[tri-med] Re: Full Trisomy 17

Have you asked the children's hospital to refer you to an OB-GYN?  They 
should know plenty of doctors that would help you with delivery.  Can any 
doctor "legally" deny delivering your baby???  I know nothing about T-17, 
but I have never heard of anyone being denied delivery of their child.  You 
need to seek legal counsel right away, as I believe you are being 
discriminated against.  Obviously, you want an experienced (T-17) doctor to 
deliver you baby, but if there is not one available it is not your fault.  I 
pray that you find a resolution.  May God Bless You and Your Baby.
Tammy (Mommy to Cayden T-8 Mosaic)

----- Original Message ----- 
From: "Lace4Blitz" <Lace4Blitz@xxxxxxxxxxx>
To: <tri-med@xxxxxxxxxxxxx>
Sent: Monday, July 14, 2008 9:46 AM
Subject: [tri-med] Full Trisomy 17


>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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