[tri-med] Re: Trisomy 18 and heart surgery

Karen Wrote:

> ----- Original Message -----
> From: "Nanci"
> >>Would
> > this missing CC have a tremendous affect on the outcome?
>
> If I tell you that Alex has a missing corpus callosum does that help??
> ACC doesn't actually mean anything in itself. Children with ACC can have
> major problems - or none............ Plenty of so called "normal" people
> have ACC..........

YES!!!  That helps!  I knew he had a problem with it but I didn't remember
that it was missing!  I'll pass that along!

>
> I am surprised at Texas refusing the surgery though - where is our fav
> doctor there??
>

Well, she is being treated by a infant care doc as the primary doc whereas
Soleah was always Cardiology first.  I think that is making a big
difference.  I have given her the names of who I know is fair and would do
the right thing.  Hopefully, she will get to see Dr. Grifka or of the
others.  She mentioned his name and he was supposedly on the commitee.  The
last cardio doc that saw her was Morgans doc--Dr. Nihill.  So I'm not sure
what is going on . . . I wonderful if there is more to it--either a
"political" thing or maybe the baby has more going on than they are
explaining or than she is translating to me.  Lee Billingsly called me last
night and explained how he got great responce from them if little Jacob had
made it that far.  He also explained that there were two Dr Fraisers so she
may have seen the dad instead of the son (who seemed very open to treating
t-18 kids) . . . anyway, I am on it this morning and I'll let you all know
what's up.  Thanks for the help though!


> If we pause to think, we will have cause to thank.
>
> Keep Looking for Rainbows!!!
> Karen, Mum to Alex (6, T-18 mosaic)
> Sydney, Australia
> http://members.optushome.com.au/karens
> http://www.trisomyonline.org
>
>                   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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