[tri-med] Re: Full Trisomy 17

Hi Therese!  Thanks for visiting Caroline's site!
As you know, Caroline has a partial Trisomy 17p.  She also was given a
horrible prognosis, but is still here 5 years later.

We delivered at McGee's Women's Hospital in Pittsburgh.  Even though we were
given no hope whatsoever, no one ever refused us!  I am just shocked that
you are in this situation!!

I know Pittsburgh is about 5 hrs from you, but maybe you could call the
hospital and try to get a referral.  Maybe they know some physician in your
area who is more accommodating.  I don't have any names to give you, since I
only went there for the delivery.   However, if you want, I can do some
research and try to find at least a name at the hospital to start off.  I
would probably just start researching on their website.  But I would be
happy to try!

Please feel free to contact me either on or off list.

Take care,
Irene
Mom to Caroline (partial T17p)

On Mon, Jul 14, 2008 at 10:46 AM, Lace4Blitz <Lace4Blitz@xxxxxxxxxxx> wrote:

> A few weeks ago I emailed you all with the diagnosis that my baby has full
> Trisomy 17. I am currently 29 weeks pregnant. There has never been a
> reported live birth of a baby with a full Trisomy 17. In fact doctors are
> baffled by the fact that I am still pregnant as no full T-17 pregnacy has
> ever lasted past 16 weeks gestation.
>
> I have visited The childrens Hospital Of Philadelphia MFM as they are
> ranked
> #1 in the country for cardiology and we have found that this baby has a
> severe heart defect. This baby has a single ventricle and Truncus
> Arteriosus. I have only found 3 cases of this ever reported in live people.
> All babies with this rare disease have died shortly after birth with the
> exception of one who was succesfully treated with surgery and is now 13
> months old.
>
> They told me this baby would not live past one day if he survives to birth.
>
> I am asking anyone in this community who has any information on this rare
> disorder in infants to please email me. Doctors have given up hope and they
> will not even attempt to do the surgery due to the fact the baby has T-17.
>
> I cant even find an OBGYN right now who will deliver this baby. My OBGYN
> has
> told me I have to find another doctor as her hospital will not let her
> deliver a high rish baby like this. I have visited 4 others hospitals and
> OBGYN's and as soon as they hear my story no one wants me. I feel like such
> a reject of the medical system right now. Like I have a contageous disease
> that no one wants to catch.
>
> Anyone with any information please email me as I really dont know what else
> to do at this point. I feel so hopeless. Thank you all for your time in
> reading this.
>
> Theresa
>
>                  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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