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home / 世界杯决赛2022

'why have i never heard about this?': raising awareness about a congenital infection that can cause hearing loss and development delays

the international cmv public health and policy conference is underway in ottawa early this week.

by elizabeth payne
published aug 22, 2022
read time 4 minute read
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read time 4 minute read
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keely and steve mcjannet with their three-year-old daughter hazel, who was born with cmv, which can cause hearing loss and development delays. errol mcgihon / postmedia
when cheo infectious disease physician dr. jason brophy meets with families of babies who were born infected with the potentially damaging virus cmv, the first question they ask is: “why have i never heard about this before?” although it is the most common congenital infection and the most common preventable cause of hearing loss and developmental delay in infants, congenital cmv (ccmv) is not widely known or understood by the general public.
specialists and researchers, like brophy, and families whose children have been affected want to see that change. the international cmv public health and policy conference is underway in ottawa early this week. in addition to the main conference, there will be an advocacy training meeting to help families advocate for more attention to the topic.
those parents include steve and keely mcjannet of stittsville.
in 2019, their second daughter, hazel, now a thriving three-year-old, was born with congenital cmv. she was among the first infants identified with the infection through an ontario program that tests all newborns for ccmv. she was also diagnosed with hearing loss.
ontario had previously done targeted testing on newborns with hearing abnormalities, but in 2019 it became the first jurisdiction in the world to test universally for ccmv through newborn screening, a blood test done shortly after birth. the testing is done through newborn screening ontario, based at cheo.
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for the mcjannets, the news was a shock.
“we knew nothing about it. we didn’t know about the potential of this virus and the harm for women that are pregnant.”
hazel was treated with antiviral medication and at eight months old received cochlear implants in both ears. she continues to receive speech therapy.
she is now a healthy, happy three-year-old with no other apparent effects from the virus, her dad says. among her favourite activities is dancing.
“it is amazing to see her pick up the sounds of music,” mcjannet said.
he credits early diagnosis, thorough screening and newborn hearing testing for her progress.
“we are lucky in ontario,” he said. “but all of canada is not quite as lucky. hazel benefitted from an early diagnosis and she was able to take some medicines to prevent further potential damage that the virus could have caused.”
dr. jason brophy is an infectious disease physician at cheo.
dr. jason brophy is an infectious disease physician at cheo. cheo / handout
saskatchewan followed ontario in introducing a universal screening program. manitoba has a targeted program aimed at testing newborns identified with hearing loss. and some urban centres across the country have targeted testing programs. but most provinces do not routinely test newborns for ccmv. outside of canada, some u.s. states are introducing universal testing.
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the conference is being held in ottawa, in part, so officials can share ontario’s experience with the testing.
“they want to hear what the experience has been in ontario because we were the first,” brophy said.
every year, hundreds of newborns are identified in ontario with congenital cmv. that is between 0.15 per cent and 0.18 per cent of babies born in the province. brophy said the dried blood test probably missed some infected infants. saliva or urine tests are considered the gold standard. brophy will conduct testing to compare the two forms of testing.
of those identified through blood screening, 85 to 90 per cent will have no symptoms, but they still have a 10- to 15-per-cent chance of developing hearing loss or developmental delays. children born with symptomatic ccmv have a higher risk of hearing loss, developmental delay, brain abnormalities and eye disease, he said.
the risk is ever present — cmv is a common infection that can do significant harm. if women get cmv for the first time when they are pregnant, they have a 30- to 40-per-cent chance of passing it to their baby, brophy said.
brophy says the vast majority of babies he sees through the program have an older sibling who is a toddler in daycare where viruses are common and spread easily.
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for those reasons, he said, people should be more aware of the risk and the benefits of early detection. it is not always possible to prevent infection, especially with a toddler in the house, but risk awareness might result in changed behaviours that limit the risk of infection, he said.
“this is the most common congenital infection,” he said, yet “every woman gets hiv testing during pregnancy, is counselled not to change cat littler (because of the risk of the toxoplasma parasite), knows she shouldn’t drink alcohol and is offered screening for down syndrome.”
none of those is as big a burden as congenital cmv, the most common congenital infection, which most pregnant women do not know about.
“we would like to see more people aware and talking about this so they can do things to reduce risk” as well as support efforts to lessen its impact.
elizabeth payne
elizabeth payne

elizabeth payne is an award winning health journalist whose stories became must-reads during the covid-19 pandemic and beyond.

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