From Nunavut to Ottawa: thousands of kilometers to care for your child

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From Nunavut to Ottawa: thousands of kilometers to care for your child

At 14, Tijay Kuniliusie spent a lot of time away from her native Nunavut for treatment in Ottawa. His mother, Tina, accompanies him wherever he goes.

Every year, hundreds of Nunavut children and their families make the long journey to Ottawa to receive medical care they cannot get at home. They are welcomed at CHEO, the Children's Hospital of Eastern Ontario. These trips, which sometimes last several months, cut them off from their bearings and sometimes push them to make heartbreaking choices.

Sitting on a bench in an Ottawa park, Tina Kuniliusie sings to her daughter, Tijay, in Inuktitut, their native language. Her forehead pressed against her daughter's, she reassures her.

Tijay is 14 years old. She lives in Clyde River, Nunavut, but has spent a lot of time in Ottawa since birth due to multiple health issues. She has needed a feeding tube since she was a baby and cannot talk or walk.

Tijay Kuniliusie, left, is accompanied to Ottawa by her mother, father and her brother several times a year.

For more than a decade, her family has lived to the rhythm of moving to Ottawa, sometimes several times a year. Arriving in the federal capital is like an obstacle course: it takes two flights and 12 hours on average to travel the 2800 kilometers to the federal capital and its children's hospital.

It's painful, because we have to leave our community and go to a totally different culture to access medical services that are not available in Nunavut, explains Tina Kuniliusie.

There is a hospital two hours by plane from her home, the Qikiqtani General Hospital, in Iqaluit, but many medical specialties are not offered there, forcing many families to make the long journey with a sick child.

Qikiqtani General Hospital, Iqaluit.

CHEO, the children's hospital in Ottawa, has been designated to care for them.

In 2019, it welcomed 544 young patients from Nunavut, a number that has grown steadily over the years except during the pandemic. For the year 2022, 456 children have been seen as of November 29.

In response to growing demand, CHEO opened the Aakuluk Clinic in 2019 to provide care and culturally appropriate supports for children from Nunavut and their families as well as translation services.

Top reasons for visiting CHEO for children from Nunavut (2017-2021 ):

  1. Acute respiratory tract infection
  2. Viral infection
  3. Epilepsy
  4. Pneumonia
  5. Acute bronchiolitis

Source: CHEO

You have to imagine the difficulties these families experience upon arriving in Ottawa: sometimes they don't understand the language and have a different culture, explained to us Dr. Radha Jetty, pediatrician at CHEO and medical lead of the clinic, in an interview granted earlier this year.

“It's kind of like we who live in Ottawa have to travel to Mexico to have access to pediatric services.

—Dr. Radha Jetty, CHEO Pediatrician and Clinic Medical Lead

Dr. Radha Jetty is a Pediatrician at CHEO and Medical Lead of the Aakuluk Clinic at Children's Hospital .

Travel and living expenses in Ottawa are supported by the Government of Nunavut and the federal government, including through the Inuit Children of Ottawa initiative. first, set up by Ottawa.

But that doesn't cover everything, especially when the length of the stay is not the one initially planned.

This fall, the trip was supposed to last four days, but the Kuniliusie family is finally stayed longer than four weeks.

Every time we go down to Ottawa, we are told it's for four or five medical appointments, but when we arrive, we are told adds […] But at home, the bills are piling up, the work has to be done, says Tina Kuniliusie.

Another consequence is that other children or family members often have to be left in Nunavut. For several years, Tina was separated from her son, Peter, whenever she traveled to Ottawa for her daughter's medical appointments.

For several years, Peter had to stay in Nunavut while his parents and sister traveled to Ottawa. The 12-year-old boy is now part of the trip, but Tina Kuniliusie says the process is difficult.

I fought so that he could accompany us, it was very difficult, she explains.

And each time you stay in Ottawa, you have to justify the boy's arrival again.

“I continue to fight today so that he can come. For the trip this fall, I started filling out all the paperwork this summer. These are complicated documents, you have to follow certain steps.

—Tina Kuniliusie

Faced with these obstacles, many families in Nunavut are reluctant to undertake this great trip, notes Stéphanie Mikki Adams, director of the Inuuqatigiit center for Inuit children and families, which offers cultural and logistical support to these travelers once they arrive in Ottawa.

They have a million questions. They are afraid and wonder: who will take care of my children? Who will accompany my sick child? Will I be able to do without an income? she says.

An outdoor playground in Grise Fiord

Ms. Mikki Adams adds that for some, going from a community of a few hundred people to a big city like Ottawa can be a shock .

Some families in Nunavut may face the difficult decision of placing their child in foster care for young sick people in Ottawa.

Dr. Jetty explains that this can happen when children have complex medical conditions.

“It is difficult for them to return to their communities in Nunavut, especially those that are a long distance from services they need, so they have to stay in Ottawa.

— Dr. Radha Jetty, CHEO Pediatrician and Clinic Medical Lead

Adds: This is not a situation one wants to have, but sometimes we have no choice.

According to figures provided by the Government of Nunavut, 68 children were placed in foster care for medical reasons outside the territory in 2020-2021.

James Sangoya is Tijay's father. He too is part of the journey.

Tijay's father, James, says the family thought about placing his daughter in foster care in Ottawa, but ultimately decided not to.

Tina Kuniliusie, she finds it difficult to see our young Inuit go south, and for some not to return, as we have seen in the past with displacements linked to tuberculosis or boarding schools.

Dr. Jetty, who has also worked in Nunavut, explains that when children are away from home for a long time, they can lose this attachment to their family, language and culture.

We must be aware that the systems that exist have been developed in a way that unfortunately results in discrimination for Aboriginal children. We are at risk of repeating the mistakes of the systems that were in place during residential schools in the past.

For its part, the Ottawa Health Services Network Inc., an organization who coordinates medical visits in the capital and who accompanies patients, specifies in an email that the number of cases where medical placement is required has decreased to become a real rarity in recent years.

In her office in Iqaluit, Dr. Amber Miners is well aware of all these challenges.

Dr. Amber Miners is a pediatrician in Iqaluit, including at the Qikiqtani General Hospital.

We always try to keep care close to home as much as possible and build capacity locally, says Dr. Miners.

The pandemic has also made it possible to find other ways to bring patients closer to caregivers.

We have had more videoconferences with specialists based in Ottawa, which saved us a lot of travel,” she says.

“My hope for the future is that we can build capacity on the land and I would like to see more Inuit practitioners. We will always need our partners in the south… but having more doctors locally would be wonderful.

— Dr. Amber Miners, pediatrician in Iqaluit

Tina Kuniliusie shares this hope for more accessible services in her community. But his family has yet to see any improvement.

There are so many resources here [in Ottawa] that Tijay would be entitled to that don't exist in Nunavut. She was authorized to have respite care, to allow us to rest and take time for ourselves. But we can't find anyone to hire for this service in my community, even though the funding has been approved, adds the mother of the family.

Without a short-term solution, the Kuniliusie family is once again faced with a difficult choice.

Exhausted from commuting between Clyde River and Ottawa, she ponders the possibility of settling down for good in the federal capital, thousands of miles from her bearings.

Tina Kuniliusie, originally from Clyde River, Nunavut, is seriously considering moving to Ottawa for better access to health care.

Ten years of fighting a system is a long time. I can't go on for ten more years, it's too much for one person. So whether I like it or not, it looks like we're heading towards a move to Ottawa, says Tina Kuniliusie.

When asked what she dreams of, she doesn't don't hesitate long: More resources, more support and hospitals in Nunavut.

With information from Estelle Côté-Sroka, Matthew Kupfer and Matisse Harvey

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