CMV: A hidden danger for pregnant women
Kate Daly's life was forever altered the day her newborn twins were diagnosed with cytomegalovirus (CMV).
Kate Daly's existence cleaved in two the day her newborn twins were diagnosed. There is her life before she had ever heard the word cytomegalovirus, and her life upended by it.
It was several months later that she discovered taking simple hygiene precautions during her pregnancy could have significantly cut the risk of her passing on the infection to her children; the infection that has left her son William profoundly deaf, developmentally delayed and with mild cerebral palsy.
"I was so angry, so frustrated. I still am. I felt disillusioned," Mrs Daly said. "I didn't understand why no one had ever mentioned CMV, or told us there were things I could do to protect my children from this thing."
Almost 2000 babies are born with congenital CMV every year in Australia. Roughly 380 of these will have a permanent disability, including hearing and vision loss, developmental delays, intracranial calcification, microcephaly (small head and brain), cerebral palsy and epilepsy. In rare cases the infection can be fatal.
It's a relatively rare condition, but the most common infectious cause of disability in newborns. Pregnant women are not routinely warned about their risk of contracting the herpes-type virus and passing it onto their babies.
Having a four-year-old and two-year-old at home meant Mrs Daly was at greater risk of contracting the virus. One in three children excrete CMV, research suggested.
Young children are prone to catching the virus at childcare, and passing it onto their mothers via intimate contact including sharing food or utensils, kisses on the lips or nappy changes.
"My four-year-old was very affectionate. She'd give me a kiss smack bang on the lips. If I'd known I'd be more careful," Mrs Daly said.
Now six years old, William's twin sister, Emmaline, has developed a learning disability, likely the result of CMV.
"We were hoping and hoping [she wouldn't be affected]. She's aware of it too," Mrs Daly said. I'm just so sad for her. It's really unfair."
"When I was pregnant I followed all the medical advice to the nth degree: no deep sea fish, no shellfish, I took my [vitamins] ... I made my husband put the petrol in the car. I wasn't going to take any risks with my babies," said Mrs Daly who founded the support and awareness organisation CMV Australia.
"I would have been just as diligent about CMV risk factors if I'd known."
Too often William Rawlinson breaks the news to his pregnant patients that their baby is at risk of contracting CMV.
"They just cry ... they say 'why didn't anyone tell me?' " he said.
"They look at me as if it's my fault, and in a way they're right. As healthcare professionals we should be informing women about CMV."
International guidelines do not recommend routinely warning pregnant women about CMV on the grounds that they could unduly worry patients, and there is no vaccine.
But Dr Rawlinson said this advice was out of step.
"It's patronising not to tell women about a serious infection they could pass onto their baby on the basis that you don't want to worry them," Dr Rawlinson said.
Precautions included not sharing food, drink utensils or dummies with children, avoid kissing on the lips and co-sleeping, and wear gloves when changing nappies.
Dr Rawlinson, a senior medical virologist at UNSW, was lead author of new recommendations for CMV prevention, diagnosis and treatment compiled by an international consortium of CMV researchers and published in the Lancet Infectious Diseases .
They called for all pregnant women and healthcare providers to be educated about CMV and prevention strategies and to offer CMV serology testing to pregnant women who develop flu-like symptoms.
Roughly 2 per cent of pregnant women will contract CMV for the first time during their pregnancy. A woman with a primary infection has a one in three chance of passing CMV to their unborn baby. Roughly 15 per cent of those babies will develop a disability as a result of the disease by five years old.
The expert group did not recommend universal screening of mothers, but encouraged policymakers to consider universal screening of CMV for newborns.
Royal Australian and New Zealand College of Gynaecology president Steve Robson said the CMV prevention strategies were similar to those endorsed by RANZCOG.
But he said reducing the risk of CMV was more complex, considering the virus was ubiquitous (though dormant) among the general population, and congenital CMV was a relatively rare infection.
"CMV is an important cause of congenital disability, but it's a relatively uncommon condition," Professor Robson said.
He stressed the importance of good hygiene, especially among pregnant women who worked in childcare settings and those with children in childcare but stopped short of recommending routinely warning pregnant women of the risk of CMV.