The federal government has finally agreed to give to the people of Grassy Narrows First Nation results of tests done decades ago for mercury in blood from their umbilical cords.

Mercury levels found in these samples were high enough to affect brain development, according to a 2016 scientific report that also said exposure in the womb can cause co-ordination problems and speech disorders.

But Health Canada had refused to reveal the names of nearly 150 residents who were identified at birth by health officials as being at risk for mercury poisoning, the Star first reported in September 2016.

At the time, the regulator cited privacy concerns surrounding the program that saw the umbilical cord blood of babies tested between 1970 and 1992. The Star later learned that a total of 357 infants on reserve and in nearby Wabaseemoong Independent Nations had their cord blood sampled, and for decades this data sat in banker’s boxes in Thunder Bay and Ottawa.

When the samples were taken, residents whose mercury levels were considered too high received letters from Health Canada with advice. And while the mothers of the cord-blood babies should have been informed, the information wasn’t always passed on.

In 2017, the government began sending results to individuals who had signed consent forms, but there was a hitch: consent was difficult to obtain as those people may not have known, or even been told, if their cord blood had been taken at birth.

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This March, an official from Indigenous Services Canada wrote to Grassy Narrows Chief Rudy Turtle and council, saying the cord-blood records will be released, without consent forms, to Dr. Donna Mergler, a mercury expert at Université du Québec à Montréal who for several years has been working with community members to study the impact of the industrial mercury. Mergler may now give the data to the affected individuals if they want it.

The cord-blood data will be released as evidence of mercury’s toll on the community is mounting and leaders grow increasingly frustrated with the progress of a care facility that the federal government said it would build and operate.

Indigenous Services Minister Seamus O’Regan visited the reserve Wednesday to discuss, among other things, the treatment facility.

A Grassy Narrows press release said O’Regan left without an agreement to secure funding for the facility. “With the federal elections approaching, and the project only 1% funded, time is running out to deliver on this key promise which has become a litmus test for the Trudeau government’s sincerity on dealing justly with Indigenous peoples and the environment,” the release said.

In an emailed statement to the Star, O’Regan said he was disappointed an agreement was not signed but that building the facility is “our priority,” progress was made Wednesday and “Chief (Rudy) Turtle and I are committed to getting this done.”

During the 1960s, the Dryden pulp and paper mill, operated by Reed Paper, dumped 10 tonnes of mercury into the Wabigoon River that feeds Grassy Narrows downstream. The potent neurotoxin contaminated the fish and poisoned the people who ate it. They developed tremors, slurred speech, impaired hearing, tunnel vision and lost muscle co-ordination. The mercury, which was used to bleach paper, is still in the ground, river and fish.

The provincial government has committed $85 million to help clean the river. To date, the province has put the money in a dedicated trust and through it has funded pre-remediation studies of the river.

While the governments are paying more attention, community members are still sick and feel they are not getting the support they need.

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Recent research by Mergler revealed that children whose mothers ate fish at least once a week while pregnant are four times more likely to have a nervous system disorder or learning disability that is slowing their efforts in school. Those children were compared to Grassy Narrows children whose mothers hardly ever ate fish.

That research is part of an ongoing, comprehensive study that has also found the adults of Grassy Narrows report higher rates of suicidal thoughts and suicide attempts compared to other First Nations adults.

Those who are ill, Mergler has told the Star, “require adequate health care in Grassy Narrows, and that includes outpatient services, things like physiotherapy, vision care, cognitive stimulation.”

The federal government said in 2017 that it would help build a care home for those suffering from mercury poisoning. In a letter to the chief, then-Indigenous Services minister Jane Philpott committed to funding a feasibility study “as well as the construction and operation of the treatment centre ... once the design work and programming is ready.”

Turtle says the government is now telling him something different. He said that the $170,000 feasibility study has been completed, but officials have told him Ottawa won’t spend more until the provincial government commits to covering some of the medical care provided in the home. “They never mentioned the condition in the first place,” Turtle said.

The provincial government did not respond to questions. It is not known if Ontario and federal officials have spoken about care costs.

Ontario’s Progressive Conservative government has argued the federal Liberals were playing partisan political games to distract from inaction. A spokesman for Ontario Northern Development Minister Greg Rickford has said Philpott’s 2017 promise came absent any funding or operational commitment from the previous provincial Liberal government. “There’s absolutely nothing stopping the federal government from fulfilling their commitment to the community,” Brayden Akers said in a statement last month. “Any suggestion otherwise is blatantly false.”

The care home is estimated to cost $17 million to build and $70 million to operate for 30 years, according to a community source. The facility could include rooms for multiple residents, an exam room and customized showers and tubs — all essential and not currently offered by the community clinic. Such a facility could also be a home for palliative care, physiotherapy, counselling and traditional healing.

When Chrissy Isaacs was born in 1979, her blood showed a mercury concentration of 17.5 parts per billion (ppb) — more than double the level that Health Canada currently finds concerning and three times higher than the U.S. Environmental Protection Agency’s threshold, the Star reported in 2018 after Isaacs got her results through the more cumbersome consent process.

Research shows her level is high enough to have increased her risk of having had learning disabilities or motor skill deficits as a child, and a heart condition or accelerated aging as an adult.

“I know that I was exposed to dangerous levels of mercury before I was born,” said Isaacs, whose mother took her to a doctor as a toddler because she was clumsy. Her hands now tingle and she can’t open bottles. “But Canada has never offered me any support to deal with that. All around me I see my community suffer without the mercury treatment centre that was promised.”

As part of earlier research, when the anonymized cord-blood data was available, Mergler reviewed a 1996 Health Canada overview of the results. “At these cord-blood concentrations, there is consensus from the scientific literature that there would be effects on children’s neurodevelopment,” her report said.