CMV: congenital infection can lead to hearing loss and developmental delays

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The CMV International Policy and Public Health Conference is taking place in Ottawa earlier this week.

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When CHEO infectious disease physician Dr. Jason Brophy meets families of babies born infected with the potentially dangerous CMV virus, the first question they ask is, “Why have I never heard of it before? ? »

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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 the families whose children have been affected want to see this change. The CMV International Policy and Public Health Conference is taking place in Ottawa earlier this week. In addition to the main conference, there will be an advocacy training meeting to help families advocate for greater attention to the issue.

These parents include Steve and Keely McJannet of Stittsville.

In 2019, their second daughter, Hazel, now three, 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.

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Ontario had previously conducted targeted testing of newborns with hearing abnormalities, but in 2019 it became the first jurisdiction in the world to universally test for cCMV through newborn screening, a blood test performed soon after. the birth. Testing is done through Newborn Screening Ontario, based at CHEO.

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For the McJannets, the news came as a shock.

“We didn’t know. We did not know the potential of this virus and the harm to pregnant women. »

Hazel was treated with antiviral drugs and at eight months received cochlear implants in both ears. She continues to receive speech therapy.

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She is now a healthy and happy three-year-old with no other apparent effects from the virus, her father says. One of her favorite activities is dancing.

“It’s amazing to watch her pick up the sounds of the music,” McJannet said.

He credits early diagnosis, thorough screening and hearing testing of newborns to his progress.

“We’re lucky in Ontario,” he said. “But not all of Canada is so lucky. Hazel benefited from an early diagnosis and she was able to take medication to prevent further potential damage 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 Photo /Handout

Saskatchewan followed Ontario in introducing a universal screening program. Manitoba has a targeted program to test newborns identified as having hearing loss. And some urban centers across the country have targeted testing programs. But most provinces do not routinely test newborns for cCMV. Outside of Canada, some US 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 testing.

“They want to know what the experience was in Ontario because we were the first,” Brophy said.

Each year, hundreds of newborns in Ontario are identified with congenital CMV. This represents between 0.15% and 0.18% of babies born in the province. Brophy said the dried blood test likely missed some infected infants. Saliva or urine tests are considered the gold standard. Brophy will run tests to compare the two forms of testing.

Of those identified by blood screening, 85-90% will have no symptoms, but they still have a 10-15% 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.

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The risk is always there – CMV is a common infection that can cause significant damage. If women first contract CMV when they’re pregnant, they have a 30 to 40 percent chance of passing it on to their baby, Brophy said.

Brophy says the vast majority of babies he sees in the program have an older sibling who is a toddler in a daycare center where viruses are common and spread easily.

For these reasons, he said, people should be more aware of the risks and benefits of early detection. It’s not always possible to prevent infection, especially with a toddler at home, but raising awareness of the risks can lead to changing behaviors that limit the risk of infection, he said.

“It’s the most common congenital infection,” he said, but “every woman gets tested during pregnancy, advised not to change to a smaller cat (due to risk of parasite Toxoplasma), knows she shouldn’t drink alcohol and is offered screening for Down syndrome.

None of these are as heavy a burden as congenital CMV, the most common congenital infection, which most pregnant women ignore.

“We would like to see more people aware and talking about it so they can do things to reduce the risk” as well as support efforts to mitigate its impact.

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