Only half of Quebec newborns are entitled to a hearing test at birth. The Legault government had nevertheless committed, a little over a year ago, to ensuring that all infants have access to it by the end of 2021. The Ordre des orthophonistes et audiologistes du Québec denounces a “lack of leadership” and wants to put this question back on the table during the election campaign.
The Quebec Newborn Hearing Screening Program (PQDSN) was launched ten years ago. It has only been deployed in 17 hospitals and 3 birthing centers — out of the 86 facilities where births take place. According to the Ministry of Health and Social Services (MSSS), approximately 53% of Quebec babies were able to benefit from the PQDSN in 2021-2022.
The Order of Speech-Language Pathologists and Audiologists of Quebec is indignant that 47% of newborns are left behind. “We launched a program [PQDSN] ten years ago and this is an acknowledgment of failure, says its president Paul-André Gallant. We are really behind compared to the other provinces of Canada and it is incomprehensible that we are at this level currently. »
The elected members of the National Assembly unanimously adopted, on May 11, 2021, a motion asking the government to set up the PQDSN “in all places of birth” in the province “by the end of the year 2021”. Since then, the proportion of newborns receiving a screening test has increased from 42% to 53%.
An unacceptable and unfair situation, according to the Quebec Association for Children with Hearing Problems (AQEPA). “The goal of the PQDSN is for a child who is deaf to be directed to rehabilitation at [l’âge de] six months at the latest, because we are in an essential phase of language development, explains Claire Moussel, general manager of AQEPA. At 18 months, it’s already too late. »
Four to six out of every thousand babies are born each year with hearing loss. Anna-Êve Tremblay-Harvey is one of them. His parents discovered his profound deafness when he was nine months old.
Anna-Êve did not undergo a hearing test when she was born at the Chicoutimi Hospital in December 2019. The girl, now two years and eight months old, has a cochlear implant. She is unable to speak.
” It’s sure that [si elle avait subi le test], it could have had an impact on his development, says his mother, Alexandra Harvey. Would that have changed the fact that today, she doesn’t speak? Maybe. I can not tell you. But we would have liked to know that from the start. It would have made a lot of things easier for me. »
Alexandra Harvey had “a big depression” following the diagnosis of her daughter. She is still taking medication. “It was a shovel in the face, I apologize for the expression,” she said.
Her eldest son has Autism Spectrum Disorder (ASD). Anna-Eve must also be evaluated for this problem. It’s unclear whether his communication and socialization difficulties are related to his complete deafness or a possible ASD — or both. “We are on the waiting list for a TSA investigation,” said Alexandra Harvey. It’s still quite tight. For my son, there was suspicion at 18 months and we have just had the result. He is four years old. »
Deployment hampered by the pandemic
At the Ministry of Health, it is indicated that “the pandemic has limited the possibility of deploying the program [PQDSN] in other facilities. The MSSS underlines the “efforts” made to “maintain screening”, despite the health crisis, “and this, in all establishments that already offered the screening program”.
“Several establishments have taken steps to offer the PQDSN to newborns in their region by the end of this year,” we wrote in an email. The MSSS specifies that the government’s “objective” is to make the PQDSN “universal by the end of 2023”.
Quebec recalls that newborns with risk factors are immediately directed to an audiology service where screening tests for deafness are carried out. “As part of the activities of the Agir jeune program, children could also be identified if they presented a delay related to a deafness problem,” adds the MSSS.
Paul-André Gallant finds that the pandemic has a broad back. “Anyway, we’ve been given all sorts of reasons for ten years and it’s not progressing any more,” he says. According to him, the screening test is simple and requires little time. A nursing assistant or other trained professional can do this.
He believes that a “national leader” must be appointed to take charge of this file. This could guide the CIUSSSs and CISSSs and share the successes of hospitals that have already implemented universal screening for neonatal deafness. According to him, each health facility should appoint a person to closely monitor the deployment.
“There is a misunderstanding of the PQDSN in several CISSSs, maintains Paul-André Gallant. We spend a lot of time educating, both at the ministry and in the CIUSSSs, about what the program is. »
The president of the Ordre des orthophonistes et audiologistes du Québec thinks that the various issues related to hearing will have to be discussed during the election campaign. “The hearing health of Quebecers is deteriorating and the aging of the population means that millions of people are affected,” he says. This interferes with autonomy and learning. »