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

Hi Lisa,
   
  I didn't know my daughter Jill had Trisomy 13 until she was born.  She lived 
for 18 days.  I wouldn't give those 18 days away for anything in the world.  I 
got to hold her and kiss her and breathe in her very essence.  It was not my 
choice that Jill died, and  I would give anything to have her with me again
   
  We never wanted Jill to suffer.  Of course.  What parent would?  Jill didn't 
suffer really.  She was uncomfortable with gas pains, but I'm pretty sure that 
was part of her condition.  Jill's death was full of agony and sorrow for us, 
but I'm pretty sure it was peaceful for her.  I will never forget her.  She is 
my most precious, innocent little love.  I'm so glad to have had her in my life 
now and forever.
   
  Ruth (Jillian's Mom (2/9/06 - 2/27/06)
  www.livingwithtrisomy13.org/memoriesofJillian.htm
  
lisa potash <lpotash@xxxxxxxxxxx> wrote:
  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


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www.trisomyonline.org
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                  Building ___ooOOoo__ Rainbows
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                  Families Helping Families On-line

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