[tri-med] Re: We Need Volunteers For A Rare Trisomy Parent Advocacy Panel...


Larry,
I know what you are saying is for the most part true, but a bit of a
generalization.  There are drs. willing to treat kids with t18.  When
Morgan was born we didn't even have to go searching for drs. they were
right there for us.  He had esophageal atresia and t.e. fistula.  After he
survived the first week something had to be done for it.  The drs. gave us
our options and told us the decisions were entirely ours and they would do
whatever we wanted.  I have to say, at that point it was almost a reverse
of what you are talking about, I wanted someone to give me advice or tell
me what to do.  Morgan was treated rather aggressively, he had a limited
dnr at birth, he could not be bagged due to the fistula and the drs. told
us they didn't want him on the vent (that was the one time they did
something like this) and we agreed at first, but later when we wanted the
dnr removed they did it, no questions asked.   




"We are the music makers.  And we are the dreamers of the dreams."   Willie
Wonka

--- Holly, wife of Mike, mom of Morgan (5 yrs.) unbalanced translocation
t18q+ and 9p-
    Des Moines, IA
    http://www.geocities.com/hmmmcormick   


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

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