[tri-med] Re: Public Health Care Alert/Canada

I should mention that even with freedom of choice here, it is still very hard 
to find doctors that are knowledgeable about trisomies.  In the first two weeks 
of Bryson's life, in searching for a Pediatric Doctor, we went through 9, count 
them 9 doctors, who were clueless about Trisomy 13.  The one who did know a 
little only saw one child one day in the PICU while she was doing her residency 
at a local University Hospital.  One doc came prepared for our appointment with 
an inch & 1/2 of documents with the mortality rates of children with Trisomy 
13.  Wow...what a great help he was!  First thing is for the Medical Journals 
and sources that doctors use to be updated with current findings and include 
the TRUTH and current statistics;(not from the 1960's) that there are survivors 
and that some do very well, thank you very much!  We even had one elder 
physician who stated that years ago, before babies were allowed to stay in the 
labor & delivery room with the parents, that they used to take babies with 
Trisomies (including Down's Syndrome) and put them in a corner to die.  
Needless to say, we were mortified by his statements, but apparently they were 
statements of fact and we continued our search until we found someone that was 
up to learning along with us.  To take on the challenge of helping our baby to 
survive.
Hard to believe that information is still over 40 years old.  Complete the TRIS 
surveys so that we can forge ahead, if not for our own special kiddos, but 
those to come.
I'll get off my soapbox now.
DorettaGrandma to Bryson-Full T-13Big three years old and starting school in 
September!  Oh happy day! 

> From: kimihlenfeldt@xxxxxxxxxxx
> To: tri-med@xxxxxxxxxxxxx
> Subject: [tri-med] Re: Public Health Care Alert/Canada
> Date: Sat, 18 Jul 2009 13:37:29 -0500
> 
> Hi Barb.  Very well put!!!!  I am scared to have public healthcare just 
> because of your case alone.  Here in the U.S., there are doctors who refuse 
> to treat trisomy kids.  We have the right to get a second, third, fourth 
> opinion or keep trying through others to find a doctor who is willing to 
> treat our kids (like we do on this list right now).  If the government were 
> to make it a government run healthcare system and they have a committee set 
> up to determine who to spend money on and who not to, what will happen to our 
> kids?  Chances are our kids will get nothing because "it's futile" or "they 
> make no contribution to society".  I have heard these things said in front of 
> me and I (very rudely - I'm not very nice when it comes to this stuff) say 
> that my daughter has contributed more to society in her three years than they 
> have in their entire lives.  Who is going to sit on this committee?  I 
> certainly wouldn't want to sit on this committee because I also have my 
> biases against p
>  eople who do certain things (rapists, serial killers are a couple) and I 
> know it would cloud my judgement.  I know this about myself and accept it and 
> would not put myself in that position. 
> 
>  
> 
> What scares me as well is how Obama so off-handedly commented about not being 
> good at bowling and bowling like someone in the Special Olympics.  This is 
> the president!!!  He is the one preaching equality and working as a team.  He 
> is the one setting the example and this is how he does it?  This tells me 
> that chances are my child will not fare well if his healthcare plan gets set 
> up the way he wants it.  Just my opinion, though.
> 
>  
> 
> I believe everyone should be able to receive the medical care they need.  
> Everyone deserves a chance to live.  I wish I knew the magic way to fix 
> everything so life could be a little smoother.  I always enjoy reading your 
> posts, Barb.  Good job!!
> 
>  
> 
> Kim, wife to Kerry (complex balanced translocation between the 9, 15, and 
> 18th chromosomes), mom to Cameron, 10 (same genetics as dad), Cayden T18 
> (12/16/02 to 01/16/03), and Candace, 3 (Partial Trisomy 15 and 18) 
>  
> > From: b_farlow@xxxxxxxxxxx
> > To: tri-med@xxxxxxxxxxxxx
> > Subject: [tri-med] Re: Public Health Care Alert/Canada
> > Date: Sat, 18 Jul 2009 16:35:23 +0000
> > 
> > There are many comparisons to be made, good and bad between the systems, 
> > but what about accountability? 
> > 
> > When a government creates rationing strategies that are not consistent with 
> > consent laws, where is the accountability? 
> > 
> > Karen, you asked if I believed that it was the government or the doctors 
> > and hospitals and I would say both. There are most definitely government 
> > policies that involve reducing the wait list for surgeries. Part of how 
> > they do that is to prevent certain people from getting a diagnosis for 
> > surgery and getting on the wait list to begin with. The basis of this 
> > withholding is evidence based statistics. 
> > 
> > Tri kids fall into a trap because the stats associated with their label is 
> > so grim. We all know that medical systems (docs etc) are ignorant about the 
> > possibilities for our kids. It is easy to withhold a diagnosis for surgery 
> > if you believe the stats. In Canada, there is no worry about obtaining 
> > consent for withholding because the kids have such little value in court. 
> > We have a letter from the ENT surgeon who was likely the one that decided 
> > that Annie would not receive a diagnosis for her critical hypercarbia. He 
> > wrote that all times, her care was "compassionate and appropriate." I wish 
> > someone would explain the applicability of both of those words in terms of 
> > Annie's suffering without comfort measures, tragic death and the absence of 
> > knowing what was wrong with her and whether she could have been helped. 
> > 
> > The intensive care doc thought a DNR was the most obvious thing in the 
> > world, especially given that it was apparent that nobody would provide a 
> > diagnosis anyways. So he placed one in the records without our knowledge or 
> > consent. A lethal dose of Fentanyl was removed without a doc's order and 
> > the final, direct-entry electronic medication admin report is non-existent. 
> > (Hospital refers to that, and many other narc violations as "mere 
> > oversights".)
> > 
> > The whole situation violated many laws. Where is the accountability? What 
> > would happen at this point in the US or Aussie? 
> > 
> > Here, the Duputy Chief Coroner and his peds committee did a review and 
> > created a report called the "Forensic Audit" that purports to "account for 
> > all the narcotics....providing evidence that no active steps were takent to 
> > bring about Annie's death" 
> > 
> > We have spent a year and almost $10,000 trying to obtain a copy of this 
> > report. No way they will provide it. The hospital lawyers, in answer to the 
> > question, "was any Fentanyl administered to Annie?" (note that Fentanyl is 
> > a stable substance that can be determined post-exhumation) responded that 
> > two nurses and two doctors did NOT administer Fentanyl and the lethal dose 
> > was left on a medication cart where it was likely disposed of. 
> > 
> > But if the disposal is not documented, then all of the narcotics cannot 
> > possibly be accounted for and the Coroner's report is now supect. (The 
> > chief Coroner refuses to answer the question about Fentanyl)
> > 
> > So we turn to the Government member in charge of the Coroner's Office. It 
> > has been almost a year of asking for a copy of the Forensic Audit or 
> > requesting that he orders a disinterment. NOPE. So, we issued a final 
> > request. We asked him to direct the Coroner to answer the question, "was 
> > any Fentanyl administered to Annie on the final day of her life? ". 
> > 
> > We are waiting for an answer. Is it really such a difficult question? It is 
> > if the correct answer is "yes." There is only one reason why you would 
> > administer Fentanyl, a narc 80 times stronger than Morphine to a small baby 
> > like Annie. 
> > 
> > So this is what happens with a government run system. The government 
> > creates the policies, runs the hospitals, and is in charge of 
> > accountability for the whole thing. 
> > 
> > Yes, health care is economically efficient here. IN the big picture, 
> > macroscopically, we provide good health care to more people at a 
> > significantly lower price per person than the US. My experience is that the 
> > shortfall lies with certain populations when evdence based statistics are 
> > erroneously or discriminantly applied. When this happens. I would say that 
> > there is no accountability and it is all just too bad for the family who 
> > lost a loved one. 
> > 
> > This is the essence of my fear for the triers in the US. At the very least, 
> > it appears that those developing health care reforms are trying to be 
> > transparent regarding rationing and that is wonderful to see. If we had 
> > known the plan we would have ensured that Annie didn't suffer. We also 
> > would have had the option of paying for treatment in the US. 
> > 
> > Barb
> > Annie's mom
> > 
> > 
> > 
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> 
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