[tri-med] Re: Request for help, please

Hi Kim,
 
I agree completely with your analysis. There is no way to rationalize 
it....once judgement begins it doesn't stop. I met a person who was very senior 
at the head office of an HMO. I asked her if their org had a policy about 
treatment for kids with tri13/18 and she fwded my email to NICU directors and 
senior administrators across the country.
 
The responses were not unkind but unanimously clear about perceived futility. 
One person mentioned that once there was a family that fought really, really 
hard for cardiac surgery and obtained it. Their tri18 died at a year. The 
consensus about Annie's case was that the communication was not good but the 
outcome would not be different. 
 
Then there is this article;
 
The title is "Lethal language, lethal decisions" published by two leading 
MD/Ethicists in the US and the subtitle states 
Although many of the congenital syndromes that used to be lethal no longer are, 
they are still routinely referred to as "lethal anomalies." But the label is 
not only inaccurate, it is also dangerous: by portraying as a medical 
determination what is in fact a judgment about the child's quality of life, it 
wrests from the parents a decision that only the parents can make.
 
(forgive me if I posted this earlier and if I did, its ok to say it twice!)
 
Then there was a very, very nice doc I spoke to who was involved in perinatal 
hospices. We spoke about the kids suviving and the very concept was totally 
foreign to her. She didn't disagree that if they seemed mildly afflicted and 
the parents wanted the treatment that it was OK.....but it just defied her 
definition of the conditions. 
 
If you look at something and determine it to be unfixable then it will be 
unfixable. Annie would have died naturally at the age of a week or two of low 
blood sugar if we had taken her home right away.
 
I don't know the answer either Kim. I think that there are some places in the 
country that are better than others, for some strange reason. Some states are 
better than others too. 
 
Barb



> From: kimihlenfeldt@xxxxxxxxxxx> To: tri-med@xxxxxxxxxxxxx> Subject: 
> [tri-med] Re: Request for help, please> Date: Fri, 19 Oct 2007 13:40:34 
> -0500> > OK, so how do we change this? I look at it this way. I believe every 
> human is worth trying to save. So if people feel that it is pointless to 
> spend money on saving kids who will not be "productive people", why do they 
> feel it is OK to spend money on drug addicts who continuously go back to 
> their addictions, alcoholics who have to have a liver transplant because they 
> killed their liver, pedophiles, rapists, killers, etc? It makes no sense. So 
> the way I am taking society, if I showed two pictures to the average person, 
> explained that the one person is handicapped both mentally and physically, 
> and the other person is a rapist and murderer, they both need a new kidney, 
> which person would you prefer to save? And they would choose the 
> rapist/murderer? That makes no sense. So the only way to change things is to 
> speak out about them. (Don't worry, I'm not yelling at you - I know you're 
> playing devil's advocate) I do tell anyone who will listen, including health 
> professional> s, about Trisomy 18. I talk about how it should not be 
> considered a lethal condition. I try to spread the word so it will get more 
> people talking. This is the way they treated people with Down's Syndrome long 
> ago. People's minds have been changed because so many people spoke out. 
> Again, I ask anyone, how do we change this?> > From: jwaite@xxxxxxxxxxxxx> 
> To: tri-med@xxxxxxxxxxxxx> Subject: [tri-med] Re: Request for help, please> 
> Date: Fri, 19 Oct 2007 12:43:19 -0400> > > ----- Original Message ----- (Let 
> me vent for a moment, please) Our kids > >are worth just as much, if not 
> more, than the average person!!! This gets > >me so irate. I am so sick and 
> tired of the doctors thinking they know > >everything and that they think 
> they can choose who is "worth" saving.> > Going to take the unpopular devil's 
> advocate position here........what you > need to remember is that the general 
> population has a large number of people > who feel the same way as the afore 
> mentioned drs.> > Look at the people on these lists whose own families 
> ignore, devalue or act > in a nasty manner to their children. Those family 
> members/friends who were > vocal, even after birth, that the pregnancy should 
> have been terminated.> > There are a lot of people who don't value others for 
> varying reasons and > there are MANY people who d> on't think that the 
> disabled are a worth what > they cost the government as they are not 
> productive and/or participants in > society. They are seen as a social and 
> financial drain with no value.> > This general feeling 'helps' the drs make 
> the choices they do in terms of > 'terminal' illnesses....it's not just a 
> medical issue but also a social one.> > If there weren't the negative social 
> mentality on this issue then most > likely there wouldn't be a medical one.> 
> They do go hand in hand.> And this is part of why more people don't get 
> outraged and vocal about > happenings such as Barbara experienced.> > 
> Michelle mom to Alex (20, partial trisomy 14 mosaic) and Molly (16)> 
> MichiganUSA> > > > Building ___ooOOoo__ Rainbows> www.trisomyonline.org> 
> Families Helping Families On-line> > 
> _________________________________________________________________> Windows 
> Live Hotmail and Microsoft Office Outlook ? together at last.  Get it now.> 
> http://office.microsoft.com/en-us/outlook/HA102225181033.aspx?pid=CL100626971033>
>  Building ___ooOOoo__ Rainbows> www.trisomyonline.org> Families Helping 
> Families On-line> 
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