McMaster Children’s Hospital opens Indigenous families room in memory of Makayla Sault

Officials say creation of the space is a visible step toward reconciliation with indigenous communities

HAMILTON — McMaster Children’s Hospital took a historic act of reconciliation with an indigenous family this week with the opening of an Indigenous families room in memory of Makayla Sault.

Makayla was diagnosed with Acute Lymphoblastic Leukemia in 2014.

Makayla was the first of two First Nations children in Ontario to exclusively refuse chemotherapy as the sole form of treatment for Acute Lymphoblastic Leukemia at McMaster Children’s Hospital. Instead, her parents — Ken and Sonya Sault, honoured their daughter’s choice and what followed was months of fear for the indigenous family as doctors pursued a court order to put Makayla back in chemotherapy against her wishes.

The Sault family were told if they did not bring Makayla back to chemotherapy, Children’s Aid would apprehend Makayla and their other two children as well.
What followed was a national uprising of indigenous people, a critical national conversation about the rights of children versus the responsibility of medical professionals — and where indigenous traditions and medicines belong.

Makayla’s decision to continue fighting her illness without chemotherapy, and the national response of indigenous people to uphold that decision and protect Makayla’s voice in her course of treatment — forced the medical community in Canada to acknowledge paternalism toward indigenous patients, stop the trajectory, and launch a new path forward of truth and reconciliation.

The Saults’ said Makayla knew her prognosis was poor but insisted that she wanted to continue living her life with dignity and battle cancer on her own terms.
Ultimately, Children’s Aid announced it would not intervene in the family’s choice to stop chemotherapy. They then offered a public apology to the Sault family and their home community of Mississaugas of the New Credit First Nations.

Makayla died peacefully in her home at MNCFN in January 2015.

In November of 2015 Hamilton Health Sciences also offered the Sault family a public apology for the way they responded to Makayla’s decision.
MNCFN later launched a lawsuit against McMaster — but after meeting with hospital officials the family decided to pursue a new path of reconciliation and healing with McMaster Children’s Hospital.

Makayla’s mother Sonya Sault said, “Under our direction, the band dropped the lawsuit because we agreed to work with the hospital.”
One of the terms of the settlement was that McMaster, as an act of reconciliation with the indigenous community and the Sault family, would build a safe space for indigenous patients to meet with healers and hold traditional ceremonies and receive traditional medicine.

Now, four years later, the Sault family along with McMaster Children’s Hospital President Dr. Peter Fitzgerald launched the opening of ‘Makayla’s Room’ — in Anishnabe, Mkoonhs Zonghehgii (Iako’nikonhrahnira:ton in Mohawk)’— which according to information from the hospital is ‘a culturally safe space open to all Children’s Hospital families that would like to learn about or draw strength from indigenous culture and ways of knowing.’

“We just wanted that space set aside that they can feel at home, that they don’t have to feel threatened or scared if they were to choose traditional medicine,” said Sonya.

The room is historic, this is the first space McMaster has provided to indigenous families where traditional healers can work openly with patients inside the hospital without fear of being accosted or banned from things like smudging.

The opening of the room was led by the indigenous communities that surround the hospital. The Truth and Reconciliation Commission’s Call to Action 22 puts out a directive to those within the Canadian health-care system to recognize the value of Aboriginal healing practices and use them in the treatment of Aboriginal patients in collaboration with Aboriginal healers and Elders where requested by Aboriginal patients. The development of Makayla’s Room fulfills that call.

Located on the third floor at McMaster University Medical Centre, the room is open to all Children’s Hospital families. It features a small kitchenette, comfortable seating, activities for children and their families, as well as a space to store cultural supplies. The room was funded by the 2016 sale of the Hamilton Health Sciences’ Inuit art collection, which was then donated by the purchaser to the Art Gallery of Hamilton for its permanent collection. The room features a glass etching of Makayla and a colourful woodland inspired mural designed by renowned Haudenosaunee artist Jay Havens.

As part of the terms of the settlement McMaster University’s Indigenous Studies department will also be involved by providing educational materials and bringing elders into the space to share indigenous ways of knowing.

McMaster Children’s Hospital held an official room opening and dedication Tuesday for just over 100 guests to tour the room.
The reception also saw McMaster Children’s Hospital, the chiefs of Six Nations of the Grand River and New Credit First Nations and the Ken and Sonya Sault sign a dedication of the room, acknowledging that creating a culturally safe space for indigenous patients is a critical part of their care.

Dr. Peter Fitzgerald said, “For me it’s about developing relationships. We’ve had strong ties with Chief Ava Hill and Chief Stacey LaForme and some of the off-reserve indigenous organizations – but this is a visible piece of that. That work continues. It is a journey, it’s not something where there is an endpoint. That’s probably the biggest piece is how much we’ve learned as individuals and caregivers over the last several years. Lots of further things — not just at our children’s hospital but across the board at other Hamilton Health Sciences’ hospitals to have that more visibly culturally inclusive approach to our patient care.”

Rob MacIsaac, President and CEO of Hamilton Health Sciences said, “For Hamilton Health Sciences the opening of Makayla’s room represents an important milestone in our journey as an organization to becoming more culturally aware and a more welcoming place for all indigenous people.”
“I’m very optimistic that we’re on the right path and that we’re on that path together,” said MacIsaac. “I think we can all take heart that this is part of Makayla’s legacy – for her community and for Hamilton Health Sciences.”

Chief Ava Hill praised the family’s choice to pursue reconciliation with the hospital. Hill said, “I know the path to get here has been long and difficult and very painful – but we have to regard the opening of Makayla’s Room as a positive step and an act of reconciliation between the hospital, the communities and the families. Everyone is to be commended for taking that step of working together and getting us here today.”

New Credit’s Chief Stacey LaForme said Makayla leaves a legacy as a warrior who united her people. “She did in moments with her bravery and courage and heart what leaders today still can’t accomplish. She brought the nations of this country together – even if only for a moment. Maybe it didn’t last, but she showed us the possibility,” said LaForme. “The discussion on indigenous medicine and where we are at today wouldn’t have happened without Makayla’s inspiration.”