I Chose to Remove My Baby's Life Support and Feel Guilty
Taking Edmonton baby off life support is 'kindest' option, judge rules after mother fights to keep her alive
A baby born in Edmonton earlier this year touched off the latest in a string of emotional end-of-life court battles, a just-released written ruling reveals
A baby born in Edmonton earlier this year touched off the latest in a string of emotional end-of-life court battles, dying after a judge said removing her from life support was the "kindest" option available, a just-released written ruling reveals.
Ava Chalifoux-Campiou was so severely disabled by a deadly genetic defect, she often looked in pain and even had a "silent cry," medical staff said. They insisted she be allowed to succumb to her condition peacefully.
Her mother, though, said the girl was a "fighter" and opposed disconnecting her from a ventilator. Still grieving over the deaths of two other children, Roseanne Chalifoux took the hospital to court.
The issue of who has the final say on life-and-death medical treatment remains legally hazy in most provinces, despite numerous court clashes.
The focus should be on changing Ava's care to comfort and palliation…. This is thought to be the kindest and most appropriate care
Justice Debra Yungwirth eventually sided with the hospital, citing both the girl's best interests and the "great moral distress" of staff caring for the suffering infant.
"Ava's condition is lethal. It is a condition from which she cannot recover. She is being kept alive by machines," said the Court of Queen's Bench ruling. "The focus should be on changing Ava's care to comfort and palliation…. This is thought to be the kindest and most appropriate care."
But the judge rejected the hospital's position that it needs neither the consent of the family nor approval of a court to withdraw life-preserving treatment, as at least one other court has ruled in the past.
The judge actually decided the case orally in mid-August, but it has only come to light now with her written judgement. Ava died shortly after the artificial breathing machine was unplugged, said Lydia Bubel, lawyer for the mother.
Ms. Chalifoux could not be reached for comment, but her lawyer lamented that there remains no national law or policy governing how to settle such disputes, leaving them to be resolved by sometimes-contradictory court rulings.
"These end-of-life decisions are being made piecemeal in various different jurisdictions," said Ms. Bubel. "Canada has universal health care, and we should have a similar process running through all of Canada."
One case made it to the Supreme Court of Canada last year. But rather than solidify the law nationally, it focused mainly on unique Ontario legislation that steers disputes to an appeal board, a system that exists in no other province, the lawyer noted.
A spokesman for Stollery Children's Hospital, where Ava lived her brief life, said the facility would not comment on the ruling.
Canada has universal health care, and we should have a similar process running through all of Canada
Ms. Chalifoux is from Driftpile First Nation northwest of Edmonton, making the case one of several end-of-life battles involving members of racial or religious minorities, and leading one bio-ethicist to suggest distrust of health-care authorities could be a factor.
"It may suggest the family has insufficient confidence in the medical team to trust their judgement, that they are acting in the best interests of the patient," said Juliet Guichon, a community health-sciences professor at the University of Calgary.
Ava was born in May with thanatophoric dysplasia or dwarfism, a usually lethal defect where bones do not grow properly. Among other effects, it prevented the baby's chest from accommodating her lungs, making it all but impossible to breathe without a ventilator.
Sedated because of the breathing tube down her throat, she was subject to repeated procedures and tests that would cause pain and discomfort, the ruling said.
She is at times unsettled, displays painful face expressions and has a silent cry
Her chart indicated that "she is at times unsettled, displays painful face expressions and has a silent cry," Justice Yungwirth wrote.
Finally, on July 8, Roseanne Chalifoux received a letter from doctors saying that they would remove the baby from the ventilator two days later, prompting her to obtain a lawyer.
The mother never spelled out in detail why she wanted an injunction to keep the baby alive, but indicated that she felt Ava was a fighter and told a doctor she was "hoping for a miracle."
The decision reveals a troubled parent, though, who was in jail during some of the dispute. Ms. Bubel said she could not reveal the reasons for the imprisonment.
The mother did not visit her baby every day, usually spent no more than an hour with her when she did, and told doctors she did not want to become attached to the girl, the ruling says. One physician described Ms. Chalifoux as "fragile and grief-stricken" after she lost one baby to sudden infant death syndrome in 2012, and another to stillbirth in 2013.
"Discussing care for Ava with her parents has been a challenge for her physicians and the health-care team," said Justice Yungwirth.
National Post
• Email: tblackwell@nationalpost.com
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I Chose to Remove My Baby's Life Support and Feel Guilty
Source: https://nationalpost.com/health/taking-edmonton-baby-off-life-support-is-kindest-option-judge-rules-after-mother-fights-to-keep-her-alive
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