Father pushing Manitoba to follow Ontario, Saskatchewan in screening for CMV

Roughly one in 200 babies born in Canada today will have a virus that can lead to hearing loss, intellectual disability or vision loss.

Congenital cytomegalovirus (CMV) is “in the family of the herpes group of viruses,” Dr. Ari Bitnun, pediatric infectious disease specialist at Toronto’s Hospital for Sick Children, told CTV National News.

“There’s a whole bunch of them, so it’s related to the virus that causes mono and cold sores. It is very common.”

However, it’s only Saskatchewan and Ontario that are screening newborns for CMV.

The gap in screening has led Rob Tétrault, co-founder of CMV Canada and the father of a boy born with CMV, to push for testing in all provinces.

“We have sick kids and we are choosing not to identify them. We are choosing not to treat them,” he says.

The father from Winnipeg is hoping to increase awareness by running across the province on a 12-day marathon from the Saskatchewan border to the Ontario border, bridging the “screening gap,” he says.

He’s asking people to sign up, donate and run with him to bring awareness. Run with Rob for CMV Canada is set to kick-off May 12.

“It’s the number one cause of infant disability, the number one cause of non-genetic hearing loss. It’s way more common than people are aware of and nobody has ever heard about it.”

In Manitoba, where targeted screening is done on some infants, the provincial government says it is looking at the impact of universal screening for all newborns in other provinces.

A government spokesperson said in a statement, “Manitoba Public Health is committed to a targeted congenital cytomegalovirus (cCMV) screening process and is following the impact of universal cCMV screening programs in other jurisdictions.”

PARENTS ‘SURPRISED’ AFTER HEARING ABOUT CMV: EXPERT

CMV is passed via bodily fluids like saliva, urine, blood, tears, semen, and breast milk.

“If you catch CMV infection during pregnancy and it’s transmitted to the fetus, it can have significant consequences for the fetus,” Bitnun says.

Bitnun says mothers with toddlers in daycares may be more susceptible to CMV. His advice is to wash your hands regularly, especially after diaper changes, and to not share food or utensils with a toddler.

Antivirals can be used to treat infection, and while vaccine trials are being done, the work is ongoing.

“Most mothers that come to me with a baby that has congenital CMV are surprised that they’ve never heard of CMV,” Bitnun says. “And I think we’ve done a terrible job of advocacy in that sense, as there are simple interventions that will reduce a woman’s risk of acquiring CMV in pregnancy.”

As part of screenings, newborns are given a heel-prick test, allowing doctors to collect a small amount of blood. It is checked for genetic, metabolic, blood or hormone-related conditions which may not be apparent at birth, but could cause serious health problems.

CURRENT STATE OF CMV SCREENING IN CANADA

Ontario included CMV in its newborn screening program in 2019 and in 2022, Saskatchewan became the second province to do so.

Francesca Jones was the first baby diagnosed under a CMV pilot screening program in in 2018. She was born deaf and received cochlear implants at six months old. She is now four-and-a-half years old, healthy and happy.

Her early diagnosis allowed doctors to help her quickly get treatment for hearing loss, which her father, William Jones, says he is thankful for.

“You’re catching kids early who may have severe disabilities,” Jones says. “If doctors can intervene with certain therapies, it can have a huge effect on that person’s life for the long term. I think it’s just a no-brainer.”