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

On 10/29/06, 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.

Hi Lisa, I am so sorry you have to be here, but for your situation, this is
definitely the best place to be!  This list has been a Godsend for most, if
not all of us!!!!!



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 don't want to push my own personal beliefs onto you, but I do want to say
that this is definitely the normal doctor response.  I would bet pretty much
everyone who had a prenatal dx, got this very same response.  You need to
make your OWN decision, whatever that may be.  I think some parents actually
think they really have no choice, because their child will most likely die
anyway, but that is not true!  First of all, they may not die, second of
all, no one can force you, or should push you towards any decision.



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.



I hate this response...the baby will most likely not know you....that is so
not true.  They said that about my Caroline who has a partial trisomy 17.
Her condition is SO rare that I got all the same answers you did.....won't
live, will suffer, won't recognize us, ruin our lives, hard on our marriage,
etc etc etc.  It is sometimes VERY hard, but not always!  She is severely
affected, she did have a hard first year and still has many issues, but she
definitely knows who we are, she smiles, giggles, sits on her own for a
little while, and is still here 3 1/2 years later.  It is sometimes a tough
life, and one I thought I could NEVER handle, but we do and have become a
stronger family because of her!  Many days, our lives are fairly "normal"!

I can't help you on the mosaic questions because Caroline is a full partial
trisomy, although I have learned over the years how incredibly different
mosaics can be.  There is NO way to predict.  Some you wouldn't even know
had a chromosome disorder, others obviously face severe problems.

This is a very scary time.  Don't get too caught up in all the statistics.
If the ultrasounds aren't showing any issues, it may be a sign there aren't
many issues,  - not just a sign that the bad things are "internal", whatever
that means.  Caroline had MANY findings on the ultrasound - low set ears,
possible severe heart issue, small chin, small gestational size.  They were
wrong about the heart, but right about others.

Take care and please feel free to ask any and all questions!!  We are all
here for you!!!!!
-- 
Irene
Christina (5), Caroline (3 with partial trisomy 17p) and Kallie (1)
Caroline's site:  http://www.caringbridge.org/visit/carolinesmith

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

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