NEW CREDIT – Makayla Sault, daughter of Pastors Ken and Sonya Sault has taken a very brave and bold move to assert herself. The 11 year old, who was diagnosed with an aggressive form of leukaemia in January, has asked her parents to stop chemotherapy treatments and instead give her Ongwehowe Onǫhgwatri:yo: (traditional medicines).
They have done so, and now McMaster Children’s Hospital says that they have a fiduciary responsibility to report the Sault’s to the Children’s Aid Society for keeping Makayla out of chemotherapy. Additionally, despite hours of consultations with various physicians, and indigenous officials, McMaster Children’s Hospital is pursuing a judicial process with the Consent and Capacity Board, a provincial body, to determine if Makayla or her family are of sound mind.
If the Consent and Capacity Board deems that Makayla and her parents are not of sound mind to make this decision, all involved are concerned that the Children’s Aid Society will move to apprehend Makayla from the New Credit First Nation and force her into chemotherapy, thereby derailing the Ongwehowe Onohgwatri:yo: process she is on.
That decision also would violate Articles 10 & 24 of the United Nations Declaration on the Rights of Indigenous Peoples; that indigenous people cannot be forcibly removed from their lands without free and prior consent, and the right to use traditional medicines and health care practices without discrimination.
Makayla was diagnosed with Acute Lymphoblastic Leukemia (ALL) but also tested positive for the Philladelphia chromosome. This particular combination makes an aggressive form of leukaemia which, from a pharmaceutical perspective, requires two years of aggressive chemotherapy treatment with a survival rate of 75%.
However during the 11 weeks of chemotherapy that Makayla did complete, which brought the ALL into remission, the child endured acute side effects, including constant nausea, weakness, muscle wasting and a ten pound weight loss.
Pharmacists prescribed the child a variety of anti-nauseants, including medical marijuana to try and help control the vomiting, but there was no relief, leaving many in her team struggling to find a solution to alleviate Makayla’s severe side effects. “They kept saying that she is our mystery child,” said Makayla’s father Ken Sault, a well known Pastor of the New Credit Fellowship Centre.
“Coming to the last weeks of her treatment alarms started to go off inside of me” said her mother, Sonya. “It was that maternal instinct that told me that we’re not doing the right thing with her. She was so weak that when you went to go and talk to her you would have to get right down just to be able to hear what she is saying.” Sonya said. “I remember Makayla said to me, ‘Mom I can’t take this anymore. I want you to get me out of here. I don’t want to go this way no more’.”
The Saults’ were allowed to take Makayala home for a break from chemo. That is when the child spoke up and asked her parents for help. Her mother explained, “Makayla said to me, do you have the power to get me out of there? If you have the power to take me out of there I want you to take me out of there. I’m telling you mom it’s not right. The way that we are going it’s going to kill me.”
In the meantime, the child had a spiritual encounter where she says Jesus appeared and told her that she was healed. This encounter has been revered by the traditional healers and members of the New Credit First Nation, but the medical team told the family that in light of her spiritual encounter, she needed a psychiatric evaluation.
Taking all of this information, and Makayla’s specific request to stop chemo and instead use Onǫhgwatri:yo:, the family came together of one mind and is now treating the child via a traditional healer on Six Nations.
Hamilton Health Sciences has a number of Aboriginal Patient Navigators on staff to help medical officials and indigenous patients communicate effectively. However despite the hospital being next to Six Nations, which is the largest Indian Reserve in Canada, they do not have a current protocol in place for children whose families opt for Ongwehowe Onohgwatri:yo: instead of pharmaceutical therapy.
Because the hospital has no current protocol for indigenous families pursuing traditional medication in lieu of pharmaceutical treatment for children, staff feel that their hands are tied and that they need to bring this matter to a higher level of consultation with the Children’s Aid Society and the Consent and Capacity Board.
The Sault’s said that in a previous meeting one of the members of the team assigned to Makayla’s case told them that if they did not proceed with the two year protocol of chemotherapy for Makayla that Children’s Aid would become involved and that all three of the family’s children would be apprehended.
Apprehending children for preventing them access to chemotherapy is not a situation unheard of in Ontario. In 2008 an 11 year old Hamilton boy was temporarily apprehended by the CAS during a routine visit to McMaster and his parents were handcuffed and escorted out of the hospital by security after they refused to continue chemotherapy at the boy’s request.
The Saults say they are not refusing treatment, only one form of treatment via chemotherapy.
The family has put together a number of meetings with the staff of McMaster including the lead physician overseeing Makayla’s chemotherapy. McMaster proposed a compromise to combine chemo and Ongwehowe Onohgwatri:yo:, however the family declined stating that the chemo makes the child too sick to keep down the medicines traditional healers would be administering.
As for Makayla, the traditional medicines have helped her put the weight back on that she lost while in treatment. She isn’t vomitting anymore and she will be entering the track and field meet at her school in the coming weeks.
The CCB hearing date is not set at this time.