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Battling cCMV, a life-changing virus like no other

INNISFAIL – Education and awareness can go a long way in stopping the spread of a virus.
Brittany Lundy feeds her infant daughter June Johansen, who was born with cCMV.
Brittany Lundy feeds her infant daughter June Johansen, who was born with cCMV.

INNISFAIL – Education and awareness can go a long way in stopping the spread of a virus.

Several Central Alberta families, including those in Innisfail, Red Deer and Spruce View, have come together to help raise awareness, advocate and educate others about congenital cytomegalovirus (cCMV).

Cytomegalovirus (CMV) is a member of the herpes virus family and is a common occurrence. It is usually harmless to the general population.

A CMV infection causes cold-like symptoms, such as a sore throat, fever, fatigue and swollen glands. These mild symptoms last for a short time and are rarely cause for concern for healthy children and adults.

However, the CMV virus can cause serious problems for people with weakened immune systems and morph into severe disease in babies who are infected with CMV before birth.

It is known as congenital CMV (cCMV).

The first provincial chapter of CMV Canada will be established here in Alberta this year, by a group of local parents. The Alberta Chapter of CMV Canada is the official name of the group.

Innisfail’s Lisa Robinson is a founding member of the Alberta chapter and has a child with cCMV. She said few people know about CMV and cCMV and its impact.

“Less than 10 per cent of the general population has ever heard of CMV and a huge number of those babies (born with cCMV) go home completely undiagnosed,” said Robinson. “Most people are very shocked to hear about the prevalence of cCMV because they’ve never been informed about it by doctors or public health.”

Congenital CMV occurs as often as one in 150 to one in 200 newborns in Canada, with similar prevalence around the world, noted Robinson.

It usually causes mild or no symptoms at all in pregnant women, but can transfer to developing babies and lead to a spectrum of serious consequences, including hearing loss or deafness, low birth weight, and permanent brain damage, she added.

Some children are born with obvious symptoms of CMV while others are infected but are asymptomatic.

“It usually means that the mom had an active infection during the pregnancy. That happened to all of us,” said Robinson, noting several parents from Central Alberta that have had children diagnosed with cCMV.

Brittany Lundy from Spruce View is one of them.

“I didn’t know I had it but I was sick all winter long. I thought it was just a cold but CMV can show up as cold-like symptoms,” said Lundy, noting her infant daughter June was born with hearing loss.

Robinson said the group will advocate for cCMV screening (tests) for babies born in Alberta and make it a priority, in addition to raising awareness among expectant mothers.

"Pregnant moms can help prevent (the spread of) CMV when they’re expecting, such as being careful about saliva from toddlers. This is the most common way that CMV is transmitted," said Robinson. "Saliva from other young children in the home or workplace is important to point out when informing women about how to protect their babies during pregnancy."

Robinson said she was asymptomatic during her pregnancy, although her daughter was deeply affected by the virus.

“Hearing loss is commonly associated with CMV,” said Robinson. “Congenital CMV is the leading cause of non-genetic hearing loss.”

Robinson’s daughter Georgia was born in 2012 with cCMV.

She has since been diagnosed with cerebral palsy, severe hearing loss, a brain condition called polymicrogyria (PMG), which describes a smaller, underdeveloped brain and high risk for seizures, developmental delays and learning challenges, including attention deficit hyperactivity disorder (ADHD).

“The medical community understands how significant this is, how expensive it is and how many people are impacted,” she said. “They’re just not telling us.”

One province is stepping up to help inform and educate parents.

In 2019, Ontario will begin universal screening for cCMV at birth, said Robinson.

“It will be one of the first places in the world to have universal CMV screening. They’re calling it a hearing screening because they’re going to find those babies at risk for hearing loss by looking for CMV,” explained Robinson.

“I think what strikes me is that we know that we’re sending babies home (from hospital) who have this virus, who were born with this virus and we’re not telling the parents,” she said. “We’re not telling them that they have this potentially harmful, life-changing, brain damaging virus.”

Once CMV is in a person’s body, it stays there for life, she added.

“I feel very strongly that every parent has the right to know if their baby is born with this virus,” said Robinson, noting there is no vaccine for the virus yet, but medical professionals are making it a priority.

Anti-viral treatments do exist and do work, she said.

“We know the anti-viral treatment can really help prevent that continuing damage,” said Robinson, noting there is a limited time frame, usually about three to four weeks after birth to diagnose cCMV.

“They’ve never allowed CMV to be on the newborn screening protocol,” said Robinson. “If your baby was born with CMV, you have a right to know. It’s not an insignificant detail about your child.”

Robinson and other families are looking to create a Central Alberta CMV chapter with a support network for families and children diagnosed with cCMV.

For more information on CMV visit CMV Canada at www.cmvcanada.com or contact Robinson at cmvparent@gmail.com