[tri-med] Re: update on Annie

Barb,
 
I'm so sorry to hear about what happened to Annie.  It just makes me sooo mad.  
Unfortunately, things like this don't only happend in the public health care 
system.  I remember when Annette was just born, the medical profession didn't 
want to do anything for her.  When she was about five months old, I found out 
that they gave her morphine every hour on the hour for about six hours.  When I 
went in to see her, she looked horrible, worse than when we took her in.  I 
asked a nurse what she was giving Annette and she some meds because Annette was 
agitated.  Agitated!  My girl couldn't even cry!  When I asked her pediatrician 
about this, she looked on the chart and saw that they had been giving her 
morphine almost all day.  She was perplexed.  She didn't know what was going 
on.  I told her that they need to stop it.  It wasn't until years later that I 
learned that the hospital has an ethic committee who decides whether or not 
your child
 deserves to receive the care they need.  They meet without the parents and 
never tell the parents that they are meeting.  At that time, I had private 
insurance.  My insurance did not deny anything for Annette.  They paid well 
over 1 million dollars for her care for the first year alone.  So, it wasn't 
about money.  It was about doctors who had "experience" playing God.  I'm glad 
you got a lawyer.  From what I heard, a lawyer has access to ALL the hospital 
records.  There are things in our children's records that we never see.  So, I 
pray that God is with you and you make a difference for all our kids.
 
Annette 
--- On Sat, 11/8/08, Barbara Farlow <b_farlow@xxxxxxxxxxx> wrote:

From: Barbara Farlow <b_farlow@xxxxxxxxxxx>
Subject: [tri-med] update on Annie
To: "tri med lists" <tri-med@xxxxxxxxxxxxx>
Date: Saturday, November 8, 2008, 4:04 PM

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




_________________________________________________________________


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




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

Other related posts: