Seeking Justice for Annie
Facebook Group "Justice for Annie" initiated by professor Rob Wilson from University of Alberta
Media and Public Information
Annie's story should have been simple. Born with a serious genetic condition, she was mildly afflicted. All we asked for was a diagnosis and appropriate treatment plan. That plan might have been palliative care or surgery. We knew that there would be some difficult decisions to make. Annie would not likely have lived past the age of 10 and she would have many challenges but that was the life she was given and we loved her regardless. We fully researched the quality of life of children like Annie and we discovered quality of life existed in ways we had not considered before. (Mieko and Natalia)
Annie was born full term, 7lb, with Apgars of 8 and 9. She was thriving and getting chubby. She smiled for the first time a few days before she died. Many of the babies born are blind or deaf but our miracle could see and hear.
When Annie died within 24 hours arrival at the Children's Hospital at the age of 80 days, something didn't seem right. We trusted and respected our doctor and the Hospital has a fabulous reputation but our instincts told us that something was illogical about the sequence of events that occurred in the final admission.
We acquired the medical records and discovered things that we wish we never knew.
We have learned that Annie slowly asphyxiated to death over the course of most of her life and the system, consisting of many doctors, looked the other way and ignored the critical indications again and again.
It seems that Kids like Annie don't receive life saving care in our Ontario public health care system. When her condition became acute, she was sent by ambulance to the Children's Hospital and we were told she had pneumonia. (She didn't.) Less than 24 hours later, the intensive care doctor described a very serious operation that Annie would not survive, so when she suddenly stopped breathing, it made no sense to put her on life support.
We now know that there was no diagnostic basis for the surgery that had been described. We know that lethal quantities of narcotics (Fentanyl and Morphine) were removed from the narcotic cabinet under Annie's name with no physicians order. (that is, there is no physician's order in the medical records in our possession)
Why did so many doctors in the system disregard the multiple, critical progressive indications of respiratory failure? Why did Annie suddenly stop breathing? Why is there no final medication administration report? Why did the intensive care doctor place an effective "do not resuscitate order" in the records hours before Annie stopped breathing?
To this day, we do not know the answers to these questions. The Coroner's Office claimed that all of the narcotics were accounted for, but recently, we have discovered, according to documents obtained from the Coroner's file, that this is not true. The Chief Coroner refuses to answer the question, "Was Annie given any Fentanyl? (a narcotic 80 times stronger than morphine). The Chief Coroner also refuses to confirm or deny if the official Medication Administration Record is part of the Coroner's File. The Minister who oversees the Coroner's office also refuses to answer questions.
Canadian civil laws place a value on Annie's life at about $25,000, according to our understanding. We have been told the legal costs including risks of a loss would be as high as$600.000.
There is virtually NO protection for children with disabilities in the system. At the same time, there are tremendous financial pressures on the system to reduce costs.
Annie's story has been told at conferences, workshops, publications and lectures. Now, it is the subject of a civil law suit.
This website was created because we believe that transparency is important. In fact, we believe that transparency and truth-telling are the foundations of ethical and trustworthy medical care. These cannot exist unless there is accountability to policies, laws and professional codes of ethics.
"The events of the final 24 hours and the initiation of palliative care together with writing of DNR order…do not represent appropriate forms of care. …it was by no means certain that she (Annie) would have to undergo prolonged interventions such as prolonged ventilation or distressful surgery.”
Coroner’s Paediatric Death Review Committee Report April 13, 2007
It is reprehensible and contrary to the basic tenets of the good practice of medicine that this infant was left to endure continual and progressive asphyxiation
Dr. Paul Byrne, Neonatologist, Expert Medical Review
“Sometimes, when we care for children such as Annie who have very complex care needs…communication does not occur in as clear and consistent fashion as we would wish. For that we are very sorry."
Hospital Vice President, May 23, 2006
"It all starts to make sense if you consider that maybe there is an unwritten, unspoken policy for kids like Annie. This policy, if it exists, would state that there are some children who are not offered life-saving treatment. It is unwritten because its existence would be contrary to the Charter of Rights and Freedoms. I am begging you: convince me that I am profoundly wrong."
March 2006 Letter to Annie's Primary Doctor
Annie was born full term, 7lb, with Apgars of 8 and 9. She was thriving and getting chubby. She smiled for the first time a few days before she died. Many of the babies born are blind or deaf but our miracle could see and hear.
When Annie died within 24 hours arrival at the Children's Hospital at the age of 80 days, something didn't seem right. We trusted and respected our doctor and the Hospital has a fabulous reputation but our instincts told us that something was illogical about the sequence of events that occurred in the final admission.
We acquired the medical records and discovered things that we wish we never knew.
We have learned that Annie slowly asphyxiated to death over the course of most of her life and the system, consisting of many doctors, looked the other way and ignored the critical indications again and again.
It seems that Kids like Annie don't receive life saving care in our Ontario public health care system. When her condition became acute, she was sent by ambulance to the Children's Hospital and we were told she had pneumonia. (She didn't.) Less than 24 hours later, the intensive care doctor described a very serious operation that Annie would not survive, so when she suddenly stopped breathing, it made no sense to put her on life support.
We now know that there was no diagnostic basis for the surgery that had been described. We know that lethal quantities of narcotics (Fentanyl and Morphine) were removed from the narcotic cabinet under Annie's name with no physicians order. (that is, there is no physician's order in the medical records in our possession)
Why did so many doctors in the system disregard the multiple, critical progressive indications of respiratory failure? Why did Annie suddenly stop breathing? Why is there no final medication administration report? Why did the intensive care doctor place an effective "do not resuscitate order" in the records hours before Annie stopped breathing?
To this day, we do not know the answers to these questions. The Coroner's Office claimed that all of the narcotics were accounted for, but recently, we have discovered, according to documents obtained from the Coroner's file, that this is not true. The Chief Coroner refuses to answer the question, "Was Annie given any Fentanyl? (a narcotic 80 times stronger than morphine). The Chief Coroner also refuses to confirm or deny if the official Medication Administration Record is part of the Coroner's File. The Minister who oversees the Coroner's office also refuses to answer questions.
Canadian civil laws place a value on Annie's life at about $25,000, according to our understanding. We have been told the legal costs including risks of a loss would be as high as$600.000.
There is virtually NO protection for children with disabilities in the system. At the same time, there are tremendous financial pressures on the system to reduce costs.
Annie's story has been told at conferences, workshops, publications and lectures. Now, it is the subject of a civil law suit.
This website was created because we believe that transparency is important. In fact, we believe that transparency and truth-telling are the foundations of ethical and trustworthy medical care. These cannot exist unless there is accountability to policies, laws and professional codes of ethics.
"The events of the final 24 hours and the initiation of palliative care together with writing of DNR order…do not represent appropriate forms of care. …it was by no means certain that she (Annie) would have to undergo prolonged interventions such as prolonged ventilation or distressful surgery.”
Coroner’s Paediatric Death Review Committee Report April 13, 2007
It is reprehensible and contrary to the basic tenets of the good practice of medicine that this infant was left to endure continual and progressive asphyxiation
Dr. Paul Byrne, Neonatologist, Expert Medical Review
“Sometimes, when we care for children such as Annie who have very complex care needs…communication does not occur in as clear and consistent fashion as we would wish. For that we are very sorry."
Hospital Vice President, May 23, 2006
"It all starts to make sense if you consider that maybe there is an unwritten, unspoken policy for kids like Annie. This policy, if it exists, would state that there are some children who are not offered life-saving treatment. It is unwritten because its existence would be contrary to the Charter of Rights and Freedoms. I am begging you: convince me that I am profoundly wrong."
March 2006 Letter to Annie's Primary Doctor