[tri-med] update on Annie

Hello
It has been a while since I provided everyone with an update on my situation 
with Annie. 

As a brief summary, Annie died in Aug 2005 at the age of 80 days within 24 
hours of arrival at one of the best hospitals in Canada. 

During that time, a DNR was entered in the record without informed consent, two 
lethal quantities were signed out of the narcotic cabinet (20mg Morphine and 
100mcg Fentanyl) without a physician's order and the final medication report is 
inexplicably missing. A nurse gave a supplemental dose of cloral hydrate with 
no doctor's order that was shown as administered just before the medication 
report disappeared. Annie was perfusing well, with stable hemodynamics and a 
SAT rate of 97% one hour before death at which time the records stopped. 

The intensivist told us Annie needed a surgery that she would not survive. 
However, this is doubtful as there was no diagnostic testing. When I asked this 
physician what his diagnostic basis was, he smiled and said, "experience."

The Coroner and his Pediatric Committee determined that the care was 
"inappropriate" but said the narcotics were accounted for. When we asked where 
the narcotics went to the Deputy Chief Coroner responded, "I don't need to tell 
you that". We appealed for an inquest with letters from disabilty groups 
representing tens of thousands of people, but the answer was "NO" with no 
justification. 

We do not know how/why Annie died or could not be helped. She had tri 13 with 
no Holoprosencephaly. Her cardiac problem was minor and not expected to require 
surgery. All other organs were fine. Her carbon dioxide levels became critical 
on the 5th day but they were repeated ignored as they grew worse and worse 
until Annie died. We have no idea of the cause. There was no autopsy and the 
Coroner declared that the cause of death was "complications of trisomy 13". 

Recently, the Privacy Commission refused to make an order for the hospital to 
do a search for the missing medication report (it is a direct-entry electronic 
record) The adjudicator said that the hospital did a "reasonable" search 
because they checked the system twice. The fact is that electronic records 
cannot be erased. He did not say what they searched or where they searched.

It would seem that the whole system in Canada, when it comes to children with 
disabilities, is a bit of a joke (and that is a nice word). Annie was not brain 
dead and she was not on life support. The fact that these things happened to 
her effectively put thousands of vulnerable lives at risk. 

Next is Human Rights mediation in December. The UN's High Commissioner's office 
is following the case since we met with  a human rights officer in Geneva in 
July 2007. 

I am continuing to do public speaking and this month our National Association 
for people with developmental disabilities (CACL) is having a panel at their 
conference called "genetic justice." I have been invited to be on it. 

I have heard that a little one with trisomy 18 had successful cardiac surgery 
in another part of Canada recently, but for the most part, it would seem that 
our system covertly withholds appropriate treatment. I wish I had known that. 
If we had known that our hospital has internal policies regarding the 
withholding, withdrawal and terminal sedation of certain children, we would 
have just taken Annie home from the hospital. In Ontario. infants with apnea 
due to a pre-existing condition, are not evel allowed to have an apnea/cardio 
respiratory monitor. 

This whole situation has been devasting to us. If life-saving treatment was not 
in the best interests for Annie, then the doctors should have said so. The 
lied, again and again, telling us that they were doing everything as they would 
for another child. It is rather bizarre because we thought we had a very good 
relationship with them. 

In Canada, doctors can do these things because there is no legal protection for 
children. Their lives are worth so little compared to the cost of a lawyer that 
only a fool wouild litigate. Nonetheless, we do have a lawsuit. 

I hope that the US does not go to a public health care system.

Barb (Annie's Mom)
www.anniefarlow.com




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

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