[tri-med] trisomy 18 do not live (long)

April, I have always found that the lippencott books are excellent, you will
find info there that is of great help and up to date, I tried to get into
there site and see what they said about t18 but had some trouble and ran out
of time.  I think with the books its  a case of that we are the rare cases
and when they write medical books they look at the norm. I know that for us
living in the trisomy fun park, this is our norm and when we go to
conference we see so many triers that we begin to believe that they all live
because that is our normal :0) sadly I think we are the lucky ones and the
stats are probably right :0( and I guess that text books go with the norm,
mind you I agree that I really hate reading in a book that my daughter
should have died at birth ( she is almost 11 yrs old)  I have talked with
geneticists. sent pictures and emails, in a way I feel they don't want to
know about us, I think they see us as the exception and continue to tell
people prenataly diagnosised that these kids will die, which will either
cause them to terminate or to continue the pregnancy thinking that they will
have the baby ( sparing them the decision since the baby will die)
fortunately or unfortunately many of our triers don't die and live long, I
say this because some families may choose not to terminate because the
outlook is so bad, and the doc's do a disservice because some families may
not relize they are signing up for many years of care when they thought the
baby would die,    causing hardships to the families expecting the babies to
die, there has been alot in our Toronto canada papers recently regarding
abuse in group homes for the disabled, which is probably why I  am rambling
but I feel that if people are not given all the info they truthfully can't
make informed decisions and in some instances that leads to the group homes
that mistreat our kids.



Don't fight with dragons for you are crunchy and good with ketchup (
dilbert)


Susan mom to Rebecca t18m age 10 and Mark ADD/LD age 9
Newcastle ON Canada
hardyboys@xxxxxxxxx



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

Other related posts: