I didn’t know what those three letters meant – and I certainly didn’t know what they could mean for the little life growing inside me.

A week later I knew.

A week later, I found out I was pregnant, and how CMV could profoundly affect our unborn child.

How it could impact our baby’s life with possible hearing loss, visual impairment, intellectual impairment, epilepsy, cerebral palsy, even stillbirth.

CMV is a common flu-like virus that can be so benign people often don’t even know they have it. But for something so common, it remains frighteningly invisible.

There’s no vaccine and, despite national recommendations, it’s often omitted from routine and antenatal education and there’s minimal public messaging around the simple steps that could help prevent it.

As I watch Tom, now two years old, bound through the halls of our home, laughing and playing with his big brother, Louis, 4, I am profoundly aware of how close CMV came to changing our lives.

CMV – the most common virus passed from mothers to babies during pregnancy – was detected very early in my pregnancy.

I was prescribed antiviralsand took eight tablets a day for four months to help reduce the risk of my baby getting the infection.

Maybe it didn’t change anything, but maybe it changed everything. It certainly changed me.

I did not pass CMV on to Tom but what I experienced through that pregnancy – fear, uncertainty, overwhelm, helplessness – will always stay with me.

Mostly, I am shocked at how few people know about it.

This is the virus every parent should know about. This is why I want to talk about CMV. To bring it into conversations. To make people aware of it. To give families a better chance at protecting their children from a virus most have never heard of.

Researchers estimate around 1500 babies are born with CMV every year in Australia and at least 150 of these will go on to have lifelong disabilities including hearing loss, cerebral palsy and epilepsy.

It is the most common infectious cause of disabilities in newborns.

And while pregnant women are routinely warned to avoid soft cheese and raw meats to prevent risks of listeria and toxoplasmosis infections, CMV – 30 times more common – barely gets a mention.

Drawing on published Australian research, Cerebral Palsy Alliance says 80 per cent of pregnant women have never heard of CMV and only 10 per cent of maternity professionals routinely discuss CMV with pregnant women in their care.

For most healthy people, CMV is harmless. It spreads easily, often from toddlers to their parents, through contact with bodily fluids like saliva, urine or mucous.

About 60 per cent of the population have already had CMV at some point in their life and have developed some immunity. Once a person has had it, it remains dormant in the body for life and can reactivate.

But when contracted around conception or during the first trimester of pregnancy, this virus can impact the development of the fetus. My specialist throughout my pregnancy was Dr Glenn Gardener, Mater Hospital’s maternal fetal and obstetric medicine director.

He says CMV is at its most dangerous when a pregnant woman contracts it for the first time in the first trimester.

“In the first trimester the baby is more vulnerable to the virus and it can cause significant injury to the developing brain,”
he says.

In some cases it can lead to intellectual impairment, cerebral palsy and epilepsy. Hearing or vision impairments can also result from CMV infection in early pregnancy. Symptoms can also develop later in a child’s life.

Gardener says the risk of the virus harming the baby is low if infection occurs later in pregnancy.

“Newborns that have been exposed to CMV during pregnancy require hearing and eye checks into early childhood which can be worrying for parents,” Gardener says.

The most heartbreaking – although highly rare – outcome of CMV is stillbirth.

“Rarely CMV infection in pregnancy can be so severe and overwhelming that it can cause a stillbirth,” says Gardener.

Such is the unpredictable nature of this virus, however, that with most infections both the mother and baby will not be harmed.

“When primary infection (first-time infection) occurs in the first trimester but the virus doesn’t cross the placenta, the baby is safe,” Gardener says.

But, as with many situations in life where the outcome is uncertain, it’s the not knowing that’s the hardest.

For the first four months of my pregnancy – 120 days – Liam and I didn’t know if our baby would be healthy. We didn’t know if he would have a mild or severe disability. We did not know if he would survive.

For four months, we didn’t know which way our story would go. That’s how long would-be parents have to wait until their unborn baby can be tested for CMV.

The relentless mental and emotional toll throughout those months hit me with unexpected force – how small the margin felt between hope and fear and how easily the days could flip from feeling OK to just holding on.

Not knowing how CMV would impact our baby robbed the joy from those early months and I told very few people I was pregnant.

Professor Lisa Hui, a specialist in maternal fetal medicine and CMV at the University of Melbourne, says the mental impact of CMV can be very distressing.

“I think it’s one of the hardest parts of these journeys, when you’re given this information when you are pregnant because the outcome could be fine or it could be devastating,” she says.

“There’s just a swinging from one extreme to another and it is really emotionally hard for the couple.

“We can give people some idea of what we expect to happen for the baby based on the ultrasound findings, but we can never be 100 per cent in control of what the outcome is.”

Queensland mother-of-three, Mel Hartfiel, still remembers the shock of being told her second child, Jameson, had CMV when he was born five years ago.

She describes how quickly her pregnancy changed from appearing normal to their world being shattered after a routine scan at 35 weeks showed abnormalities on Jameson’s brain.

Doctors listed all the potential possibilities – CMV was among them.

“Then they said, these are the complications that could happen: there might be trouble breathing, trouble eating, quality of life could be poor,” Hartfiel says.

“He might not ever be able to walk or talk. I remember being offered a medical termination.

“I was like, absolutely not, we are going to power through and I called my mum and said ‘What do I do?’ and she goes, ‘Whatever happens, we’ll deal with it together.’

“My world was just tipped upside down.

“I remember sitting in my closet in my room just crying because I was thinking, ‘How did we get here?’”

Jameson, now five, was diagnosed with CMV and profound hearing loss when he was born in July, 2020.

He has since been diagnosed with global development delay (GDD) and ADHD. Hartfiel still can’t comprehend how little she knew of CMV and its risks until it was her reality despite spending her career working in childcare and falling pregnant withJamesonthrough IVF.

“It was crazy because I knew nothing except the letters,” says Hartfiel, a childcare educator who lives north of Brisbane in Narangba with her husband, Brad, and their two other children, Landon, 12, and Beckett, 1.

“When you talk to people about it, they have no idea what it is. It’s just not talked about enough.

“There needs to be bigger discussions around the seriousness of it.”

This need for more is what propelled mother-of-four and founder and president of CMV Australia, Kate Russ-Daly, to create an organisation she wishes she had when her twins were born with CMV.

Russ-Daly first heard of CMV when one of her twins, William, now 15, was diagnosed with hearing loss at three weeks old.

William’s twin sister, Emmaline, was also diagnosed with CMV, but was born without any symptoms.

William’s hearing deteriorated by the time he was nine months old and just after he turned one, he was given cochlear implants.

Russ-Daly says William has since been diagnosed with cerebral palsy, severe intellectual disability, L3 autism, seizures, severe apraxia (speech motor planning), dyspraxia (motor planning), ADHD, generalised anxiety disorder and gut dysmotility.

“He is basically non-verbal with quite complex behavioural difficulties,” says Russ-Daly, who lives in Thornleigh, NSW, with her husband, Hugh, and their other children Ellen, 19, and Grace, 17.

All of their children were born through IVF, but Russ-Daly says despite all the tests and appointments, CMV was never discussed.

“I had never heard of CMV before William’s hearing loss diagnosis when he was three weeks old and was never tested by any of my doctors,” she says.

“I didn’t realise there was a very common virus causing disabilities because no one
told me.

“I followed all the rules about not eating deep sea fish or shellfish, I didn’t eat processed meat or soft cheeses, I didn’t go near any animal faeces, I would cross the road if anyone had a lit cigarette and I didn’t touch alcohol.

“I was absolutely devastated and when I realised I could have minimised my risk of contracting it, I was angry, disillusioned and disappointed.

“The fact that each pregnancy was obviously planned and discussed with my GP, fertility specialist and obstetrician just made it worse.”

She believes if doctors had counselled her about CMV at any point prior to the pregnancy, “the outcome could have been different”.

“I personally know that if I had been counselled about it by any of my doctors, I would have taken additional precautions,” Russ-Daly says.

“I really would have liked the opportunity and feel that my autonomy was undermined due to the lack of awareness within the medical community itself.”

William and his three sisters are her strength. Her light. Her love. Her heart. And it is her extraordinary son who inspired her to create CMV Australia in 2012.

The organisation is among those leading the effort to give this silent virus a voice and calling for stronger awareness on all levels.

“I would like every doctor to learn about CMV as well as they learn about every other risk during pregnancy, and I would like every doctor to be counselling their patients as soon as they have the opportunity, before pregnancy if it is planned or on their first visit confirming pregnancy,” she says.

“I think a larger government-endorsed PR/education initiative needs to happen somehow on a national level – like ‘slip, slop, slap’ for sun cancer.”

So why have so few people heard of CMV and its implications?

In part it’s due to a lack of treatment
options in the past and the ability to identify a baby at risk.

It’s also why testing for CMV in pregnancy has not been routinely recommended in many countries due to concerns that such an approach could do more harm than good.

But things are changing.

There is now a proven treatment to reduce the risk of the virus passing to the unborn baby should a woman be infected in early pregnancy.

The Australian government Department of Health and Aged Care recently strengthened its Pregnancy Care Guidelines to recommend all “high risk women” be tested for CMV, this includes pregnant women in close contact with young children.

Australian-based research into CMV is driving vital discussions into screening in pregnancy, preventions and education as well as highlighting advancements in antiviral treatments.

I took one of those treatments – valaciclovir – and it may have changed our lives.

Since then there’s been more substantial research into valaciclovir’s effectiveness in reducing transmission of the virus across the placenta and improving outcomes in pregnant women with primary CMV infection.

There’s also an option for babies born with CMV to be offered antiviral therapy to help reduce their symptoms.

Not only that, scientists say preventing CMV transmission during pregnancy is indeed possible.

However there have been setbacks, most recently when major international pharmaceutical company Moderna announced in October that its international trial for a CMV vaccine failed.

Despite this, Professor Rajiv Khanna, distinguished scientist at QIMR Berghofer and co-director of Queensland Immunology Research Centre, who has been working on developing a CMV vaccine for over a decade, remains optimistic.

He says they’ve never been closer to a breakthrough but need more support to achieve this.

“Some level of investment is required for these programs to progress from research labs out of the clinic. That’s a huge, huge challenge,” he says.

“Unfortunately in Australia we do not appreciate how important CMV is.”

Khanna envisions a future where a CMV vaccine becomes part of the routine immunisation schedule for young children.

“The target population for CMV vaccine will be males and females 9-plus years, with a booster dose given before pregnancy, similar to rubella vaccine,” Khanna says.

In the meantime, however, doctors say the most powerful CMV prevention measures are simple hygiene precautions such as regular hand washing, avoiding kissing young children on the lips and not sharing their food, drinks or cutlery.

And women like me and Mel and Kate are telling our stories to raise awareness about this largely unknown virus and its possible outcomes.

For all the mums-to-be. And for all our children.

For more information visit cmv.org.au or cerebralpalsy.org.au