[tri-med] Re: New folks on the list

Hi Denise and Pamela,
 
It is absolutely true that every child's outcome is different. That being said, 
I think it is crucial to have hope. We did not have a prenatal diagnosis with 
our son, Zane. But after he was born, we were told that he would live no longer 
than two months. He is now 2 1/2 years old with a diagnosis of full Trisomy 18. 
 
Never give up hope for your sons. You are their biggest advocates in this 
world. 
 
Susan
--- On Mon, 6/15/09, Jocelyn <jknowd@xxxxxxxxxx> wrote:


From: Jocelyn <jknowd@xxxxxxxxxx>
Subject: [tri-med] New folks on the list
To: tri-med@xxxxxxxxxxxxx
Date: Monday, June 15, 2009, 11:49 PM


Hi Denise and Pamela,

Dennette Suhadolnik's son Dylan is a surviving male with Trisomy 18. 
He is about 13 now I think. He was our "flagship" in the early days 
of Tess's life. Dennette rejoined the list recently. Every child is 
different and there are no guarantees about what will happen and I 
would not want to give anyone false hope, but the fact is there are 
some surviving boys out there.

At 12:23 AM 16/06/2009, you wrote:
>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
>
>
>
>No virus found in this incoming message.
>Checked by AVG - www.avg.com
>Version: 8.5.364 / Virus Database: 270.12.69/2176 - Release Date: 
>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




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

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