[tri-med] Re: New to list-please help

we were also encouraged STRONGLY to terminate.  my daughter has full t18 and 
did not die right away like they said she would.  she is 9 years old and is 
definitely developmentally delayed (or retarded as your drs put it) and she 
for sure knows she is here!  she is very interactive socially with friends 
and family.  she is learning her alphabet at school.
no one knows what is best for your family (but you) but we choose the 
"whatever is supposed to happen will happen" approach from the moment we 
found out at 22 weeks.
jude, mom to derek-20 (copper mtn ski resort employee), kelsey-18 (going to 
unm to be a pt)
and kameron-9-full t18 (hanging out so i will never be an empty nester)
golden, colorado usa
http://www.judewolpert.com
http://home.comcast.net/~jfwolpert2

----- Original Message ----- 
From: "lisa potash" <lpotash@xxxxxxxxxxx>
To: <tri-med@xxxxxxxxxxxxx>
Sent: Sunday, October 29, 2006 8:16 AM
Subject: [tri-med] New to list-please help


> Hi- We just found out at 17 ½ weeks that our baby is positive after cvs 
> and
> amnio for trisomy 13 mosaic. We are at Northwestern which is supposed to 
> be
> the best around.  The doctors there and genetic counselors/ob's-pretty 
> much
> everyone we have talked to encourages termination.  I haven't found 
> anything
> on the web either that is helping to make our decision to proceed. We are
> planning to wait the two weeks until the culture grows and have another
> ultrasound but are told to expect confirmation only.  Our 17 week 
> ultrasound
> showed nothing which they tell us means the bad cells are probably 
> internal
> which is worse. The mosaic part makes it even harder since they say it 
> masks
> the issues and sometimes prolongs them.  As of today, I don't feel it is
> fair to try to have this baby born to just have it suffer and pass away so
> quickly. I am also afraid what effect that will have on the rest of our
> family.  They tell us that mental retardation is almost a definite so it
> doesn't sound like the baby would even know it was here.  The docs say I 
> may
> make it to term since it is mosaic.
> Any advice if you have a trisomy 13-mosaic? I am finding that it does 
> matter
> if it is 13 and if it is mosaic.  Also, any other doctors/hosp that you
> would recommend? I did get a second opinion from Evanston and it was the
> same.
>
> Thanks
>
>
>                  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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