[tri-med] Re: (no subject)

Hi Pamela
I am very sorry you too are in this position and I know exactly how you feel 
and how ever kick of my son brings me hope and reassurance.  Zak Anthony is due 
August 15th and we got the first diagnonis April 15th and having spent weeks 
looking for some information and hope this is the only place I have found both. 
I cant tell you how much the Mums who have contacted me have helped me these 
last few weeks so you have definitely come to the right place.  There are so 
many amazing children out there who have beaten all the odds. Hope gets me 
through each day.  I will be thinking of you also. 

Denise 




________________________________
From: Eddie Napier <epnapier@xxxxxxxxxxxxx>
To: tri-med@xxxxxxxxxxxxx
Sent: Monday, 15 June, 2009 3:23:24 PM
Subject: [tri-med] Re: (no subject)

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

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