Nunavut does not have any programs in place to identify infants with hearing loss, according to a new report released by the Canadian Infant Hearing Task Force.
Bernice Clarke says she was lucky to give birth in Ottawa, where her son Simon Kootoo-Reist was tested for hearing loss as a baby and found to be deaf.
"Everything had to be taken care of in Ottawa for testing, for support, for anything," said Clarke.
"There was nothing here in Iqaluit, absolutely zero."
Chantal Kealey, director of audiology and communication health assistants at Speech-Language and Audiology Canada, said ideally the screening would be done before one month of age.
"What we're looking for in these programs is that essentially every baby born needs to have a hearing screening," she said.
"Any baby who's not passing that screening needs to be referred on for more in-depth or diagnostic testing."
If a hearing loss diagnosis is confirmed, then the infant needs to be referred to early intervention services to assist with language and communication development, said Kealey.
She said studies show that early detection and access to programs by six months of age can result in children with hearing loss having normal language levels by the time they go to school as compared to their normally hearing peers.
Children who receive services after six months of age will have delayed language development, which will affect their academic progress and social development, added Kealey.
"There really needs to be some commitment in terms of funding and staffing to be able to implement a program to make sure that the babies are not being missed," said Kealey.
She added that the small remote communities in the territory make it a challenge to provide services in Nunavut.
Lack of qualified staff is a main problem. Nunavut went without a permanent audiologist for 10 years. In the past three years the territory has gained one permanent audiologist.
"A lack of permanent staff for so many years really put Nunavut behind the eight-ball when it comes to implementing a program like this," said Kealey.
With appropriate funding, one possible solution could be for Nunavut to explore the possibility of sharing services with another province or territory.
Back and forth to Ottawa
"We need more support from the government, more support from everybody," said Justin Clarke, Simon's father.
"It's unfortunate kids are going without and the parents are asking questions but who do they ask?"
While the Clarkes say they were lucky their son was born in Ottawa and had his hearing screened, they say they are frustrated with the lack of services available to him in the territory.
Since he was born, Simon has had to travel back and forth between Iqaluit and Ottawa every six weeks to test his cochlear implants and get expert care.
Now 15, tears run down his face as he talks about missing the equivalent of more than two years of classes because of his frequent trips to Ottawa.
"Missing out on school was pretty hard," he said.
"It's better if they had more things here instead of somewhere else."
He also said his teachers have received no training on how to help him in school and his classes are not equipped with technology to help him hear lectures. As a result he's worried about his level of education and if he will be prepared for university when he graduates from high school.
Canadian audiologists are calling on Health Minister Jane Philpott and her provincial and territorial counterparts to address the need for improved early hearing detection and intervention programs.