Miss-Delectable
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Alberta newborns deserve a hearing test
Isaac was born into a world of music.
His mother's been a band geek since high school. His father's a recreational jazz musician, not to mention the Edmonton Symphony Orchestra's personnel manager.
When Isaac was still an infant, Eric Filpula would play the trumpet for him. But Isaac was indifferent to the tunes. His parents found that odd, even though their pediatrician told them some babies don't react to loud noises in the early months.
"We weren't sure if he just didn't like jazz," mom Deborah Robb recalls.
The Edmonton couple can joke about it now. It was less funny when they first found out their small son with Down syndrome has no auditory nerve. Isaac is completely deaf. Hearing aids and cochlear implants are futile.
If Alberta, like most other Canadian provinces, had the Universal Newborn Hearing Screening test, Robb and Filpula would have known as soon as they became parents in late 2008 that Isaac could not hear.
Instead, it took four months for them to notice something was amiss and a further nine months of medical testing to confirm Isaac's deafness.
"He was 15 months before we had a definitive diagnosis," Robb says.
The baby actually wore hearing aids at his first Folk Fest in 2009, because doctors had yet to determine that no device would ever help him hear.
Fifteen months, wasted. More than a year the couple could have devoted to learning American Sign Language, the dominant language used in the deaf community, to communicate with their child. "If we'd have known earlier, we would have launched into learning our second language sooner. That's lost time."
The UNHS is a non-invasive test administered for newborns in every province except four: Alberta, Saskatchewan, Manitoba and Newfoundland and Labrador. It's inexpensive, too; about $35 per baby. And worthwhile; three babies per 1,000 live births have hearing loss, according to the Alberta College of Speech-Language Pathologists and Audiologists, a higher prevalence than any other condition newborns are screened for at birth. And half of babies with a hearing problem have no known risk factors.
"It's time for us to join the other provinces," says Anne Assaly, chief executive of the college. "With earlier intervention, these little kiddies' communication skills aren't going to be impaired or delayed in any way," Assaly says.
Surely, the place a baby is born in Canada should not dictate what sort of services they receive. Surely, parents like Robb and Filpula shouldn't be sent home assuming their child can hear perfectly well only to find out months, years later, he can't.
Many children with a hearing impairment are three, four, even school-aged before someone clues in. By then, the critical phase of a child's speech and language development has passed. The long-term costs - to a child's communication skills, and to taxpayers in the form of therapies to (hopefully) help the child catch up - can end up being much higher.
Earlier this year, the Canadian Paediatric Society put out a paper endorsing the UNHS test, a recommendation that has not been enacted in this province.
Howard May, a spokesperson for Alberta Health and Wellness, says the ministry has done a "detailed analysis" on the issue, and the results indicate the province should not implement the UNHS as a standalone program, but as part of a more integrated approach to general health screening for infants and preschoolers. According to May, "We haven't decided on anything yet. We can't say we're committed to funding anything."
Meanwhile, children with undetected hearing impairments are trying to figure out what Mommy or Daddy is saying.
Alberta's ongoing failure to do the right thing - to test each newborn, to give each child the best possible chance at communicating, right from the start - is the reason Kelly Hicks wrote a letter this month to Health and Wellness Minister Gene Zwozdesky, urging him to implement the UNHS program here.
Hicks's son, Angus, was born in Calgary in 2009 and wasn't diagnosed with moderate hearing loss until he was nearly two years old. "It's not right that, in Alberta, infants don't get the same standard of care as in other provinces," Hicks says. "I'm really angry he wasn't given this test at birth."
Hicks noticed Angus wasn't responding to his name at six months. But he did respond to a loud clap. She didn't want to be a paranoid parent and dismissed it. A year later, she noticed he had trouble distinguishing between the word "Daddy" and the name of their rescue dog, Abby.
"You'd say, 'Where's Daddy?' and he'd point to the dog," she says. "The light hadn't come on, 'Yeah, he can hear, but WHAT can he hear?' " By the time Hicks knew there was a problem, the family was living in Nova Scotia, which does have the UNHS program. People would ask Hicks if Angus had passed his hearing test. She didn't know what they were talking about.
"It was quite shocking that, of all the provinces not to have it, Alberta was one of the ones," she says.
Hicks doesn't want other families in Alberta to face the same frustrations. She wants to see every Alberta baby's hearing tested, just the same as every baby in Nova Scotia. And she wants increased awareness about the issue. "I trusted the health-care system in Alberta, that they'd do what needs to be done. If I had known that newborn hearing screening is done in seven other provinces and not Alberta, I'd have asked for that test at six months when he wasn't responding to his name."
Here in Edmonton, Isaac is nearly three years old and happily communicating through ASL. His mom has lost track of how many signs her son knows. One hundred? Two hundred? "We're just barely ahead of him."
Isaac was born into a world of music.
His mother's been a band geek since high school. His father's a recreational jazz musician, not to mention the Edmonton Symphony Orchestra's personnel manager.
When Isaac was still an infant, Eric Filpula would play the trumpet for him. But Isaac was indifferent to the tunes. His parents found that odd, even though their pediatrician told them some babies don't react to loud noises in the early months.
"We weren't sure if he just didn't like jazz," mom Deborah Robb recalls.
The Edmonton couple can joke about it now. It was less funny when they first found out their small son with Down syndrome has no auditory nerve. Isaac is completely deaf. Hearing aids and cochlear implants are futile.
If Alberta, like most other Canadian provinces, had the Universal Newborn Hearing Screening test, Robb and Filpula would have known as soon as they became parents in late 2008 that Isaac could not hear.
Instead, it took four months for them to notice something was amiss and a further nine months of medical testing to confirm Isaac's deafness.
"He was 15 months before we had a definitive diagnosis," Robb says.
The baby actually wore hearing aids at his first Folk Fest in 2009, because doctors had yet to determine that no device would ever help him hear.
Fifteen months, wasted. More than a year the couple could have devoted to learning American Sign Language, the dominant language used in the deaf community, to communicate with their child. "If we'd have known earlier, we would have launched into learning our second language sooner. That's lost time."
The UNHS is a non-invasive test administered for newborns in every province except four: Alberta, Saskatchewan, Manitoba and Newfoundland and Labrador. It's inexpensive, too; about $35 per baby. And worthwhile; three babies per 1,000 live births have hearing loss, according to the Alberta College of Speech-Language Pathologists and Audiologists, a higher prevalence than any other condition newborns are screened for at birth. And half of babies with a hearing problem have no known risk factors.
"It's time for us to join the other provinces," says Anne Assaly, chief executive of the college. "With earlier intervention, these little kiddies' communication skills aren't going to be impaired or delayed in any way," Assaly says.
Surely, the place a baby is born in Canada should not dictate what sort of services they receive. Surely, parents like Robb and Filpula shouldn't be sent home assuming their child can hear perfectly well only to find out months, years later, he can't.
Many children with a hearing impairment are three, four, even school-aged before someone clues in. By then, the critical phase of a child's speech and language development has passed. The long-term costs - to a child's communication skills, and to taxpayers in the form of therapies to (hopefully) help the child catch up - can end up being much higher.
Earlier this year, the Canadian Paediatric Society put out a paper endorsing the UNHS test, a recommendation that has not been enacted in this province.
Howard May, a spokesperson for Alberta Health and Wellness, says the ministry has done a "detailed analysis" on the issue, and the results indicate the province should not implement the UNHS as a standalone program, but as part of a more integrated approach to general health screening for infants and preschoolers. According to May, "We haven't decided on anything yet. We can't say we're committed to funding anything."
Meanwhile, children with undetected hearing impairments are trying to figure out what Mommy or Daddy is saying.
Alberta's ongoing failure to do the right thing - to test each newborn, to give each child the best possible chance at communicating, right from the start - is the reason Kelly Hicks wrote a letter this month to Health and Wellness Minister Gene Zwozdesky, urging him to implement the UNHS program here.
Hicks's son, Angus, was born in Calgary in 2009 and wasn't diagnosed with moderate hearing loss until he was nearly two years old. "It's not right that, in Alberta, infants don't get the same standard of care as in other provinces," Hicks says. "I'm really angry he wasn't given this test at birth."
Hicks noticed Angus wasn't responding to his name at six months. But he did respond to a loud clap. She didn't want to be a paranoid parent and dismissed it. A year later, she noticed he had trouble distinguishing between the word "Daddy" and the name of their rescue dog, Abby.
"You'd say, 'Where's Daddy?' and he'd point to the dog," she says. "The light hadn't come on, 'Yeah, he can hear, but WHAT can he hear?' " By the time Hicks knew there was a problem, the family was living in Nova Scotia, which does have the UNHS program. People would ask Hicks if Angus had passed his hearing test. She didn't know what they were talking about.
"It was quite shocking that, of all the provinces not to have it, Alberta was one of the ones," she says.
Hicks doesn't want other families in Alberta to face the same frustrations. She wants to see every Alberta baby's hearing tested, just the same as every baby in Nova Scotia. And she wants increased awareness about the issue. "I trusted the health-care system in Alberta, that they'd do what needs to be done. If I had known that newborn hearing screening is done in seven other provinces and not Alberta, I'd have asked for that test at six months when he wasn't responding to his name."
Here in Edmonton, Isaac is nearly three years old and happily communicating through ASL. His mom has lost track of how many signs her son knows. One hundred? Two hundred? "We're just barely ahead of him."