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By Hilary White

TORONTO, April 16, 2009 ( – The parents of a disabled baby girl, who died in 2005, have launched a human rights complaint against Toronto’s Hospital for Sick Children. The parents allege that the hospital placed a “do not resuscitate” order on the child without their consent and otherwise refused to provide normal care that could have saved her life.

Timothy and Barbara Farlow say that the hospital failed to give their daughter Annie proper medical care because she was disabled. Annie suffered from the non-fatal genetic disorder Trisomy 13 and died 80 days after her birth.

Lawyers for the hospital say that the parents’ claim, filed with the Ontario Human Rights Commission, is not valid because it was not filed within six months of the child’s death. A preliminary hearing on the complaint was held in Toronto on April 14 and the Commission is expected to make a decision within a month.

Mrs. Farlow said, “I think every child regardless of their disabilities deserves a chance at life and if the treatment or surgery is not in their best interest, then they deserve a dignified, comfortable and peaceful death.”

The Farlows said they objected to a hospital policy to provide only “supportive care” for children with serious genetic conditions.

But the hospital is adamant that all children receive the same standard of care. Denis Daneman, pediatrician-in-chief, told the Toronto Star, “Every single patient at this hospital receives the best care at each and every stage of their stay with us.”

Trisomy 13, also called Patau syndrome, is not a fatal condition. It is a chromosomal abnormality that can bring a variety of developmental problems including heart defects, structural eye defects and learning disabilities, some of which can be corrected with surgery. Physical, occupational, and speech therapy can also help Trisomy 13 individuals reach their full developmental potential.

Annie Farlow was born at full term at seven pounds, with normal vision and hearing. At birth, she suffered from hypoglycemia and mild pulmonary edema and was kept in hospital for six weeks for observation; but she did not suffer from the heart condition doctors had feared during pregnancy. During her initial stay in hospital, one doctor, a pulmonologist, proposed surgery for what he believed to be a condition with her trachea, but this suggestion was overruled by the Farlows’ primary care physician. Annie was taken home to her family and began to thrive.

On her 77th day, however, Annie was taken to hospital again with “periodic respiratory distress” and flushed cheeks. At Toronto’s Hospital for Sick Children, Annie’s primary pediatrician told the family to wait and ordered no tests. They were told that Annie was suffering from pneumonia, a diagnosis that was later reversed.

Annie later experienced more serious problems breathing and after 1 ½ hours of manual artificial respiration was still not transferred to the intensive care unit, despite the hospital policy of transferring such patients after only 15 minutes on artificial respiration. According to a nurse who examined the child’s medical records, no call was made to the ICU for an hour after Annie’s respiratory “crash” and none of the normal alarms were given to stabilize the child’s condition.

After doctors said that Annie was not suffering from pneumonia but from a collapsed trachea, and faced the option only of a dangerous surgery, her parents agreed to allow their daughter to be removed from the monitors. Annie died the following day.

However, Barbara Farlow said that she and her husband began to realize a few days later that “something wasn’t right” with the decision making processes and communication from physicians at the hospital.

She said, “I didn’t think that the decision-making process was appropriate. How could it be that we were told Annie’s trachea was fine and she had pneumonia in the emergency department, and then 24 hours later this diagnosis had been reversed in the ICU? We had been exhausted, and I felt that we had been forced to make a decision in a coercive and inappropriate manner.”

She said that she also learned that there was no diagnostic basis for the dangerous trachea operation that had been described to them; there were several less severe possibilities.

A nurse with ten years’ experience in critical care later confirmed after examining Annie’s medical records that Farlow’s instincts had been correct. In addition to the numerous warning signs that Annie was not receiving a normal standard of care in the hospital, some hours before her death a “do not resuscitate” order had been placed in Annie’s records, without her parents’ knowledge or consent.

Read a full account of Annie’s Story:

Part I
Part II

More on Sick Kids Hospital:

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Sick Canadian Newborn Whose Parents Want to Use as a Heart Donor Not “Terminal” Say Disability Rights Activists