[tri-med] Re: (no subject)

Oh, Don't get us wrong.  I'm pretty sure we've all heard ugly, mean things from 
doctors.  I know we did.  It just happened that one of the moms on this list 
serv answered her phone when I called her and asked for help.  Her daughter had 
been at the same hospital as Annette.  She's the one who told me about Dr. 
Fraser.  Before that, no cardiologist wanted to touch Annette because she had 
trisomy 18.
Annette



--- On Fri, 6/19/09, DENISE DEVLIN <denisedevlin@xxxxxxxxxxxxxx> wrote:

From: DENISE DEVLIN <denisedevlin@xxxxxxxxxxxxxx>
Subject: [tri-med] Re: (no subject)
To: tri-med@xxxxxxxxxxxxx
Date: Friday, June 19, 2009, 4:51 PM

Annette
Thank you for this information. Everything I hear from those of you on the list 
is so hopeful, unlike the attitude of the medical professionals I talk to.

Denise 




________________________________
From: Annette Oseguera <tri18412@xxxxxxxxx>
To: tri-med@xxxxxxxxxxxxx
Sent: Wednesday, 17 June, 2009 8:53:30 PM
Subject: [tri-med] Re: (no subject)

Annette was born with an ASD, VSD, and PDA.  She had open heart surgery when 
she was three months old.  At eight months, she no longer needed any heart meds.
Annette



--- On Mon, 6/15/09, DENISE DEVLIN <denisedevlin@xxxxxxxxxxxxxx> wrote:

From: DENISE DEVLIN <denisedevlin@xxxxxxxxxxxxxx>
Subject: [tri-med] Re: (no subject)
To: tri-med@xxxxxxxxxxxxx
Date: Monday, June 15, 2009, 5:04 AM

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
                  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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