‘We kept thinking there is just not enough known about this’ : Hugh and Hanako’s story

'We kept thinking there is just not enough known about this' : Hugh and Hanako's story
Posted on Tue 8 Jun 2021

This article was originally published in the Sydney Morning Herald on Sarturday 5 June, 2021. Head here to see the original.

Hanako Stump was familiar with the incessant hum of warnings that accompany pregnancy: Don’t eat sushi. No soft cheese. Avoid changing cat litter.

But, like most women, she had little – if any – awareness about cytomegalovirus, an infection that can cause severe disability and even be life-threatening in developing babies.

We were preparing for the worst in many ways, and we kept thinking there is just not enough known about this.

Now there is new hope that a vaccine could soon be produced that will provide pregnant women with immunity against the infection.

For Ms Stump, 31, a florist from Orange, everything was normal in her pregnancy until the 28-week scan.

“The ultrasound showed up some extra fluid around the baby’s heart and it just snowballed from there.”

CMV is a known cause of cerebral palsy. That's why CPA has launched CMV Awareness Month - head here to find out more.

Ms Stump and her husband Hugh, 32, a GP, were sent to Nepean Hospital for a series of tests, an MRI and an amniocentesis that would eventually lead to a diagnosis of CMV. Their youngest daughter, now six months, was born with profound hearing loss.

“We were preparing for the worst in many ways, and we kept thinking there is just not enough known about this,” said Ms Strump.

CMV, a member of the herpes family, is an often harmless viral infection that can cause mild flu symptoms, if any, in healthy people. But in pregnancy a CMV can be passed onto a woman’s unborn baby through the placenta and cause developmental delays, miscarriage, stillbirth, hearing loss and mental disability.

Despite being the most common infectious cause of disabilities in newborns it is still largely unheard of by most newly pregnant women, says Dr Antonia Shand, a maternal fetal medicine specialist at the Royal Hospital for Women in Randwick.

About 1 in 150 women will contract CMV during pregnancy in Australia and about 350 babies will be born with a medical problem due to the virus.

“They all say to me they’ve never heard of this infection. And then are shocked to hear something could have been done about prevention,” Dr Shand says. “Everyone knows you shouldn’t drink or smoke or eat ham … but women don’t know about the steps they can take to reduce their risk of CMV.”

She said washing hands, avoiding sharing food and drinks with young children and not kissing young children on the lips are critical in reducing infection. Women can often pick up the virus from other children, many bringing the infection home from childcare. It is frequently transmitted via saliva, tears, urine and breast milk, with most people contracting it during their lives.

“It is so important for women to know about it before they are pregnant. By the time a woman is already pregnant they are already at risk,” Dr Shand said, noting that only about 20 per cent of women consult a doctor in pre-pregnancy. Current RANZCOG guildelines state that women should be warned about CMV and prevention as part of routine antenatal care, including hygiene measures to reduce risk. The official guidelines were released in 2019.

Everyone knows you shouldn’t drink or smoke or eat ham … but women don’t know about the steps they can take to reduce their risk of CMV.

Professor Bill Rawlinson, a senior medical virologist at the University of NSW, said every week at least “one baby will be born in Australia with a problem due to CMV. About 20 per cent of those will have a neurological disability.” He said the majority will have hearing loss but if caught early those babies can go on to achieve normal intellectual capacity.

He said while the issue of routine screening is “vexed”, the consensus view is to test in cases where women are very unwell with viral symptoms or have an abnormal ultrasound, although 50 per cent of women who contracted CMV for the first time are asymptomatic.

“Routine screening is being done in a number of countries, including Israel, and we need to continuously update our thinking in this area,” said Professor Rawlinson.

He said Moderna, a biotech company that is now famous for developing an effective mRNA vaccine for COVID-19, is moving into phase 3 trials as part of research into a vaccine for CMV.

“There is no really good treatment but some studies suggest antiviral medication may be of benefit. A vaccine would be wonderful, this is all new territory. It is great we now have new [mRNA] vaccines that could be applied to other illnesses. But research is still in the early stages.”

For Ms Stump’s daughter, a failed newborn hearing test later led to surgery for bilateral cochlear implants when she was four months old.

“She’s just defied all the odds,” said Ms Stump “She’s hitting all milestones. It’s all very unknown from here and she still has a chance of severe disability and it looks like she may have mild cerebral palsy. But they expect she will walk. And she is the most happy, joyful baby.”

CMV is a known cause of cerebral palsy. That's why CPA has launched CMV Awareness Month - head here to find out more.

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