[tri-med] SOFT IRELAND

I think our list Mum is "out of action" at the moment. But years ago 
she used to send me the Irish web site. I'm sure if you google SOFT 
Trisomy - Ireland, you will get something. My husband is Irish (well 
52 years ago we came to Australia).

At 08:04 PM 15/06/2009, you wrote:
>Hi Susan
>Thank you for your reply.  Unfortunately I live in Northern Ireland 
>so finding a good doctor has proven very difficult.  I am still 
>trying and staying as hopeful as I can but my son was also diagnosed 
>with a heart defect 2 weeks ago so every piece of news we get just 
>makes matters worse and so far the doctors locally have all refused 
>him any help to survive. They are so sure he will not be born alive 
>that I am increasingly angry with them all.  I have to believe they 
>are wrong and they dont know everything and we will get to spend 
>some time getting to know him.
>
>Thanks again
>
>Denise
>
>
>
>
>________________________________
>From: G&S <hardyboyz@xxxxxxxxxxxx>
>To: tri-med@xxxxxxxxxxxxx
>Sent: Sunday, 7 June, 2009 6:37:50 AM
>Subject: [tri-med] Re: (no subject)
>
>
>
> > 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.
> > Many Thanks
> > Denise>>>>>>>>>>>>>>>>>.
>
>
>
>Welcome Denise and so sorry to hear of you sons diagnosis.  While T18 is not
>necessarily fatal when they are looking at that with the diaphragmatic
>hernia they are less likely to be grim. What you need to do is find a
>neonatologist at a level 3 hospital that believes these kids can live. Sadly
>to say if you are in Ontario Canada that is not likely ( I only say this re
>recent discussions with a neonatologist re the care of my deceased daughter
>who had t 18  ) if they can fix the defects these kids can live!  Rebecca
>was 14 1/2 years before she died and we loved her every minute  !  she also
>had a profound effect on many and was actually a maid of honor at a wedding!
>
>
>
>Susan Mom to Rebecca T18 M 6/6/91-5/2/06 and Mark ADD/LD age 16
>
>
>
>
>                   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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>06/14/09 17:54:00



Jocelyn,  wife to Frank,  Mother to Ian, Gillian and Susan, Nanna to 
Carly 22  Mathew 20,  Ashleigh 19, Alex 17,  and Tess  (Trisomy 18,) 
age 12 yrs,  & Benny the Maltese, plus one amazing DIL and two 
amusing SIL's of whom I'm very fond, and their extended family who 
are too many to list here.   

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

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