[tri-med] Re: Erin, articles to support bringing a child to term and ongoing support

Erin,
Here are some more articles that give a more positive light on handling a
trisomy diagnosis--
When I find them I add them to one of Natalia's pages
http://www.thehealingpowerofprayer.com/genetic.htm

ThereseAnn

On 1/28/06 10:33 AM, "Erin Maurer" <ekmaurer3@xxxxxxxxxxx> wrote:

> 
> 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
> 

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

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