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10/28/2013 6:00 PM

Barb Farlow was 22 weeks pregnant when her prenatal diagnosis revealed her daughter had Trisomy 13 and 18. 

The genetic condition sees many babies die before birth, during labour, or shortly after birth. Just 10 ten per cent of children survive beyond one year, living disabled but happily with their families.

Barb and husband Tim anticipated that they would be partners in their daughter's care, making critical decisions about interventions or palliative care with the guidance of respected physicians.

"We needed to know that we had made the right decisions, that we had no regrets. We wanted to consider interventions, but we didn't want her to have a life of suffering," says Barb.

Annie was born full term. The seven-pound baby had no sign of the predicted heart condition, nor of the brain disorder — the two major conditions that affect longevity. At six weeks she came home. Her siblings and parents celebrated.

But at 77 days old, Annie developed episodic respiratory distress. Her face turned and stayed red.

Their local physician said it looked like a floppy trachea, a condition that usually resolved itself. Two days later the physician at the children's hospital said the same.

That night, Annie had a more severe attack of respiratory distress. She was rushed to children's hospital where the diagnosis was pneumonia, something that could be treated with antibiotics, says Barb. Her trachea, they said, was fine.

Then Annie was taken to ICU, placed on a mask to help her breathe. The ICU doctor asked Barb and Tim if he should resuscitate her if she were to stop breathing.

"I said yes. We'd been told it was pneumonia, children recover from pneumonia,” says Barb. “Then the doctor went on about dying with dignity. I responded that we needed to make an informed decision. We needed to know what the cause of our daughter's distress was so we could decide whether or not we could and should fix it."

Later that night the ICU doctor said Annie needed surgery for a narrow trachea, a procedure with a high mortality rate for healthy children. Tim and Barb took turns sitting with Annie. On Tim's shift, Annie's numbers started to plummet. There were no alarms. The nurse was absent. Tim called for help to no avail. Eventually Annie's primary doctor arrived. He said it wasn't pneumonia.

Do you want to intubate?

"The surgery described was not in Annie's best interest,” says Barb. “Putting her on life support wasn't fair to her. We agreed not to resuscitate. Annie passed shortly after."

Confused about the misdiagnosis of pneumonia, the Farlows obtained the medical records. They discovered that a Do Not Resuscitate Order had been placed before they had provided consent. In time, the Coroner’s Paediatric Death Review Committee reviewed the records and declared the final care provided to be inappropriate, adding that the surgery described was by no means certain.

"We were distraught by this violation of our parental authority and trust and are not sure if our daughter might still be living” says Barb.”.

While presenting Annie’s story at a health conference, Barb met Dr. Annie Janvier, a Montreal neonatologist. She was encouraged to undertake a thorough literature search of everything published about Trisomy 13 and 18. Barb discovered the literature was negative, stressing death and disability, and missing the family perspective.

Barb, Dr. Janvier and Dr. Wilfond of Seattle Children's Hospital agreed something had to be done to provide a voice for children like Annie and to include the family and parental experience in the literature. They collaborated and developed a survey for parents and physicians, asking what doctors wanted to hear and what parents wanted to tell doctors. It was the largest sample size ever on this cohort of parents.

The result? A paper published in Pediatrics, the most well-read pediatric journal. Pediatrics issued a news release and 60 articles in five languages appeared in media around the world with headlines like Disabled Children Enrich Families. Barb says their research is used around the world, presented at major pediatric conferences in Canada and the United States.

Parents of disabled children were excited about the paper, saying the challenge of raising a medically fragile child was nothing in comparison to finding doctors who understood. When the paper came out, parents created a collage of hundreds of children's pictures with the words “Our Community Has A Voice” along with the name of the research paper. The poster hangs proudly in the offices of the collaborating physicians.

Barb says previous medical literature didn't address the family experience and too often doctors assumed sending a child with a limited life span home didn't benefit the family or the child. They viewed and provided treatment through that lens.

"Now everybody has a complete picture in the medical literature — the medical aspects and the quality of life. Because a child can’t be ‘fixed’ doesn’t mean that their life is not of value. The families’ perspective is essential,” says Barb. "Families need to make informed decisions as they will live with the death of that loved one for the rest of their days."

Annie changed Barb's life.

"I've been a member of Patients for Patient Safety Canada for over six years. It means a lot to me to support other members who tell their stories or work toward improvements in care. I wish more people would work collaboratively, to understand the challenges in care and to contribute to improving healthcare. It's our public system," says Barb.  Patients for Patient Safety Canada is a patient led program of the Canadian Patient Safety Institute.  Patients for Patient Safety Canada works to ensure that healthcare organizations and systems include the patient and family perspective when making decisions and planning safety and quality improvement initiatives

Barb is also the honorary patient perspective board member for the International Society for Quality in Healthcare.

"It's been an eye-opener. It really rebuilds my trust and confidence to see wonderful people working really hard to affect the care of people around the world. I do my best to consult and to bring the patient voice to them. "

Barb’s determination to continue to ASK.LISTEN.TALK. with Patients for Patient Safety Canada encourages the message from Canadian Patient Safety Week “Good healthcare starts with good communication”.  Learn more about Canadian Patient Safety Week October 28 to November 1, 2013 at www.asklistentalk.ca.