[tri-wings] Update/ Annie in Provincial Legislature

Hello Everyone, 

Yesterday, a letter we wrote to a government member about what happened to our 
daughter was read in the house. This means that it is part of the permanent 
public record. That means a lot to us. 

I have always believed that the care our tri-babies receive is very 
significant. I think of them as gate-keepers. If they receive ethical and 
appropriate medical care then all of the other kids with other birth defects 
and genetic conditions are safe. Too many things went wrong with our daughter's 
care. They all took place in a reputable hospital with highly-trained and 
respected physicians. The hospital wasn't busy and we were there night and day. 
There is no excuse for what happened except that there is something very wrong 
with the culture. 

I have extracted the part of the transcript that relates to our letter, if 
anyone is interested to read it. 

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

                                      *******************************




That takes me to a letter I'd like to read into the record
today from the Farlow family, and the Farlow family is with us today. Tim and
Barbara Farlow are in the members' gallery, along with their children Rob, Jack
and Jenn. I'd like to welcome them here today. They have been very, very strong
advocates on a case involving their little sister and daughter. I think if this
legislation can prevent what happened to the Farlows from happening to other
people, then it will be a success. The letter reads:

"Dear Mr. Dunlop:

"We would like to share our
family's experience with the Ontario
coroner's office at this critical time when the Coroners Act is being amended.

"The motto for the coroner's
office is, 'We speak for the dead to protect the living.' Thank you, Mr.
Dunlop, for providing a voice for our baby daughter, Annie. The coroner's
office has failed to do so.

"Three years ago, our 80-day-old
daughter"-and that's 80 days-"died at an Ontario hospital under a very 
disturbing set
of circumstances. We raised the issues with the hospital and received letters
of apology from hospital executives and from its chief of critical care.
However, we could not resolve the problems with effective recommendations.

"We became aware that the hospital
was in violation of the Coroners Act and once we alerted the president of this,
the coroner was notified immediately.

"This is when our dealings with
the coroner's office began. We first met with Dr. Jim Cairns in June 2006 and
we placed blind trust in his expertise and integrity and that of the coroner's
office.

"Dr. Cairns told us that the
pediatric death review committee would investigate Annie's death. He said,
'Don't worry, I carry a big stick. I foresee that I will chair a meeting
between you and the hospital once the review is finished in two or three
months.'

"We had two goals: (1) to
understand why or how Annie died, and (2) to obtain recommendations from the
coroner to ensure that another child would not suffer and die in the same way.

"Our daughter was born with a
serious and complex condition. We expected to make 'best-interests' decisions
for her, and with the advice of her doctors.

"Something went very wrong with
Annie's medical care. She died in a tragic set of circumstances within 24 hours
of arrival at the hospital. Annie developed respiratory distress and the
doctors told us it was pneumonia. A few hours after arrival, our daughter had a
respiratory crash.

"When this happens, everyone is
supposed to come running from all directions. For over one hour we stood there
alone with the therapist, who was bagging Annie to help her breathe, until
finally, the doctor called the critical care unit.

"Annie died 16 hours later. They
told us she needed a type of surgery that she would not survive. Of course, we
trusted and respected the doctors.

"When Annie stopped breathing we
did not want her to be put on life support because we were told there was no
hope.

"Days after our daughter's death,
we realized that many things didn't make sense. We obtained a copy of the
medical records. Our instincts were confirmed when a nurse with 10 years
experience in a critical care unit reviewed the records. She said, 'I'm sorry,
what happened wasn't right.'

0950 

"Here is what we learned:

"-A 'do not resuscitate' order had
been placed in the records before we gave consent;

"-No diagnostic tests had been
done. There were many things that could have been wrong with Annie and many
were treatable.

"-The final medication report was
missing.

"We were in shock. We were so sad that
our daughter died in this way.

"After nine months the coroner's
review was complete. There was no meeting chaired with the hospital as Dr.
Cairns had told us. The report stated that the care provided in the final 24
hours was not appropriate but before that the committee thought that Annie's
care was reasonable and appropriate. The diagnosis for pneumonia was not
definitive. No specific cause of death could be determined, but the report
stated that the death was natural. It also stated that it was not certain that
our daughter needed the stressful surgery. The committee made only two
recommendations. The first was that they should do a forensic audit of the
narcotic cabinet from the day that Annie had died. The audit was done and the
report stated that all the narcotics were accounted for and that no active
steps were taken to bring about Annie's death. The second was that the hospital
should make sure other hospitals knew about their patient-centred care
policies.

"We were very upset. These
recommendations would not change anything.

"We met with Dr. Cairns. He
refused to answer our questions about what happened on Annie's last day. We
asked, 'How much narcotics were signed out for Annie?' Dr. Cairns said he did
not need to tell us that. He became angry with our many questions and refused
to answer them. He told us, 'The committee determined that your daughter's
final care was not appropriate. You can go to the college or the civil or
criminal court. That is not my call.'

"That was not what we wanted. There
was something wrong with the system, not just one doctor. We believe that there
was a problem with the medical care provided to children like Annie. All we
wanted was to understand what happened and ensure changes were made. The
coroner's office is the only body that has the expertise to review medical
deaths and make recommendations.

"Besides, children like Annie have
no protection in the legal system and a senior crown prosecutor told us that no
matter what, they would not investigate.

"We decided to appeal for a
coroner's inquest.

"We met with leaders from most of
the major disability groups and with Senator Sharon Carstairs, who had authored
many studies on end-of-life care. The groups understood our concerns and
supported us. They all wrote letters to the coroner in support of our appeal
for an inquest. The letters represented tens of thousands of vulnerable lives.

"The executive director of
Community Living Ontario wrote a letter to the chief coroner. It stated:
'Nothing (the parents) have learned and communicated to us convinces either
them or us that an inquest is unnecessary in this tragic case. In fact, the
persistent attempts to close the book on this matter convince us all the more
that it ought to be fully opened to public scrutiny.'

"Meantime we obtained copies of
the narcotic sign-out sheets through freedom-of-information legislation. Dr.
Cairns had refused to tell us how much narcotics had been signed out for Annie.

"We learned that in the final
hours, two lethal doses of narcotics were removed from the narcotic cabinet
with no doctor's order. We were very concerned.

"We decided to have a medical
expert review our daughter's records.

"The reviewer informed us that our
daughter endured continual and progressive asphyxiation from the fifth day of
her life. He wrote, 'I am in complete disagreement with the coroner's reference
that the early management of treatments and care of Annie's respiratory
insufficiency were reasonable or appropriate.'

"With respect to the missing
narcotics and the missing medication records, the reviewer wrote that the
coroner's committee took 'a dismissive and cavalier view of the violations.' He
wrote, 'Unless there are adequate and sufficient explanations, aren't we left
with uncomforting but plausible and suspicious speculations?'

"Our medical reviewer also
documented 14 material errors in the 19-page coroner's report.

"In June of this year, we received
a letter telling us tersely that our appeal for a coroner's inquest was denied.
There was no justification and no answers to our questions.

"We wrote a letter to the new
chief coroner, Dr. McCallum, asking him how it was determined that the
narcotics were accounted for.

"Dr. McCallum wrote that there was
no provision in the Coroners Act for him to review the case subsequent to the
denial of an appeal for an inquest.

"He added, 'The matter is
therefore concluded from our perspective.'

"After three years, we find it
difficult to believe that we do not know how or why our daughter died or why it
cannot be determined.

"Annie's death raises three major
concerns related to the system.

"(1) There is a need to review the
prenatal genetics program and the effect of the treatment of infants with
genetic conditions.

"(2) Transparency is required
regarding the admission criteria to the intensive care unit and the manner in
which narcotics are used.

"(3) There is a need to review why
there is no protection in Ontario
for vulnerable lives like Annie's.

"On September 24 of this year we
wrote a letter to Minister Bartolucci. We questioned the conduct and
accountability of the coroner's office. We wrote that we were looking for proof
and assurance that our daughter's death was natural and inevitable. We are
still waiting for a response.

"All that we asked of the medical
system was to give Annie a chance if it seemed to be in her best interests.
Otherwise, we wished for her to have a peaceful and dignified death. When a
child suffers without need and dies in this manner, something is very wrong.

"Hubert Humphrey wrote: 'The moral
test of government is how that government treats those who are in the dawn of
life, the children; those who are in the twilight of life, the elderly; and
those who are in the shadows of life, the sick, needy and the handicapped.'

"Mr. Dunlop, we feel the coroner'
s office failed us. We are of the supportable position that the coroner is
deliberately withholding the truth. With the scathing conclusions of the Goudge
inquiry, all Ontarians are left with justifiably shaken confidence in the
accuracy of the coroner's office reports.

"We feel the coroner's office has
proven to be incapable of policing itself and ask that you propose adequate
checks and balances are installed to ensure the coroner's office can meet its
mandate."

That's signed by Barbara and Tim
Farlow. They are members of Patients for Patient Safety Canada. I want to thank
them for being here today and for their persistence in this case. It's people
like the Farlows who bring about the reason for change and the reason why we're
here today. What I would like to say as we move forward with this is that this
shouldn't happen to any family. In the end, the results of the inquiry and the
passing of Bill 115 have to make sure that that transparency is in place so all
of these types of questions are answered.



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

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