[tri-med] Re: (no subject)

My heart goes out to you Denise. In no country should humans be allowed to
take the place of our heavenly Father who knows how long each of our days on
earth will be.  Your dr. is playing God in my opinion. He's assuming ahead
of time that he knows God's plans for your baby. Miracles can and do happen.
I am so sorry that the medical personnel are so extremely insensitive. I
know when my son was born with trisomy 12p, some of the drs. who cared for
him wrote him off as "another chromosome baby", not going to live very long
altho they did revive him when needed. Some drs. group all chromosome
abnormalities together even tho they are as different as can be. My son is
now 21 and his health improved amazingly during his first couple years. I
know this is very different than trisomy 18 as each chromosome abnormality
has its own characteristics, but it's just a testimony to the fact that the
drs. don't know everything. I just feel badly that you have not been able to
find doctors with a heart. My prayers are with you and your baby. Lisa from
NJ
On Tue, May 19, 2009 at 8:29 AM, DENISE DEVLIN
<denisedevlin@xxxxxxxxxxxxxx>wrote:

> Michelle
> Thank you for replying, I live in Northern Ireland so my options are
> limited and I have already been to my nearest hospital and the main hospital
> in Belfast but they both had the same attitude that their policy is to "let
> nature take its course" as the doctors have all said there is no hope for my
> baby and it is not their poliy to interveine which I am finding hard to
> accept.
>
> Denise
>
>
>
>
> ________________________________
> From: jwaite <jwaite@xxxxxxxxxxxxx>
> To: tri-med@xxxxxxxxxxxxx
> Sent: Tuesday, 19 May, 2009 11:36:57 AM
> Subject: [tri-med] Re: (no subject)
>
>
> ----- Original Message -----
> From: "DENISE DEVLIN" <denisedevlin@xxxxxxxxxxxxxx>
>
> > 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.
>
> Hi and Welcome to you Denise!
> Glad you found us but sorry you have a reason to.
>
> First up, congrats on your pregnancy with your son.
>
> Secondly, take a deep breath and realize that NOBODY can tell you EXACTLY
> what is going to happen with your son. He is a unique individual and there
> will be NO OTHER exactly like him in the world. Your little man will write
> his own story, chapter by chapter.
>
> Next, YES there are survivors of trisomy 18. Sadly this is more the
> exception than the rule but it DOES happen. To write someone off simply due
> to the diagnosis is wrong!
>
> In what country/area do you live? It sounds as if you need to doctor shop
> to
> find one will is willing to be proactive for you and will meet your wishes.
> You might even need to find a different hospital. Somebody, someplace to
> just give your son a chance.
>
> We didn't know about our son's trisomy 14 until after birth so we didn't
> run
> into issues that those with prenatal diagnoses do.
> Some folks on these lists had 'birth plans' with their wishes, prev
> discussed with their medical team, laid out on paper. I'm sure some of
> those
> folks will share with you if you wish.
>
> Also, keep in mind that while you are dealing with t-18 there are many
> flavors of the 'rare' trisomies represented here but many people have the
> same stories/situations with a wealth of info, suggestions, ideas and
> support.
>
> Michelle mom to Alex (21, partial trisomy 14 mosaic) and Molly (18)
> MichiganUSA
>
>                   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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