[tri-med] Re: looking for heart surgery info

I lurk around alot as I am a nurse working with lots of disabled children and 
adults, and want to know the parents point of view also. I am also currently 
working on a Master's in Medical Ethics. I just want to say I am glad an ethics 
commitee is involved and doing their job...leaving the choice with the family, 
but supporting also. I am also very happy to hear the medical profession has 
finally learned to stop making all the decisions and stepping back after 
getting the family in touch with other parents that are in the know. Only you 
as a parent can give the inside story. Good for you, and the families you are 
helping. 
 
Ann> To: tri-med@xxxxxxxxxxxxx; tri-family@xxxxxxxxxxxxx> Subject: [tri-med] 
looking for heart surgery info> Date: Fri, 18 Jul 2008 11:19:20 -0400> From: 
stamtorch@xxxxxxx> > Hi all,> > It has been a long time since I have written.? 
I have been in lurk mode for awhile.> > I am about to be contacted by a family 
that has a newborn who was scheduled for heart surgery until the genetic tests 
came back showing T-18.? Now the hospital "prefers" not to operate.? The ethics 
committee would "prefer" that the family decide.? The parents are being given 
my home number to talk to someone who has a child with T-18.? My son, Michael 
is mosaic and has really been doing so well.? He did not have any heart issues 
but did have surgery for TEFistula and EAstrisia(sp?) repair.??? > > Any 
information you could get to me would be appreciated.? I do not know much about 
the baby other than surgery was scheduled until they discovered the T-18.? > Of 
course to me , if all else seemed ok with the baby and he was healthy enough 
for surgery, a diagnoses of T18 should not stop it.....but then again I am not 
a "professional" so what do I know.?? > > The family is in Westchester in NY.? 
Thanks again for any help you can offer.? > > I will be back with a family 
update soon.> > > > > > ?Blessings, > Monica > > homeschooling Mom to AJ (13), 
Christine (10), Mary Elizabeth ^l^, Michael (age 6, Trisomy 18 mosaic AKA 
Edward's syndrome) and Birgitta (age 5, adoption finalized 2/1/05 !!, Trisomy 
21 AKA Down's Syndrome, Fetal Alcohol Syndrome, Autism, SID)> > > Building 
___ooOOoo__ Rainbows> www.trisomyonline.org> Families Helping Families On-line> 
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