Fundamentally Flawed

"What are we going to do -- take her away from her loving family? We have to bring her into care so we can force chemotherapy on her?"
"I wasn't going to be able to base this decision on whether traditional medicine works. I don't know the relative merits of it."
Andy Koster, Brant Family and Children's Services

Makayla Sault, 10, has refused to continue with chemotherapy treatments to fight leukemia. (Connie Walker/CBC)

Mr. Koster was speaking wistfully and regretfully; does society have the right and the social obligation to remove an eleven-year-old little girl from the loving embrace of her supportive, nurturing family who want the best possible outcome for their child? Even if it means leaving that child with misguided people who, though fully engaged in the future well-being of their child, are also fully integrated into their First Nations heritage and their belief in spiritual and organic-herb-medicine healing?

Sonya Sault receives a gift from the Children's Aid Society after it announced the case is closed and Makayla will stay with her family. (Two Row Times/Twitter)

Should a children's aid society, dedicated to the welfare of area children, given the legal tools by law to make such decisions -- whether to remove a child to their care when parents insist it is their right to determine their children's future outcomes even if that decision runs counter to societal norms in the understanding that the community turns to medical science to help heal dire medical conditions -- surrender to the perceived need to be sensitive to aboriginal tradition?

Makayla has undergone one round of chemotherapy at McMaster Children's Hospital in Hamilton where she is being treated for Acute lymphoblastic leukemia. She has an unusual form of the malady named "Philadelphia chromosome-positive", present in between 3 percent and 5 percent of children with the disease. ALL has had a dismal prognosis, in comparison to those treated for the more common form of the disease for whom the long-term survival rate is now 85 percent to 90 percent.

Back in 1962, Acute lymphoblastic leukemia had a survival rate of about 5 percent. But now, and since 2009, when a team of researchers at British Columbia Children's Hospital in Vancouver added an additional ingredient to the chemotherapy protocol, a new bullet-type drug whose type is called imatinib, the prognosis has been altered. The result, thanks to intensive dosing of chemotherapy with the additional ingredient, has seen clinical trials have triumphing with a doubling of "event-free survival".

The BC Children's Hospital team this year conducted a longer-term follow-up to the study, reporting in the journal Leukemia that outcomes had significantly improved for those with Makayla's type of ALL from about 25 percent to 70 percent. Doctors at the McMaster Children's Hospital believed that Makayla's leukemia could be cured. They have expressed alarm and concern over her removal from the chemotherapy program, that she will now be placed at great risk.

Makayla had decided, after her initial and only round of chemotherapy that she preferred to be taken off the protocol. Feeling ill and with no confidence in the procedure, she and her parents decided they would all prefer that Makayla submit to traditional native medicine procedures. That its efficacy is unknown, that research has never been conducted with a view to assessing its usefulness, appears to be of little concern to her parents, the child and their many supporters from within the First Nations community.

This child from the New Credit First Nation in southern Ontario, stricken with acute lymphoblastic leukemia of an acute form is now to be treated by Ongwehowe Onongwatri: yo:, administered by a traditional healer from Six Nations, a reserve not far from where her own is located. The treatment represents "protected knowledge", passed from healer to healer through the generations and orally. To the protests arising from within the area medical community, one native official recommended that the McMaster staff receive cultural competency training.

While all concerned cannot be faulted for anything but reacting to this child's serious illness with care and concern, from the hospital to the child welfare agency, to her loving, supportive parents, it is not entirely clear whether those belligerently supporting the family's decision to go with traditional healing rather than proven medical practise are not viewing this event as yet another manner in which 'white' culture is impacting deleteriously on First Nations and therefore to be rejected.

No one questions the First Nations right to practise what they hold dear in their traditional culture; it is merely the competence of that traditional medicine that is open to question. For the Brant Children's Aid Society, this case is now closed. For the Hamilton area medical community this case represents a fearsome denial of medical science. For the family of Makayla Sault, it represents what may very well turn out to be a misplaced hope.