[tri-med] Re: (no subject)

Thank you for the information, it helped out.
Pamela
----- Original Message -----
From: Barbara Farlow <b_farlow@xxxxxxxxxxx>
Date: Monday, June 15, 2009 10:42
Subject: [tri-med] Re: (no subject)
To: tri med lists <tri-med@xxxxxxxxxxxxx>

> Hello, 
> 
> I like to put this article "out there" every once in a while so 
> that the newcomers might have a chance to understand the way 
> docs think about tri13/18. 
> 
> Two of the authors of this article are leading ethicist/MDs in 
> the United States. 
> 
> I hope it will be of help. 
> 
> http://livingwithtrisomy13.org/Koogleretal.pdf
> 
> Barb 
> mom to Annie
> 
> > Date: Mon, 15 Jun 2009 10:23:24 -0400
> > From: epnapier@xxxxxxxxxxxxx
> > Subject: [tri-med] Re: (no subject)
> > To: tri-med@xxxxxxxxxxxxx
> > 
> > Hi Denise,
> >   I am new to the list as well.  My sweet baby 
> boy, Hunter Brice, was diagnosed with Trisomy 18 on May 
> 14th.  I am 33 weeks and they will deliver him at 37 
> weeks.  All the docs here in Louisville, Ky. have the same 
> opinion that if he makes it to delivery he will not live very 
> long.  It's been a hell month for us, as  I am sure 
> that it has been for you.
> >   Seeing the e-mails on this list with everyone's ( 
> t18) kiddos and how old they are has giving me a glimpse of 
> hope.  Though I am cherishing every kick and moment that he 
> makes while I have him.  He is due July 14 and we can not 
> help but feel like it's Hunter's count down to the end.  
> Again seeing the ages of these sweet kids is making it a little 
> easier on me.  Plus he is a very active little guy, I hope 
> that it may be a sign that he is a fighter when he comes.
> > You're in my thoughts,
> > Pamela 
> > 
> > ----- Original Message -----
> > From: DENISE DEVLIN <denisedevlin@xxxxxxxxxxxxxx>
> > Date: Monday, June 15, 2009 6:04
> > Subject: [tri-med] Re: (no subject)
> > To: tri-med@xxxxxxxxxxxxx
> > 
> > > 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
> > > 
> > > 
> > 
> >                   Building ___ooOOoo__ Rainbows
> >                        www.trisomyonline.org
> >                   Families Helping Families On-line
> > 
> 
> _________________________________________________________________
> Windows Live helps you keep up with all your friends, in one place.
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>                   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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