[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

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