[tri-med] Re: (no subject)

I know you feel like you are beating your head against a wall.
Claire wasn't diagnosed with a heart problem, or any other real problem,
just the amnio showing the full T18, and they didn't expect her to live...
my point is, no matter what other symptoms, even no symptoms will leave you
with doctors that think your child won't live, period.

When I showed them sites of other T18 children living, they merely stated,
'well, that isn't YOUR baby' and attempted to leave me with no hope.  When
Claire was 2 years old - they had us take her out of hospice... thinking she
was going to live for at least 6 months (hospice takes patients who are
considered dying within 6 months).  At 2, someone somewhere decided she may
'survive'... it took them 2 years!!   Claire just turned 6 years old and
some doctors are actually consider her to be thriving... imagine that at 6
years old!

It never really goes away with a trisomy 18 child... an uphill battle
against many doctors.
So if you happen to get lucky and find one that wants to learn something
from your child, rather than predict what they will do, you need to hang on
tightly to them!

You are like me, while my child is still here, I will have hope, and they
cannot rob me of that, my child will see to that!

Don't let them get you down...
Debbie, mom to Claire (T18 6 years old)

On Mon, Jun 15, 2009 at 6:04 AM, DENISE DEVLIN
<denisedevlin@xxxxxxxxxxxxxx>wrote:

> 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
>
>


-- 
______________________________________________________________________________________________________
Give a man a fish and you feed him for a day. Teach a man to fish and you
feed him for a lifetime.    -Chinese Proverb


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

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