Fed-up N.W.T. family heads south to get child's hearing impairment assessed

Three-year-old Evander Jerome finally has the hearing aid he needs after his parents gave up on waitlists and took him out of the Northwest Territories to get him medical help.

Now they're considering moving their family out of the territory because they lack confidence that the N.W.T. can provide his follow-up care.

'My ear don't work'

Evander was born in Whitehorse, and was diagnosed with hearing loss in his right ear. When he was six months old, the family returned to their home in Fort McPherson, N.W.T., and Evander was put on a Northwest Territories waitlist to see an audiologist.

As he got older, he struggled with his impairment.

"He started telling me 'Mommy, my ear don't work' and sometimes he would cry about it. He would get really frustrated, and he would say 'When it is going to start working?'" said Evander's mother, Jennifer Jerome.

Last April, when Evander was two years old and had been waiting a year and a half, Jennifer reached a breaking point.

"Our family was in Edmonton for an extended period of time, which is where I was told we would be sent for tests anyways," she said.

"So I called Edmonton to find out where Evander was on the waitlist, and they actually told me he wasn't on it."

Jennifer asked the N.W.T. Department of Health if Evander could be seen while the family was in Edmonton.

"They said 'no,' so I just decided to pay for the tests to be done privately and the audiologist in Edmonton recommended I get him to see an ear, nose and throat physician in the territory."

So Evander went on that waitlist. 

"I was calling our health centre all the time, and they would say, 'Oh they're coming in three months, you'll probably be seen then,'" said Jennifer.

In November, she called the hospital in Inuvik to try and get a more direct answer.

"That was when they finally said 'Well, actually there isn't an [ear, nose and throat doctor] for the Beaufort Delta right now, and there isn't going to be one for the foreseeable future.'

"At that point I went to Yukon for care."

Different territory, different results

Evander's visit to a Yukon doctor was covered by the N.W.T.'s health plan. Evander was then sent to Vancouver and because he has First Nations status, his family was able to have his medical travel covered by the federal non-insured health benefits program.

"We did a whole series of tests through the ear, nose and throat department in Vancouver, and found out we will be able to correct his hearing when he is 15," she said.

Until then, Evander will wear a hearing aid, which he was fitted for at his appointment in Vancouver and recently received.

"We've noticed a significant difference in his temperament at home," she said. "His speech has significantly improved, and certain sounds he couldn't make his whole life, he can make now."

She said he is happier, too.

"He gets so excited to wear it and he tells everyone in his little preschool that it gives him super powers because he can now hear in his ear."

While a large part of the battle is finally over, Evander requires constant follow up care — regular fittings for hearing aids as he grows and he needs his ears cleaned out regularly by an ear nose and throat doctor. Given their experience so far, the family worries he won't get that care in N.W.T.

"We are actually contemplating having to move out of the territory," Jennifer said.

She admits that's the challenge many people face when it comes to accessing health care in remote communities.

"I think it boils down to the fact that there is a need in small communities and not the resources to deal with it."

The definition of urgent

The N.W.T.'s Department of Health and Social Services would not comment on Evander's case specifically, but did say the length of his wait time is not typical – even for people living in a small community.

"Generally we have approximately 450 people waiting for an ENT physician," said David Keselman, director of Patient Care Services for Stanton Territorial Hospital.

People can wait anywhere from one month to one year for an ENT, depending on priority, but he said patients who are considered urgent cases are seen right away.

Strangely, the example Keselman used to define an urgent case fits Evander's circumstances to a T.

"Something that is urgent is, for example, a baby that's been born and has been assessed to have a hearing loss or a hearing deficit," said Keselman.

"They would not be waiting a year, because the sooner you assess and manage that condition, the better the outcomes will be."

Keselman wouldn't comment on how a child in Evander's situation could have waited so long, but he did say "I know that our structure is such that as referrals are received, they're triaged, they're assessed, and priority is assigned, and anything that is urgent is seen as soon as possible."

High need, low resources

Studies have found rates of hearing impairment in the Northwest Territories to be anywhere from two to 10 times as high as rates in southern provinces.

The N.W.T. is supposed to have two audiologists, two ear nose and throat physicians, and one hearing aid practitioner, but there has only been one permanent ear, nose and throat doctor for more than a year.

"Unfortunately with there not being enough ENTs in the territory right now, there are some communities not getting the service that they need to get," said Cheryl Messier, an audiologist in the Northwest Territories.

But Messier said even when fully staffed the territory could use "more of everything."

"If we want to be actively intervening in these children we need to be getting them tested and access to resources earlier."