CMV: Why aren't pregnant women being warned about virus risk to babies

CMV: A hidden danger for pregnant women

Kate Daly's life was forever altered the day her newborn twins were diagnosed with cytomegalovirus (CMV).

Bree Pennie read all the pregnancy books. She didn’t eat soft cheeses or seafood, she didn’t drink alcohol and she had all the recommended vaccinations.

She to took every precaution she was told to take, but no one told her about cytomegalovirus (CMV).

Her son, Dax, was almost four months old and showing signs of hearing loss and developmental delay when a pediatrician first floated the possibility that she may have transmitted CMV to her baby in utero.

Bree Pennie with her 3 year old son Dax who contracted congenital cytomegalovirus (CMV)
Bree Pennie with her 3 year old son Dax who contracted congenital cytomegalovirus (CMV) Photo: Steven Siewert

Dax, now three-and-a-half years old, has quadriplegic dystonia (a subtype of cerebral palsy), epilepsy, hearing impairment and vision loss.

“Why didn't someone warn me?" Miss Pennie said.

"I would’ve followed done everything I needed to do to help prevent CMV. What pregnant woman wouldn’t?”

An Australian study has found many GPs, obstetricians, and midwives lack the confidence to talk to pregnant women about a herpes-like virus that can cause severe congenital disability and stillbirth.

A new awareness campaign aims to cut the number of congenital CMV cases in half by expunging the “patronising” approach that has kept pregnant women in the dark about CMV.

The herpes-like virus transmitted through body fluids such as saliva, tears, urine and breast milk is typically harmless in healthy people, with 85 per cent of the population contracting CMV at some point in their lifetime.


But congenital CMV can be life-threatening.

Almost 2000 babies are born with the herpes-like virus every year. Roughly 400 will develop physical or intellectual disabilities including deafness, blindness, microcephaly (small head and brain), cerebral palsy and epilepsy.

An estimated 2 per cent of pregnant women will contract CMV for the first time during pregnancy and run a one in three chance of passing CMV to their unborn baby.

Dax Roberts (front), with sister Dylan Roberts, 5, father Mitchell Roberts and mother Bree Pennie. Dax was diagnosed ...
Dax Roberts (front), with sister Dylan Roberts, 5, father Mitchell Roberts and mother Bree Pennie. Dax was diagnosed with congenital CMV, which resulted in abnormal brain development.  Photo: Supplied

Roughly 15 per cent of these babies will develop a CMV-related disability by their fifth birthdays.

Dax can’t walk or feed himself and until recently he would have up to 15 seizures a day.

“It’s bloody hard,” Miss Pennie, 35, said. “It’s financially draining, emotionally and physically draining.”

“But he is a joy. He’s so smiley and happy. Some children don’t survive."

Pregnant women with young children are at increased risk of CMV, with toddlers and preschoolers prone to catching and transmitting the virus to their mothers via intimate contact such as sharing food, dummies and utensils, or kissing on the lips.

Miss Pennie’s daughter, Dylan, was two years old when she was pregnant with Dax.

“You sterilise everything, but you never contemplate the germs inside your child’s mouth," she said.

Current Australian clinical guidelines don’t recommend routinely advising pregnant women about the risks of CMV.

A survey of 774 obstetricians and gynaecologists, GPs and midwives found more than two thirds (70 per cent) were not confident about discussing CMV with pregnant patients.

Fewer than one in ten (8.8 per cent) routinely discussed CMV prevention, found the study led by obstetrician and gynaecologist Dr Antonia Shand at the University of Sydney.

Reasons ranged from CMV advice not being standard practice, infection was rare, there was not enough time, and prevention was difficult or not possible. Close to one in five said they did not want to make women anxious.

Study co-author, virologist Professor William Rawlinson, said the “patronising” approach that failed to inform women of CMV risk needed to be overturned.

“We know CMV is the most common infectious congenital cause of illness in infants, yet we know women know virtually nothing about it,” Professor Rawlinson said.

“We need to provide practical information to parents about how to prevent passing the infection to their unborn babies."

The Congenital CMV (cCMV) Association of Australia and the Cerebral Palsy Alliance have launched an CMV awareness campaign warning pregnant women to avoid sharing food, drinks, utensils or dummies with children, kissing them on the lips, and co-sleeping.

The campaign also recommends wearing gloves when changing nappies and washing hands frequently.

Professor Rawlinson said prevention strategies could cut the risk of congenital CMV by 50 per cent.

Kate Daly president of cCMV Association of Australia said there was no excuse not to tell women about the risk of CMV.

“This is about empowerment. Women have a right to know and a right to try and reduce the risk to their babies,” she said.

One year after an international consortium of CMV experts recommended clinicians routinely educated pregnant women about prevention measures, advocates are beginning to see a shift.

NSW Chief Health Officer Dr Kerry Chant has publicly supported the campaign, and NSW Health has posted a series of social media awareness messages throughout June and encouraged Local Health Districts to do the same.

The ministry is also working towards distributing additional information to GPs, a spokesperson said.

The Royal Australian and New Zealand College of Obstetricians and Gynaecologists (RANZCOG) are expected to review a draft statement and patient information pamphlet on CMV at the next Women’s Health Committee meeting.