DECISION ON AILING GIRL HUMANE, BUT MEDICALLY QUESTIONABLE
Child wins right to nix chemotherapy in favour of risky traditional healing
It’s the rare story where almost everyone — almost — has acquitted themselves with honour, but such is the case of Makayla Sault.
She’s the 11-year-old from the New Credit First Nation in southern Ontario who is stricken with an unusual form of acute lymphoblastic leukemia, or ALL, the most common childhood cancer, and who has been in the news of late as she and her family fought to stop her chemotherapy treatments in favour of traditional native medicine.
She and her parents won that battle this week when the local children’s aid society, Brant Family and Children’s Services, closed its investigation, ending the threat of a possible apprehension and allowing Makayla and her parents, Ken and Sonya, to proceed as they wish.
As Andy Koster, the agency’s executive director, puts it, his decision wasn’t a medical one, but a humane one.
Makayla’s family is loving and close, he said; she had been through the mill already with the first round of aggressive chemotherapy, and the little girl herself is bright and had begun work on a formal declaration of her wishes.
“What are we going to do — take her away from her loving family?” Koster wondered aloud in a telephone interview on Wednesday. “We have to bring her into care so we can force chemotherapy on her?”
He said he recognized, “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.” Rather, he said, he based it on Makayla’s emotional and spiritual needs.
It was a kind decision, rare in a world where children’s aid societies have been less than quick to respect the cultural values and traditions of other groups, such as the Mexican Mennonites (where in 2002 Child and Family Services of St. Thomas and Elgin County seized seven of the most ridiculously hale youngsters you ever saw from fundamentalist Christian parents whose church advocated physical discipline) or, more recently, the ultra-Orthodox Jewish Lev Tahor sect (where last year the Chatham-Kent Children’s Services launched a court battle to seize custody of 14 children and return them to Quebec, where they had been originally ordered into fos-
There was much talk about the family’s and the First Nation’s need to protect their rights and about culturally appropriate treatments.
ter care amid allegations of abuse and, well, cultish behaviour).
The Brant agency had been called in by doctors at McMaster Children’s Hospital in Hamilton. The doctors, like all professionals who work with children, have the hard-and-fast legal obligation to alert child-welfare authorities when a child is at risk.
The doctors at McMaster did their job — a different job — equally well.
Acute lymphoblastic leukemia is a big success story in the cancer world. In 1962, the longterm survival rate was about five per cent; now, overall, between 85 per cent and 90 per cent of these patients make it.
But Makayla has an unusual form of ALL called “Philadelphia chromosome-positive” which is present in only between three per cent and five per cent of children with the disease and which has been one of the stubborn subsets, with grim prognoses.
But in 2009, a team of researchers, led by Canadian Dr. Kirk Schultz at BC Children’s Hospital in Vancouver, added a little something to the normal protocol of chemotherapy — one of the new, smart, bullet-type drugs called imatinib.
With intensive dosing of that, as well as intensive chemotherapy, the team more than doubled what’s called in clinical trials “event-free survival” ... meaning, no recurrence or spread of the disease — for children and teenagers with Philadelphia chromosome-positive ALL.
And just earlier this year, after a longer-term followup to that study using the same doublewhammy of regular chemo and imatinib, the team reported in the journal Leukemia that happy outcomes for those with Makayla’s type of ALL jumped from about 25 per cent to 70 per cent.
In other words, her doctors at McMaster had good reason to believe she has a real shot at beating this thing — and that stopping the treatment, after only one round, would put her at risk.
Enter traditional native medicine, the efficacy of which is entirely unknown. The little girl’s family has said she will be treated via “Ongwehowe Onongwatri: yo:,” delivered by a traditional healer from Six Nations, a reserve near her own. Details of the treatment are considered “protected knowledge,” passed down only orally, and virtually no research on any of the practices, whatever they may be, has ever been done, and no scientific literature exists.
In the week or so between the time the hospital called children’s aid, and the Brant agency’s decision to close the file, there was much talk about the fam- ily’s and the First Nation’s need to protect their rights and about culturally appropriate treatments.
A “Makayla defence force” even sprang up, lest authorities attempt to intervene and remove her from her family.
One native official suggested that staff at McMaster should receive cultural competency training.
No one would wish anything but a full recovery for this little girl, and the institutions involved — the hospital, the children’s aid — and her parents have all acted in what they believe is her best interests.
But if any of the parties need training in cultural competency, it would be the traditional healers whose culture isn’t in doubt, but whose competency very much is.