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

Thanks, Kim for your support and your rage.
 
There was a time when infants with certain disabilities were euthanized 
immediately and those of questionable worth were kept around long enough until 
it could be determined if the were capable of pushing a broom in the streets.
 
Once the judgment and elimination process began?.there was no end to it. The 
disabled, the elderly, then an entire race of people were targets. The Human 
Right Commission was developed as a result of that atrocity.
 
The first declaration states, ?Every human being is born equal in dignity and 
rights?. 
 
Someone I have come to know at the World Health Association wrote a beautiful 
but scathing note to the Chief Coroner who had hinted that Annie?s case might 
not be in the ?public interest? for an inquest.
 
It causes me to tear up every time I read it. It is the final line that it best;
?When we dehumanize even one small baby, we dehumanize us all?.
 
Annie?s hospital had a public ethics lecture last year about the withdrawal of 
fluids from infants who are not on life support. One of the conditions for this 
act was that the infant had ?no ability to reasonably interact?. Note; not 
sick, not broken, not terminal. Just not good enough. This was calmly accepted 
by all the medical staff in the room except a physician from a rehab hospital 
for children. She asked, ?Who can judge this? There are many children at our 
hospital who you might believe cannot interact reasonably but if you ask their 
mothers, you will hear a different story?. Her comment was quickly discounted. 
There was no press interest in the lecture and no uproar.
 
It is starting again. Why can nobody see it?
 
I met a holocaust survivor a few weeks ago. She was a lovely woman, a former 
professor who is bright and active in educating about the holocaust. She 
understood my concerns immediately. We were like kindred spirits. She asked 
what she could do. Could she write a letter to someone? 
 
She added that she was old and retired and really had no power anymore. I told 
her that she underestimated her importance and ability and there was never a 
time when her voice was more important.
 
I am not sure what to do. We have letters from all of the major disability 
groups in Canada supporting our appeal for an inquest and even one from a 
senator. I am sure that the Coroner will decline the appeal because the uproar 
that knowledge of such an event might incur would not be in the ?public 
interest?. The rationale will be that after all, Annie was disabled and who 
knows if she would be alive if all transpired as it should?  Besides, there is 
a test to find and terminate such lives. Annie should not have been born and it 
is unlikely that the event could reoccur. 
 
Annie was chubby and thriving. She smiled for the first and only time three 
days before she died. She was not on life support. If we did not determine that 
surgery for her tracheal condition was in her best interests, she deserved a 
dignified death. 
 
We have no idea what was wrong with her trachea (we will never know) and we are 
not aware of any other issues of life threatening nature. We always knew that 
Annie would teach us more than we would ever teach her. Maybe this is true in 
ways we could never have imagined. Maybe she is a teacher for many people.
 
 
> > I think this is just horrible. (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. I am 
> > sorry, but they are not God. (Not to offend anyone who is not religious) If 
> > there is anything I can do here in the U.S., I am in Iowa, I will scream 
> > from the top of my lungs if I have to. Tell me what to do. This is unreal. 
> > I will stand up and fight. I am very vocal locally about how kids with 
> > "lethal genetic disorders" are treated. I will talk and tell anyone, and I 
> > mean anyone, who will listen what I think about doctors behaving this way. 
> > Again, tell me what to do and I will do it. Tell me who to contact and I 
> > will contact them. I will do whatever I can to help and get this out.> > 
> > Kim Ihlenfeldt, husband Kerry (complex balanced translocation 9, 15, and 18 
> > chromosomes), son Cameron 9 (same genetics as Dad), Cayden T-18 (12-16-02 
> > to 01-16-03), and Candace 2 (Partial Trisomy 18 and Partial Trisomy 15)> > 
> > From: anon1930@xxxxxxxxxxxxx> Date: Fri, 19 Oct 2007 10:54:39 +1000> To: 
> > tri-Med@xxxxxxxxxxxxx> Subject: [tri-med] Re: Request for help, please> > 
> > ----- Original Message ----- > From: "Barbara Farlow" > >I understand that 
> > you have a social health care system in Austrailia > also. In Canada, we 
> > have grand policies and procedures but no > accountability.>>> > Barbara,> 
> > Perhaps I can lend a hand in explaining this. I wish I was in a > position 
> > to help you with this, but as I have explained, I can't at > the moment.> > 
> > In all things there is a system - and the medical system is no > exception. 
> > Unfortunately the hospital system is intimatey entwined in > the political 
> > system, especially in those countries where their is > public health.> > 
> > Hospitals have procedures and policies in place that are supposed to > be 
> > adhered to. If they aren't the first step is an internal review, > which 
> > Barbara has done. If the hospital finds a problem (IF being the > operative 
> > word as its internal> ) about all they will do is either > change the 
> > policiy or introduce education. > > The next step is to take it to the 
> > monitoring body, which I > understand Canada has none. Here in Australia we 
> > have the Health Care > Complaints system in all states for most things and 
> > for others we > have an Ombudsmen. But even so they are severely limited in 
> > what > action they can take.> > If there is criminal action you can also 
> > take it to the police, but > they are limited because they are advised by 
> > other doctors. It is > VERY hard to get one docter to speak out against 
> > another because if > they do they face sanctions within their own 
> > profession, in short > they will never work again. If they do speak out its 
> > usually due to > media pressure or to speak out against the system, very 
> > rarely will > they condemn another health professionals action. In 
> > Barbara's case I > think you will find that its worse because what happened 
> > to Annie > happens more frequently, and under the blessings (thoug> h 
> > covert) of > the doctor more often than we care to admit.> > In the case of 
> > death the police or an individual may refer it to the > coroner, as Barbara 
> > has done. But if he makes no ruling of criminal > action there is nothing 
> > that the police can do.> > All that Barbara has left is to take the fight 
> > to her local > politician and the media, and that is where she is seeking 
> > your help. > Barbara can not take legal action herself.> > Only the crown 
> > can lay criminal charges and as the coroner has found > no criminal action 
> > in Annies death they wont. > > And there is absolutely no claim for civil 
> > action where our children > are concerned. To make a civil case there has 
> > to be a loss. Because > our children have a shortened life span and because 
> > they will > probably never earn an income there is no economic loss to make 
> > a > claim for damages there. The loss of a human life and the emotional > 
> > consequences of their death is not enough as far as our children are > 
> > concerned because t> he defenders will claim that Barbara was saved the > 
> > pain of raising a severely disabled child and only hastened the > 
> > inevitable.> > As I said Barbara's only recourse now is to urge everyone to 
> > take > this to their politicians and the media. You may not be in Canada 
> > but > thats no reason that you can't help lay seige on them for her. As a > 
> > list we have done it before (remember Chromosome Thingy).> > Anon (for 
> > personal reasons only)> > Sign up today for your Free E-mail at: 
> > http://www.canoe.ca/CanoeMail> Building ___ooOOoo__ Rainbows> 
> > www.trisomyonline.org> Families Helping Families On-line> > 
> > _________________________________________________________________> Help 
> > yourself to FREE treats served up daily at the Messenger Café. Stop by 
> > today.> 
> > http://www.cafemessenger.com/info/info_sweetstuff2.html?ocid=TXT_TAGLM_OctWLtagline>
> >  Building ___ooOOoo__ Rainbows> www.trisomyonline.org> Families Helping 
> > Families On-line> 
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