18-month-old Francesca Jones plays at home with her father Will and mother Julia Tirabasso in early December.
Melissa Tait
When the wail of a fire alarm broke the night-time quiet of the hospital and her new baby did not stir, Julia Tirabasso knew something was wrong.
“I felt like it was the loudest sound I’d ever heard,” Ms. Tirabasso said, “And she slept through it.”
If her daughter, Francesca, had been born at another time or in a province other than Ontario, Ms. Tirabasso and her husband, William Jones, might never have found out exactly why their daughter could not hear the piercing alarm.
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Instead, within weeks of Francesca’s birth on May 25, 2018, Ms. Tirabasso and Mr. Jones learned that a common viral infection, passed from mother to baby in utero, had made their daughter deaf in both ears.
Francesca’s case was the first to be caught by the pilot phase of a new screening program in Ontario that, as of last July, expanded to become the first in the world to offer all parents the opportunity to have their newborns tested for congenital cytomegalovirus, or cCMV, the most common non-genetic cause of permanent hearing loss in children. The province has already caught 70 cases of congenital CMV infection, 53 of them since the program became universal.
The earlier that children with hearing loss are given hearing aids or cochlear implants, the likelier they are to learn to speak. For a cost of $600,000 a year, Ontario has built a program that should catch most children with cCMV-related hearing loss in time to dramatically improve their lives, raising questions about why other parts of Canada have yet to follow Ontario’s lead.
“People are looking very closely at what’s happening in Ontario,” said Sharon Cushing, an otolaryngologist at Toronto’s Hospital for Sick Children who helped craft Ontario’s cCMV screening program. “I travel all over the world, and they’re amazed at what we’re doing.”
For Francesca, early detection of her cCMV infection helped make it possible for her to become one of the youngest babies in the province to receive cochlear implants, electronic devices that partly restore hearing. She was nearly six months old when the implants were turned on for the first time, on Dec. 10, 2018.
Francesca Jones received cochlear implants when she was just five-months-old, one of the youngest in Ontario. At six months they were “turned on” and the video of baby Francesca reacting to her mother’s voice for the first time went viral. We visit the family one year on to see how Francesca is doing.
In a CBC news clip that has been viewed online nearly four million times, Francesca is quietly chewing on a rubber giraffe when a loud beep played by audiologist Susan Druker catches her attention. Francesca looks up and smiles.
Ms. Tirabasso leans in: “Ciao, Francesca.” Mr. Jones chimes in with, “Hi, Francesca.” The little girl rewards her parents with a wide grin. They both laugh with joy and relief.
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Getting to that moment was a journey that began not long after an outwardly healthy Francesca was born at Toronto’s Mount Sinai hospital.
Her case was caught during a pilot program that drew on two existing, but separate, screening programs for newborns: The Infant Hearing Program, which screens for hearing loss, and Newborn Screening Ontario, which co-ordinates the testing of heel-prick blood samples for more than 25 different diseases.
Until last year, Newborn Screening Ontario did not regularly test for congenital CMV.
Francesca is seen at an appointment with audiologist Susan Druker at Hospital for Sick Children in Toronto.
Melissa Tait
Most of the time, cytomegalovirus is no more dangerous than the common cold. But if a pregnant woman catches the virus through saliva or other bodily fluids and passes it on to her baby in utero, CMV infection can sometimes cause serious health problems. Symptoms range from the obvious – a small head, jaundice or a telltale rash – to the invisible, such as mild hearing loss that worsens over time.
If cCMV infection is identified quickly – ideally within the first four weeks of life – babies can be offered antivirals that work better the earlier they are started. Doctors can also monitor babies for hearing loss, which is especially important in cases where newborns with cCMV appear perfectly healthy.
“These children may, for a variety of reasons, pass their hearing screen at birth, but still be at risk,” said Jessica Dunn, medical lead for the CMV component of the new screening program and an infectious disease doctor at CHEO, a children’s health centre in Ottawa.
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Dr. Dunn said that, with the exception of Ontario’s new universal program, the Canadian health-care system has generally done a poor job of catching cCMV.
One University of Alberta study published in 2014 found that, between 2005 and 2008, Canadian pediatricians reported only 49 cases of congenital CMV, or 4.5 cases for every 100,000 births – a much lower birth prevalence than would be expected based on previous studies.
“The most likely explanation for the low reporting rate is missed diagnosis,” the study, published in the journal Paediatric Child Health, found.
Hoping to remedy that, Newborn Screening Ontario modified an existing blood test to detect cCMV in the dried blood spot, obtained from the heel prick, that NSO already collected from 99 per cent of the approximately 143,000 babies born in the province every year.
Once developed, the test cost about $2 a sample.
During the pilot phase, beginning in May, 2018, parents were offered the chance to opt-in to cCMV testing only after their children failed a full hearing screening test. Once the program became universal, last July, all parents were able to opt-in to testing for cCMV and three genetic risk factors for hearing loss, even if their children passed the initial hearing screen.
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Once Francesca tested positive for cCMV infection, Toronto’s Hospital for Sick Children immediately set up a day’s worth of appointments for the stunned couple and their one-month-old baby, whisking them from an infectious diseases doctor to an ear, nose and throat specialist and on to the audiology department.
“I was crying all day,” Ms. Tirabasso said. But she also found reason for hope. Dr. Cushing told Ms. Tirabasso and Mr. Jones that the health system had a “toolbox,” full of ways to help Francesca.
With guidance from 11 different types of doctors and health-care workers, including an auditory verbal therapist, an occupational therapist, a family support worker and an in-home teacher, Francesca, now 18 months old, can sing her alphabet, count, make animal sounds and mimic her parents as they read to her.
Ms. Tirabasso reads to her daughter.
Melissa Tait
“Do you want to read?” Ms. Tirabasso asked her daughter on a recent afternoon, holding up a board book titled Little Blue Truck.
“Read!” Francesca replied. As Little Blue Truck drove around his farm, Francesca repeated his signature sound, “Beep beep!” and quacked, neighed and mooed along with the animals. “All done!” Francesca said as she shut the book.
Softly, she called out for “Papa!” then switched to Mr. Jones’s lap. He read the opening of a Dr. Seuss book. “One fish, two fish, red fish, blue fish, black fish, blue fish, old fish …” Francesca interjected, “new fish.”
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“You’ve never said that before,” Mr. Jones said, clearly tickled.
To get Francesca to this point, where she comprehends words and speaks as well as any hearing toddler, has taken an all-encompassing effort by Ms. Tirabasso, a lawyer, and Mr. Jones, a product manager for a medical-device company.
They talk to Francesca constantly, narrating as they serve her tomatoes and cheese for dinner in their apartment north of downtown Toronto. Taped to the walls of the apartment are notes with tips from a language therapist: “6 sounds everyday e, a, ouu, mmm, siii, shh; use word ‘sandwiches’; Don’t feed her with full plate. Empty plate + ask her what she wants.”
When Francesca was younger, they hid around corners and rang bells, banged wooden spoons against pots and softly shook rice inside Tupperware containers, watching to see if Francesca could follow the source of the sounds.
If not for the small gadgets above Francesca’s ears, you might never guess that, when the external portion of the cochlear devices are removed for bath or bedtime, Francesca can’t hear at all.
Marlene Bagatto, an audiology professor and researcher at University of Western Ontario who chairs the Canadian Infant Hearing Task Force, said all Canadian children with hearing loss deserve the kind of early intervention that has helped Francesca to develop language. “The best chance you have for developing spoken language really well is up to age two. Earlier is better,” she says.
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The task force’s 2019 report card on Canadian early hearing detection and intervention programs rated only Alberta, British Columbia, Northwest Territories, Nova Scotia, Ontario and Yukon as having programs “sufficient” to identify hearing loss in babies and intervene to improve their odds of developing language. And only Ontario offers universal screening for cCMV. “It’s not okay for babies in this country,” Dr. Bagatto said.
Francesca Jones at The Hospital for Sick Children in Toronto after an appointment with the audiologist in early December.
Melissa Tait
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The Canadian government says it will donate up to 200,000 vaccine doses to fight the mpox outbreak in Congo and other African countries.
It says the donated doses of Imvamune will come from Canada’s existing supply and will not affect the country’s preparedness for mpox cases in this country.
Minister of Health Mark Holland says the donation “will help to protect those in the most affected regions of Africa and will help prevent further spread of the virus.”
Dr. Madhukar Pai, Canada research chair in epidemiology and global health, says although the donation is welcome, it is a very small portion of the estimated 10 million vaccine doses needed to control the outbreak.
Vaccine donations from wealthier countries have only recently started arriving in Africa, almost a month after the World Health Organization declared the mpox outbreak a public health emergency of international concern.
A few days after the declaration in August, Global Affairs Canada announced a contribution of $1 million for mpox surveillance, diagnostic tools, research and community awareness in Africa.
On Thursday, the Africa Centres for Disease Control and Prevention said mpox is still on the rise and that testing rates are “insufficient” across the continent.
Jason Kindrachuk, Canada research chair in emerging viruses at the University of Manitoba, said donating vaccines, in addition to supporting surveillance and diagnostic tests, is “massively important.”
But Kindrachuk, who has worked on the ground in Congo during the epidemic, also said that the international response to the mpox outbreak is “better late than never (but) better never late.”
“It would have been fantastic for us globally to not be in this position by having provided doses a much, much longer time prior than when we are,” he said, noting that the outbreak of clade I mpox in Congo started in early 2023.
Clade II mpox, endemic in regions of West Africa, came to the world’s attention even earlier — in 2022 — as that strain of virus spread to other countries, including Canada.
Two doses are recommended for mpox vaccination, so the donation may only benefit 100,000 people, Pai said.
Pai questioned whether Canada is contributing enough, as the federal government hasn’t said what percentage of its mpox vaccine stockpile it is donating.
“Small donations are simply not going to help end this crisis. We need to show greater solidarity and support,” he said in an email.
“That is the biggest lesson from the COVID-19 pandemic — our collective safety is tied with that of other nations.”
This report by The Canadian Press was first published Sept. 13, 2024.
Canadian Press health coverage receives support through a partnership with the Canadian Medical Association. CP is solely responsible for this content.
HALIFAX – The Nova Scotia government says it could be months before it reveals how many people are on the wait-list for a family doctor.
The head of the province’s health authority told reporters Wednesday that the government won’t release updated data until the 160,000 people who were on the wait-list in June are contacted to verify whether they still need primary care.
Karen Oldfield said Nova Scotia Health is working on validating the primary care wait-list data before posting new numbers, and that work may take a matter of months. The most recent public wait-list figures are from June 1, when 160,234 people, or about 16 per cent of the population, were on it.
“It’s going to take time to make 160,000 calls,” Oldfield said. “We are not talking weeks, we are talking months.”
The interim CEO and president of Nova Scotia Health said people on the list are being asked where they live, whether they still need a family doctor, and to give an update on their health.
A spokesperson with the province’s Health Department says the government and its health authority are “working hard” to turn the wait-list registry into a useful tool, adding that the data will be shared once it is validated.
Nova Scotia’s NDP are calling on Premier Tim Houston to immediately release statistics on how many people are looking for a family doctor. On Tuesday, the NDP introduced a bill that would require the health minister to make the number public every month.
“It is unacceptable for the list to be more than three months out of date,” NDP Leader Claudia Chender said Tuesday.
Chender said releasing this data regularly is vital so Nova Scotians can track the government’s progress on its main 2021 campaign promise: fixing health care.
The number of people in need of a family doctor has more than doubled between the 2021 summer election campaign and June 2024. Since September 2021 about 300 doctors have been added to the provincial health system, the Health Department said.
“We’ll know if Tim Houston is keeping his 2021 election promise to fix health care when Nova Scotians are attached to primary care,” Chender said.
This report by The Canadian Press was first published Sept. 11, 2024.
ST. JOHN’S, N.L. – Newfoundland and Labrador‘s chief medical officer is monitoring the rise of whooping cough infections across the province as cases of the highly contagious disease continue to grow across Canada.
Dr. Janice Fitzgerald says that so far this year, the province has recorded 230 confirmed cases of the vaccine-preventable respiratory tract infection, also known as pertussis.
Late last month, Quebec reported more than 11,000 cases during the same time period, while Ontario counted 470 cases, well above the five-year average of 98. In Quebec, the majority of patients are between the ages of 10 and 14.
Meanwhile, New Brunswick has declared a whooping cough outbreak across the province. A total of 141 cases were reported by last month, exceeding the five-year average of 34.
The disease can lead to severe complications among vulnerable populations including infants, who are at the highest risk of suffering from complications like pneumonia and seizures. Symptoms may start with a runny nose, mild fever and cough, then progress to severe coughing accompanied by a distinctive “whooping” sound during inhalation.
“The public, especially pregnant people and those in close contact with infants, are encouraged to be aware of symptoms related to pertussis and to ensure vaccinations are up to date,” Newfoundland and Labrador’s Health Department said in a statement.
Whooping cough can be treated with antibiotics, but vaccination is the most effective way to control the spread of the disease. As a result, the province has expanded immunization efforts this school year. While booster doses are already offered in Grade 9, the vaccine is now being offered to Grade 8 students as well.
Public health officials say whooping cough is a cyclical disease that increases every two to five or six years.
Meanwhile, New Brunswick’s acting chief medical officer of health expects the current case count to get worse before tapering off.
A rise in whooping cough cases has also been reported in the United States and elsewhere. The Pan American Health Organization issued an alert in July encouraging countries to ramp up their surveillance and vaccination coverage.
This report by The Canadian Press was first published Sept. 10, 2024.
