The common but little-known virus causing disability in hundreds of babies
It was a plate smashing on the kitchen floor that first alerted Catherine Bradshaw that something was amiss with her six-month-old daughter, Kirsten.
“She didn’t react,” Bradshaw recalled.
Catherine Bradshaw with husband Jarrod Gorman and daughter Kirsten.Credit: Luis Enrique Ascui
The concerned family took Kirsten to a hearing clinic where she was diagnosed with profound deafness. Four months later, after Kirsten failed to meet milestones including holding up her head, she was diagnosed with cerebral palsy.
In their quest for answers, doctors pored over Kirsten’s newborn blood spot screening card and discovered she was born with cytomegalovirus, or CMV, a common but poorly understood virus that causes about 400 Australian babies to be born with physical or intellectual disabilities every year.
The disabilities include deafness, blindness, cerebral palsy, epilepsy and intellectual impairment.
In an Australian-first study, pregnant women at the Mercy Hospital for Women in Melbourne’s north-east are being offered testing to see if they have acquired a CMV infection during their first trimester.
A few drops of blood are taken for the newborn screening test.Credit: Angela Wylie
Those at greatest risk are women who care for or work with toddlers and who haven’t been previously infected with the virus, which 85 per cent of the population is estimated to contract at some point in their life.
The virus is particularly prevalent in daycare and spreads via bodily fluid such as saliva, mucous and urine.
As part of the study, women who have not had a prior CMV infection will be offered another blood test at the end of their first trimester. If a new infection is detected, antiviral medication will be offered to lower the risk of the virus being passed onto the unborn baby.
“We do a blood test because women don’t usually have any symptoms when they catch it,” explains Professor Lisa Hui, a maternal fetal medicine specialist involved in the study.
The women receive information on how to avoid catching the virus, which includes not sharing food with toddlers, not kissing children on the lips and washing their hands after changing nappies or wiping noses.
This is advice that all pregnant women are recommended to follow, regardless of whether they have been infected with the virus before. This is because they can be reinfected with a new strain.
These precautions were not shared with Bradshaw when she became pregnant with Kirsten in 2006.
“We are given a list of all the foods to avoid,” the Torquay mother said. “But there was no education on this.”
Kirsten is now 17 and uses a wheelchair, has progressive lung disease, is fed via a tube that goes into her stomach and has undergone 16 operations.
She uses a computer to communicate with family and friends, has a cheeky sense of humour and loves AFL team Geelong and the ocean.
“We are at a stage where there is nothing we can do to make her lungs better. We are just supporting her through that and making her comfortable. We are enjoying her while we’ve still got her,” Bradshaw said.
For the first time, new European guidelines recommend that all pregnant women are tested for evidence of prior CMV infection.
In Australia, screening is considered only for pregnant women who care for young children, but the Royal Australian and New Zealand College of Obstetricians and Gynaecologists is reviewing its guidelines.
A federal Health Department spokeswoman said its pregnancy care guidelines were also being updated and would consider the latest evidence when it came to communicable diseases such as CMV.
Dr Hayley Smithers-Sheedy, an associate professor at the Cerebral Palsy Alliance Research Institute at the University of Sydney, said 10 per cent of children with cerebral palsy had signs of a CMV infection from their newborn screening card.
Smithers-Sheedy, who is spearheading an awareness campaign along with the CMV Association, said many GPs, obstetricians and midwives did not routinely discuss the risk of the virus with pregnant women.
“They have so much to tell women about, and so many patients to look after,” she said. “I think CMV has just not cut through. We’re trying to change that.”
Start the day with a summary of the day’s most important and interesting stories, analysis and insights. Sign up for our Morning Edition newsletter.