[tri-med] Re: Karen

The other option is to speak beforehand to your hospitals ethics committee.
Speak to them as I have indicated - that you are being realistic, that you
don't have "false" or "romantic" hopes. And back it up with journal articles
from reputable medical publications - like the Carey and Batey articles
which not only indicate that there are survivors, but what can be expected
developmentally. If you don't have copies of these I can email or fax them
to you.

Karen,
Can you email me those journal articles you spoke of.  I would really
apprecite it.

Erin
-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx
[mailto:tri-med-bounce@xxxxxxxxxxxxx]On Behalf Of Karen
Sent: Thursday, January 26, 2006 5:49 AM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] Re: doctors


> ----- Original Message -----
> From: "Erin Maurer" <ekmaurer3@xxxxxxxxxxx>
>> I can doctor shop as much as I want within my insurance plan.  But I
> cannot
>> exactly neonatologist shop.  After the birth the OB will not have any say
> in
>> what interventions take place.

Actually you can shop around for a neonatologist if you really want.
Hopefully Ceci will pop in and tell first hand how she managed to find an
understanding neonatologist. (we went through this with Ceci on the list -
and I admired he strength and ingenuity so much) But I will give you a
condensed version of a few ideas. Its actually more important to find the
neonatologist than any other doctor.

Your OB is right - many neonatologists wont consider treating our kids
however most hospitals do have a few who will IF (and the emphasis is on IF)
they believe you to understand the whole scenario - and that is 1) that you
understand how severe the condition is and that even if they do all that
they can it may not be enough and 2) that you understand the consequences if
your child survives.

In that regard your birth plan and requests should indicate that something
along these lines - "we want everything done to resuscitate and allow my
baby to live so that his/her actual problems and what may need to be done
can be fully assessed before any decision to withdraw or withold treatment
is made" You need to customise that of course - eg to resuscitate with
oxygen and manual compressions, but not with any equipment - or whatever
your limits are.

To find the neonatologist before hand speak to your local "right to life"
people, they usually have a list of sympathetic neonatologists that can be
called in to either treat, help you negotiate treatment or advocate for
treatment.

The other option is to speak beforehand to your hospitals ethics committee.
Speak to them as I have indicated - that you are being realistic, that you
don't have "false" or "romantic" hopes. And back it up with journal articles
from reputable medical publications - like the Carey and Batey articles
which not only indicate that there are survivors, but what can be expected
developmentally. If you don't have copies of these I can email or fax them
to you. There are more recent articles which are not so favourable for
intervention - but if they draw on these to argue against intervention you
can always draw on Dr Carey himself to advocate and get into the technical
flaws of the not so favourable articles.

Its really important to find the neonatologist beforehand and not leave it
to be argued after the birth - often you are fighting against time to have
that initial intervention in place. You dont have the time needed to draw in
the ethics committee at that point.

Remember too that legally the doctors have the right to say no treatment,
even if you want treatment to go ahead. Its not a point that I necessarily
agree with but its the reality. Doctors decide quality of life - not us. You
can argue against a hospital stopping treatment in court (if you have time)
but you cant actually make any individual doctor treat if they don't want to
(otherwise drug addicts could demand a doctor give them heroin, or people to
demand operations that they dont need etc etc)

"We come to love not by finding a perfect person, but by learning to see an
imperfect person perfectly"
Sam Keen

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (11 years, T-18 Mosaic)
http://members.optushome.com.au/karens

                  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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