“Is this racism? Negligence? asks Marie-Rose Piétacho. The Innu woman does not know how to qualify the experience she had with her eight-month-old daughter at the hospital in Havre-Saint-Pierre, on the North Shore. But she is convinced of one thing: if she hadn’t taken her emergency baby to Montreal herself, her daughter would be unable to walk as she does today.
Aby Piétacho will be two years old at the end of the month. In front of the photographer To have to, she raises so many fingers with her small hand, smiles and laughs shyly. She moved to Quebec with her mother for treatment. She has to wear a corset for three hours a day. But it could have been worse.
Aby’s health troubles started at the end of 2020. Bruises appeared on his body. Then, a bump emerged on her lower back in early 2021. The little girl was then eight months old. Worried, her mother went with her to the hospital in Havre-Saint-Pierre, about thirty kilometers from the community of Ekuanitshit (Mingan), where they lived.
Between December 2020 and March 2021, the mother and her baby thus made the round trip five times. Each time the staff fired Mme Pietacho and his daughter at home. “It grew, it grew, but it was never serious for them”, she tells the To have to.
If we had not treated [la masse]it would have continued to proliferate, proliferate, and it could have paralyzed lower limbs
In Aby’s medical records, observations about the lump are recorded from January 16, 2021. The “mild induration” observed that day evolves to measure “8.5 cm in diameter by approximately 7 mm thick” on February 25. On March 2, the hospital staff noted a “slight progression” of the mass, which had become “sensitive”.
A doctor writes while Mme Piétacho wishes to obtain another medical opinion in Montreal. But an “ultrasound would be more relevant[e] to investigate (sic) the hematoma”, he underlines.
Mme Piétacho remembers this meeting. “The doctor looked at me really close and he said to me: ‘Even a surgeon will tell you the same thing'”, she relates. ” I said no. I’ll go and take it myself [à Montréal]””. 1000 kilometers from home.
While M.me Piétacho was heading for Montreal, little Aby was transferred to an airliner with her aunt Kateri Napish. The Ekuanitshit Band Council paid for the transportation.
The federal government initially refused to cover the costs, despite Jordan’s Principle, which must ensure access to care for the country’s indigenous children (see box).
“We did not take time to find out if there would be a refund or not. […] Our priority was to find a formula to make Aby as comfortable as possible,” recalls Ekuanitshit’s chef, Jean-Charles Piétacho. “It was the mother’s instinct that decided. »
It is therefore in Montreal, more than a twelve-hour drive from home, that Ms.me Pietacho says she was finally taken seriously. “I was afraid to go there. [et] tell me that I had come for nothing. But that’s not what happened. When we saw the first doctor, he said it wasn’t normal,” she recalls fondly. “The doctor said: ‘You did well to bring your daughter here,'” adds her mother, Évelyne.
Marie-Rose Piétacho learned that a complex vascular tumor was twisting the spine of her little Aby.
After a 19-day hospitalization at the Montreal Children’s Hospital, the child was transferred to the CHU de Québec, a little closer to home. Aby’s parents spent two months in the capital – from the end of March to the end of May 2021 – without being able to return to Ekuanitshit to be with their older children. Their baby was finally able to start specialized treatment.
risk paralysis
At the CHU de Québec, pediatric hemato-oncologist Valérie Larouche took Aby under her wing. She remembers the urgency of this file. “If we had not treated [la masse]it would have continued to proliferate, proliferate, and it could have paralyzed lower limbs,” she told the To have to.
The DD Larouche did not follow Aby during his visits to the hospital in Havre-Saint-Pierre. She stresses that she does not wish to comment or judge the work that was done before the little girl became her patient. The doctor agreed to discuss Aby’s case after the child’s parents gave her permission.
The hematologist-oncologist explained that by the time she began to treat the child, the mass on his back had taken on worrying proportions. “It infiltrated and compressed the spinal cord. It had invaded the paraspinal muscles around the spine. It pushed back the liver and it eroded three ribs, ”she lists. “We couldn’t just observe. When we see all this […], must be treated. It goes without saying. »
To reduce the size of the mass, Aby has therefore been receiving oral treatment since March 2021, which is personalized, based on the results of a biopsy carried out at the Montreal Children’s Hospital. “We had an excellent, rapid response at the start of the treatment”, welcomes the DD Larouche.
A year later, in March 2022, the doctor noted that the treatment had resulted in “a two-thirds reduction in the volume of the vascular mass”. “She really has a great response [au traitement] “, underlines the specialist.
Mme Piétacho and his daughter settled in Quebec. “I’m more reassured here than there,” says the mother, recalling her experiences on the North Shore. Aby walks, but remains followed in orthopedics “because she has scoliosis secondary to the malformation [causée par] the mass, near the column”, explains the DD Larouche.
The CISSS de la Côte-Nord refused to comment on Aby Piétacho’s file, due to “confidentiality issues”. “It is important for us to be informed when users are dissatisfied, either by contacting the Native Liaison staff or through the complaint process with the Service Quality and Complaints Commissioner,” said all the same, let the spokesperson for the establishment, Pascal Paradis, know. “We invite the family, if it has not already been done, to file a complaint with the complaints commissioner if they are dissatisfied with the services received”, he also underlined, recalling that a translation and “culturally safe accompaniment” would be offered to Aby’s loved ones as needed.
Racism?
By retracing the story of the last few months, the members of the Piétacho family say they resent the professionals at the hospital in Havre-Saint-Pierre. “We are tired of being told to go back home,” summarizes Evelyne Piétacho. “‘Take some Tylenol, put some ice,'” adds Aby’s father, Russell Malec. It imitates the speech of health professionals, the same as many Aboriginal people described in To have to over the past year.
We invite the family, if it has not already been done, to file a complaint with the Complaints Commissioner if they are dissatisfied with the services received.
Grand Chief Pietacho sees something “very revealing” in the experience of Aby’s family. “We are talking about systemic racism. We live it. There are many cases, events that have happened, but no one talks about it, ”he laments. He points out that many Aboriginal people are reluctant to file a complaint, for fear that “it will not work”.
The CISSS de la Côte-Nord assures that it has “the will […] to offer culturally safe care and services in its facilities”. The institution now has two Senior Native Liaison Advisors and a Service Navigator. “The addition of another service navigator and another liaison officer is planned in the short term”, says Pascal Paradis.
We are talking about systemic racism. We live it. There are many cases, events that have happened, but no one talks about them.
In addition, “approximately 40%” of CISSS employees have received the cultural safety training now required by the Ministry of Health. The establishment also plans to develop, “in the coming months, its own training in order to make better known the regional specificities of the realities of the First Nations”, adds the spokesperson.