[tri-wings] Re: Update on Annie

Dear Barbara,
   
  I am so very sorry that you, Annie, and your family had to experience such 
heartlessness and cover-ups from the hospital staff.  I'm so sorry that Annie 
suffered at all.  My heart aches for you and Annie with all the compassion and 
sorrow from the depths of my being.  
   
  Ruth (Jill's Mom)
   
  
Barbara Farlow <b_farlow@xxxxxxxxxxx> wrote:
  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

                
---------------------------------
Do you Yahoo!?
 Everyone is raving about the  all-new Yahoo! Mail Beta.

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

Other related posts: