[tri-med] Re: Update on Annie

((Barb)),
you have come so far with the whole issue and have finally gotten the right 
kind of attention.
 in ontario it is law that when someone  dies in an institution or in police 
custody that  that an inquest is held.  every single time we lost an inmate 
there was an inquest- without fail. we had to face an inquest  even when an 
inmate died from known causes (ie-cancer, aids) while in our hospital unit 
under a doctor's care.  it seems then that the deaths of people in 
jail/custody are worth looking into in a public manner yet a child dying 
unexpectedly  in an insitution does not merit an inquest. this is making me 
just a little more angry than usual when i think of your family's 
experiences and annie's.  i am fast becoming ashamed to say i live in the 
same province.  our values clearly are out of whack. the government is 
protecting itself from lawsuits when  they fear victim's families can speak 
for them and ignoring what could be a case of  abuse of authority at the 
very least and murder at the other end of the scale. aahhhh!!
 that is saying one life matters more than another because of their "value" 
to society.  down off the soapbox before i get comfortable.
 sending our love,
pam, darrell, kira abbey and our angel tyler
salem ontario


----- Original Message ----- 
From: "Barbara Farlow" <b_farlow@xxxxxxxxxxx>
To: <tri-wings@xxxxxxxxxxxxx>; <tri-med@xxxxxxxxxxxxx>
Sent: Tuesday, June 20, 2006 1:26 PM
Subject: [tri-med] Update on Annie


> I thought I would give everyone an update on the care that our daughter,
> Annie (05/25/05-08/12/05) recievied at the Children's Hospital in Toronto,
> Canada. To briefly summarize, the hospital told us prenatally that the
> existing policies did not deny Annie an opportunity for surgery and that 
> she
> would be treated like any child in that surgery, if required would be
> discussed.   The reality is that unwritten policies meant that they would
> notoffer surgery, or even diagnose for it. A foreign physician from
> Australiaordered a consult from a respirologist which revealed the 
> suspicion
> of tracheal stenosis. (narrow trachea due to blood vessels wrapped around
> it(extrinsic-vascular rings) or narrow just because of the way it formed
> (intrinsic). This suspicious was instantly refuted by 2 different 
> physicians
> within hours.   The records reveal that the physicians continued to be
> aware,and when Annie developed respiratory acidosis form high CO2 levels, 
> it
> was ignored. Her face turned cherry red from CO2 and she developed 
> episodic
> respiratory distress. All ignored.   When Annie arrived in the ER in such
> acute distress that her BP was 173/144 (she was perfusing well, was on
> diuretics for Pulmonary Edema, CXR and Chest both clear, WBC ,low, CXR
> showedsevere narrowing of trachea) we were told she had pneumonia and that
> her trachea was fine, and she was given huge amounts of bolus IV fluids 
> and
> sent to the ward.   Hours later, she developed acute respiratory distress
> again and the RT needed to bag her. The physician walked did, took an
> arterial blood gas, and walked out. An hour later he returned, and then 
> made
> a call to the PICU to which she was transferred a half hour later.   The
> intesivist asked for a DNR order to which we responded with a request for
> medical information. We told him that we were told she had pneumonia. He
> didn't want to intubate, and ignored the clinical signs that required it;
> restless, agitated, gaspiing and grunting. (nurse's words) Blood tests,
> taken12 hours later showed CO2 levels over 100 (venous). He then entered a
> DNR without consent or our knowledge. A nurse gave a supplemental dosage 
> of
> chloral hydrate without a doctors order. The final nurse arrived, turned 
> the
> alarms off, and left the room. (1:1 nursing) The final medication report
> (computerized) is inexplicably missing. Annie died within 24 hours of
> arriving at the hospital.   Nobody has ever said that Annie was medically
> futile. In fact, the cardiologist wrote that her heart defect was mild and
> likely needed no intervention. Other than her trachea, there were no other
> life threatening conditions. Her trachea may have needed a difficult
> surgery,or a low risk non invasive one, depending on the reason for the
> narrowing. We will never know. She could see, hear,smile and she did not
> havethe brain defect, holopresencephaly associated with T13.   We have 
> been
> to many,many meetings at the hospital. The intensivist said that he 
> entered
> the DNR without discussion because, " you were intelligent and articulate 
> so
> I didn't think you needed a discussion" The primary care physician 
> outwardly
> denied telling us her trachea was fine.The director of critical care said
> that a fellow had in fact given a voice order for the sedative, but the
> nurseforgot to write it down. However, she could not produce the name of 
> the
> fellow.   We complaiined to the Board of Trustees. An internal review was
> ordered. The review rendered a written apology for "communication" along
> witha recommendation to review 4 policies. The policies are perfect, they
> simply were not followed.   The Chief of Critical Care Medicine told us 
> the
> actions of his staff were unacceptable and that he was very sorry. When we
> asked what he was going to do about it, he said, "Speak to the staff". 
> We
> feel this hospital needs some pretty major changes. We formally requested 
> a
> meeting with the Chair of the Bd, asking him for some advice and perhaps 
> the
> suggestion of a new direction in our attempt at an internal resolution. No
> answer.  Finally, we wrote to the CEO, Health Minister, and Chief Coroner 
> to
> say that the hospital was in violation of the Coroner's Act for not making
> notification. We will request that a member of the homicide squad is
> includedin the review. The matter is now in the hands of the Coroner.   It
> should have been so simple. We should have been given all information to
> makedecisions for Annie. The last thing we wanted was for her to suffer
> unnecessarily. The "good" doctors who unilaterally decided that she was
> better off dead, didn't care one bit that she suffered horrifically.   Our
> quest continues. It in not just about tri13/18. It is about humane and
> compassionate care for all vulnerable people. By the way, this is our
> Country's best Children's Hospital. The medical system in Canada is not
> really litigious. The life if a vulnerable person is deemed to have very
> little value and the costs of litigation are prohibitive.   Barb   mom to
> Annie 05/25/05-08/12/05
>                  Building ___ooOOoo__ Rainbows
>                       www.trisomyonline.org
>                  Families Helping Families On-line
> 


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

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