[tri-med] Re: (no subject)

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
> 

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                       www.trisomyonline.org
                  Families Helping Families On-line

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