[tri-med] Re: (no subject)

----- Original Message ----- 
From: "DENISE DEVLIN" <denisedevlin@xxxxxxxxxxxxxx>
 I have already been to my nearest hospital and the main hospital in Belfast 
but they both had the same attitude that their policy is to "let nature take 
its course" as the doctors have all said there is no hope for my baby and it 
is not their poliy to interveine which I am finding hard to accept.

{{{{Denise}}}}

There is always hope.

Unfortunately the medical profession works off of old and inaccurate 
information on the rare trisomies. There's not much new and updated out 
there for them.
There is a group, TRIS, trying to put together info to help change that so 
that doctors/med professionals have a more accurate view of our special 
kids. Some of us here on these lists have actually helped by filling out 
survey/info on our kids. They may be able to help hook you up with some info 
for your doctor.
http://web.coehs.siu.edu/Grants/TRIS/
Other folks have suggested SOFT and that's a good way to go as well.

While it's not their policy to 'intervene, do they offer comfort care?
If so, how far does their comfort care extend?

Are these hospital rules or drs rules?
If you found a doctor who is more sympathetic to your wishes and willing to 
be more proactive for your son, could they do that in a hospital setting?

Michelle mom to Alex (21, partial trisomy 14 mosaic) and Molly (18)
MichiganUSA 

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

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