Five years after the death of their two-and-a-half-month-old daughter, Barb and Tim Farlow are still looking for answers.

The Mississauga couple is at a loss to understand many of the circumstances surrounding the death of Annie, who was born with Trisomy 13, a chromosomal abnormality associated with severe developmental and physical disabilities.

Annie died within 24 hours of being rushed to the Hospital for Sick Children in respiratory distress. The coroner has said Annie’s death was caused by complications of Trisomy 13. But the Farlows suspect the baby’s death may have been hastened and question whether there exists at the hospital a culture that prevents seriously ill and disabled infants from receiving life-saving treatment.

They allege a do-not-resuscitate order was placed on Annie’s medical charts before they gave informed consent. And they wonder whether a narcotic was given to Annie to hasten her death, arguing there are missing records relating to a drug signed out in her name.

The hospital and caregivers involved will not discuss the case because the Farlows are suing them and the case is before the courts. In statements of defence however, they flatly deny all allegations.

In its statement, the hospital says it “denies that there was any negligence, breach of duty, want of care (or) breach of contract,” and adds that as Annie’s respiratory distress increased, her doctors and parents together decided that she would receive “comfort care” only.

The Farlows took their lawsuit to small claims court, but the hospital successfully argued that the case be moved to Superior Court, where it was transferred earlier this year. The Farlows say they will now likely have to drop the suit because they won’t be able to afford the legal bills.

But they still want a higher authority to look into the case and wonder what ever happened to plans by the province to create a complaints committee and council to oversee the work of the coroner’s office. Recommendations to create these bodies were made two years ago by a commission of public inquiry, which looked into the mistakes of Dr. Charles Smith, a pathologist blamed for multiple wrongful prosecutions and deaths.

The province amended the Coroner’s Act 16 months ago to pave the way for the creation of these bodies. A spokesperson for Community Safety Minister Jim Bradley would only say they are coming, but couldn’t specify when.

The Farlows, parents of nine other children, refuse to let go of the case. Barb is scheduled to address a parliamentary committee on palliative and compassionate care in Ottawa later this month.

Conservative MPP and community safety critic Garfield Dunlop has taken up the Farlow’s case at Queen’s Park, arguing in Question Period that a coroner’s oversight council and complaints committee should be in place to look into deaths such as Annie’s.

“This family has some legitimate questions and they need somewhere to turn to get clear answers,” he says.

The case has also grabbed the attention of disability groups and fuelled debate over ethical decisions in end-of-life care.

“I think they are taking it further than most parents would, but they have a right to do that,” observes Dick Sobsey, associate director of the JP Das Developmental Disabilities Centre and director of the John Dossetor Health Ethics Centre at the University of Alberta. Sobsey is also the father of a disabled child and admits to having limited information about the Farlow case.

Still, he says it touches on uncomfortable issues that society tends to shy away from.

“There is a disconnect between what the public thinks goes on in hospitals and what really goes on. Most infants and children who die in hospital critical care units die because of a decision to withhold or withdraw care . . . not in spite of all efforts to ensure their survival. Many die because of a decision based on someone’s idea of what their future quality of life would be and not because they are inherently close to death.”

The Farlows say they had no idea Annie was so close to death when she was taken to the Sick Kids emergency department on Aug. 11, 2005. They say they were told it appeared she might have pneumonia, which they assumed could be treated.

“Nobody has ever made an attempt to explain her issues to us or to suggest that her death was inevitable,” exclaims Barb who has since become an advocate for patient rights.

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Following Annie’s death, the parents ordered her medical records and have since been trying to piece together what happened in the final hours of her life.

They say a “do not resuscitate order” was placed on her chart two hours before they actually consented, something the caregivers involved deny.

A coroner-appointed pediatric death review committee, which reviewed the case, rejected the parents’ contention that necessary treatment was withheld from Annie and disagreed there is a culture of withholding life-saving treatment for some infants at Sick Kids.

However, it acknowledged there was a “communication and judgment error” surrounding a resuscitation decision:

“Annie’s final admission, with respiratory distress, was associated with a major decision about resuscitation being made under totally inappropriate circumstances, late at night, with only one parent present, by a physician who had only just met the parents; it appears that only this physician was present and discussions did not occur in an appropriate environment.”

In a report, the committee also wrote that the absence of some drug records “provided even more reason for the parents to question the circumstances of Annie’s death.”

Indeed, the parents say there is no record of what happened to a painkiller signed out in Annie’s name without written authorization.

A letter to the family from the hospital’s lawyer says a “verbal request” was made for the drug fentanyl by a doctor who wanted it on hand in case Annie was intubated. But the drug was never administered and any medications on the intubation cart “were likely disposed of” after Annie’s death. A letter from the physicians’ lawyer also says the drug was not administered the day of her death.

A 2006 letter to the Farlows from Sick Kids’ then vice-president Seonag Macrae and associate chair of clinical pediatrics Dr. Duane MacGregor acknowledged the hospital fell short in communicating with the Farlows.

“We do acknowledge that we could have improved upon ongoing communication between yourselves and staff who cared for Annie. Sometimes when we care for children such as Annie who have very complex care needs, and there are many individuals involved and consulted, communication does not occur in as clear and consistent fashion as we would wish. For that we are sorry.”

But the Farlows continue to wonder if there was more to her death — and continue their hunt for answers.