Worry about cytomegalovirus, not Zika: support group

The Daly family, Hugh, Ellen, Emmaline, William, Grace and Kate

Mothers from the Congenital CMV Association Australia are on a mission to raise awareness of cytomegalovirus, which they say few Australians know about.

One in 150 children is born with cytomegalovirus, the most common infectious and viral cause of disabilities to newborn babies. However, health professionals and families alike are generally unaware of the disease, its prevalence and how to help prevent it, group spokesperson Kate Daly told the AJP.

The support group is taking to Facebook with the aim of raising awareness about congenital CMV to allow other parents the opportunity to minimise their risk of contracting the virus and passing it onto unborn babies.

“We need to talk about this, whether it’s with pharmacists, GPs, obstetricians, midwives or mothers – we need to get this information out there,” says Daly.

“Unfortunately CMV has been around for about 60 years now, and perhaps because it’s a stealth virus there’s been a silence surrounding it.

“Myself and hundreds of other mothers who have ended up with children with disabilities – or lost children to CMV – were all pretty shell-shocked when we found out we have an effect of a virus we were never told about and never warned about.”

Daly says that parents wanting to start a family are frequently warned about conditions like fetal alcohol syndrome, spina bifida, toxoplasmosis, Down syndrome and these days, Zika virus, but not CMV – which is more common than all of them.

Studies in Australia have shown that out of 1,000 live births, about six infants will have congenital CMV infection and one or two of those six infants (about 1 in 1000 infants overall) will have permanent disabilities of varying degree, the group says.

These can include hearing loss, vision loss, microcephaly, cerebral palsy, developmental delay or intellectual disability, epilepsy, motor planning problems, feeding issues and death. At least one affected child with congenital CMV is born in Australia every day.

Mothers can help reduce their risk of contracting the disease, which may present with cold symptoms, by good hygiene practices, particularly around their existing small children.

“The message is to encourage mums to be a little more diligent, because there is a very common illness that, if they’ve never had it before and they get it when they’re pregnant, means a risk their unborn baby will contract it and possibly have disabilities,” says Daly. “It’s the biggest cause of disability in newborn babies.

“Often as a mum you’re not too careful about hygiene with your own children – but pregnant women just need to modify their behaviour a little, be more diligent around wiping a toddler’s nose, wash their hands a little more often, and not share things like forks, spoons and cups.

“It’s especially important for mums who have toddlers in childcare or preschools. With me, I had a four-year-old and two-year-old at the time I was pregnant with twins.”

Daly’s son William’s mild hearing loss was detected at birth, but over his first year became profoundly deaf; he now has a cochlear implant, moderate global developmental delay and very mild cerebral palsy and motor issues. Daly says this is around the middle of the range of severity of congenital CMV-caused disability. The twins are now five years old.

She encouraged pharmacists to help spread the message to pregnant women.

“By being aware and taking steps to prevent it, you can reduce your risk of getting it by 50%,” she says.

Symptoms of CMV may include swollen glands, a sore throat and slight fever as well as other cold-like symptoms.

Image: Daly with husband Hugh, and children Ellen, Grace, Emmaline (William’s twin) and William.

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