After the Error

Speaking Out About Patient Safety To Save Lives

By Susan McIver, Robin Wyndham

ECW PRESS

Copyright © 2013 Susan McIver and Robin Wyndham
All rights reserved.
ISBN: 978-1-77041-110-4
CHAPTER 1

A CHILD LIKE ANNIE

Annie Farlow’s 80-day-long life affected her parents and siblings in ways they never could have imagined. Her family, who had no previous experience with disabled children, loved Annie with all their hearts. When she died in August 2005, their grief was compounded by the discovery of circumstances associated with her care, which shattered their faith in her doctors and their hope that Annie would be seen as a person and not just as a syndrome. The Farlow family’s experience answers the question that is so often asked of parents, both before and after a birth associated with genetically different children: Who wants a child like that anyway?

Annie’s brief life transformed her mother Barbara into an internationally respected parental voice in pediatric ethics. Through Barbara’s work, Annie’s story led to the largest survey ever of parents who have children with similar disabilities and the inclusion of those findings in the medical literature, which was previously lacking the parental perspective.

Barbara has consistently encouraged a much-needed and important discussion about the issues of medical care provided to, or withheld from, infants born with genetic differences, both in hospital and in the broader medical community. She recognizes and respects that some parents might make different choices than she did when they learn that their unborn baby will have disabilities. Families may also differ in their attitudes toward withholding treatment. Either way, their wishes should be respected through a process that is transparent and accountable.

Barbara joined with leading health-care professionals, patient advocates, ethicists and policy makers to tackle questions made especially difficult in this time of increasing resource scarcity in health care. When is it appropriate to limit or withdraw potentially beneficial treatment? Who should make those decisions? How should decisions be made?

The Farlows wanted Annie to be provided with the same treatments and interventions as any child without a genetic label or disability would be offered. They believe doctors made unilateral decisions which should have been made openly and in consultation with them. As a result of the secrecy in which decisions seem to have been made, Annie may have been denied not only an opportunity for a longer life, but also timely palliative care.

The author of numerous publications in prestigious medical journals and other respected health-care publications, Barbara has spoken to scores of hospital associations, medical schools, advocacy groups and ethics conferences. She has made presentations to the United Nations High Commission on Human Rights, the World Health Organization and Pan-American Health Organization. Barbara appeared before the Canadian Parliamentary Committee on Palliative and Compassionate Care, and her husband, Tim, spoke before the Ontario Provincial Parliament’s standing committee on social justice.

Annie

In early 2005, Barbara and Tim Farlow were faced with a choice that would shape the rest of their lives. High school sweethearts, the Farlows had five children at home who excelled in school and sports. They were financially comfortable, enjoyed excellent health and were delighted when they learned a new baby was on the way.

Prenatal screening at 21 weeks revealed that their baby girl had a condition called trisomy 13. Many children with this genetic condition die at