It took the death of a three-month old baby in Canada to point out serious deficiencies in the ethical aspects of medical care for children with disabilities.

Annie Farlow was born in Toronto in 2005. Before her birth, her parents were informed that she suffered from a genetic disorder called Trisomy 13 that very often causes heart, lung and other problems that cause death within days or months. A few children live to ten years of age. After careful research, Barbara and Timothy Farlow decided to give their daughter the best life they could and allowed the pregnancy to proceed instead of terminating it.

When Annie was born, she showed no signs of the health conditions normally associated with Trisomy 13. Apparently, she was mildly affected by the condition. After several weeks in the hospital, she went home and thrived, even getting a little chubby by the time she was 80 days old.

At that point, she was rushed to the hospital with respiratory distress where things got very confusing and contradictory. Her parents were told that she had pneumonia, which later turned out not to be true. They were also told that that to survive, she would have to undergo surgery that she might not survive. (To this, a later Coroner’s Death Review Committee commented: “…it was by no means certain that she would have to undergo prolonged interventions such as prolonged ventilation or distressful surgery.”)

It was recommended to the parents that they agree to a Do Not Resuscitate order without being fully and correctly informed of their daughter’s actual condition. In fact, there was no specific cause of death, no organ failure that could be identified as being imminent. When Annie began to struggle to breathe, no action was taken to help her. She died of asphyxiation shortly afterwards.

But for the parents, all the facts in Annie’s care did not add up. They began to investigate and request official reviews of their daughter’s care. They found that medical records pertaining to the administration of medications to their daughter in her last few hours were missing, as were records of the whereabouts of a lethal dose of fentanyl, a very strong narcotic that can cause death from respiratory suppression.

A Coroner’s Death Review Committee report made this statement about Annie’s medical care the day before she died: “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.”

In a letter to Annie’s physician, the parents state, “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.”

The parents have yet to receive any explanation or accountability for the actions that resulted in this child’s death. But to make some sense from her loss, Annie’s mother Barbara has appeared as a speaker at dozens of medical and legal conferences across the U.S. and Canada, educating attendees on medical ethics and quality of life issues. Source: Annie Farlow website, Overview, February 16, 2010, http://www.anniefarlow.com/overview.html Source: Justice for Annie group, February 17, 2010, http://www.facebook.com/group.php?gid=76792569122&ref=ts