“If we believe this is just a bad doctor and just our daughter, we wouldn’t believe so much in it,” Barbara Farlow said. “It just seems to be that infants like this aren’t high on anybody’s list.”

The Farlows say they can’t afford a lawyer. Their suit alleges the hospital has a “policy of non-treatment for infants with serious genetic disorders.” Among their claims, the suit alleges the hospital and doctors “were negligent and in breach of their professional obligations” by failing and/or refusing to provide appropriate testing and diagnostic information about their daughter which “would have permitted them to give informed consent to treatment decisions.” The suit also alleges the hospital provided medications and placed a “do not resuscitate” order without consent “which hastened her death,” and “failed and/or refused to offer necessary palliation during Annie’s gradual asphyxiation.”

Additionally, it alleges the hospital disregarded the parents’ right to pursue medical treatment, denied the opportunity to consider an autopsy and was “negligent” in keeping medical records.

None of the allegations have been proven in court.

Sick Kids and the lawyers representing two doctors named in the suit have denied the allegations.

Barbara Farlow, whose family attends Mississauga’s St. Ignatius of Loyola Church, said she has been repeatedly denied access to relevant medical records. She wants to know if Annie was administered a narcotic pain medicine called Fentanyl and, if so, did that contribute to Annie’s death.  

The Farlows, who have been representing themselves, hope Annie’s drug records will support their case and help them secure legal counsel. Otherwise, they can’t afford to go to Superior Court.

It has been an uphill battle. Ontario’s Pediatric Death Review Committee cleared the hospital of any wrongdoing. A report in 2007 said “all the narcotics are accounted for” and “no active steps were taken to bring about Annie’s death.”

Hospital spokesperson Matet Nebres said hospital officials cannot comment because the case is before the courts, while Chief Coroner’s spokesperson Cheryl Mayr said the Coroners Act “does not permit us to speak publicly about death investigations on this one or any other investigations.”

On April 20, the Farlows wrote to the Coroner’s Pediatric Death Review Committee seeking a “correction” to the committee’s report because they said it failed to note the absence of parental consent for a “do not resuscitate order,” nor did it include the official record of medication administrated during the final 17 hours of Annie’s life. But in a May 7 response, Chief Coroner Andre McCallum wrote that the investigation is “complete” and “the case file is closed.”

In a 2009 Toronto Star interview, Sick Kids’ Pediatrician-in-Chief Denis Daneman said it is untrue to claim that children with a disability or genetic condition receive sub-level care: “Every single patient at this hospital receives the best care at each and every stage of their stay with us,” he said.

Annie was born with Trisomy 13, a genetic condition associated with severe developmental and physical disabilities. She spent her first six weeks in hospital and was home for almost six weeks before returning to the hospital in distress. She died within 24 hours.

Her mother said it’s been a trying time for the family since Annie died. She is “hoping against hope” the family can obtain all of Annie’s medical records to understand exactly what happened.

Barbara believes the case is important because it raises the issue of the rights of children born with disabilities. The family has received moral support from groups including Community Living Ontario,  L’Arche (Ontario) and the Canadian Down Syndrome Society.

More than 1,100 people have joined a Facebook group “Justice for Annie” created by University of Alberta Professor Robert Wilson. He posted a Jan. 13 letter he sent Ontario Premier Dalton McGuinty that asks for a “decisive answer” about Annie’s death.

“Canada’s most vulnerable citizens deserve nothing less than full disclosure,” Wilson wrote.

In court documents, a judge noted “for the Farlows, this case is not about money but is about systemic change,” including  a requirement for hospitals to educate doctors on the law of consent. The Farlows also want other policy changes, such as the requirement for a written do-not-resuscitate order, “transparent policies on the allocation of treatment for children” and a more secure narcotic dispensing system.

The next court date has not been set. The hospital recently asked the Farlows to enter into case management, a procedural process managed by a judge in which all evidence is tabled so the parties can determine if an out-of-court resolution is possible.