODY can tell you EXACTLY 
what is going to happen with your son. He is a unique individual and there 
will be NO OTHER exactly like him in the world. Your little man will write 
his own story, chapter by chapter.

Next, YES there are survivors of trisomy 18. Sadly this is more the 
exception than the rule but it DOES happen. To write someone off simply due 
to the diagnosis is wrong!

In what country/area do you live? It sounds as if you need to doctor shop to 
find one will is willing to be proactive for you and will meet your wishes. 
You might even need to find a different hospital. Somebody, someplace to 
just give your son a chance.

We didn't know about our son's trisomy 14 until after birth so we didn't run 
into issues that those with prenatal diagnoses do.
Some folks on these lists had 'birth plans' with their wishes, prev 
discussed with their medical team, laid out on paper. I'm sure some of those 
folks will share with you if you wish.

Also, keep in mind that while you are dealing with t-18 there are many 
flavors of the 'rare' trisomies represented here but many people have the 
same stories/situations with a wealth of info, suggestions, ideas and 
support.

Michelle mom to Alex (21, partial trisomy 14 mosaic) and Molly (18)
MichiganUSA 

                  Building ___ooOOoo__ Rainbows
                      www.trisomyonline.org
                  Families Helping Families On-line
                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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