Mum’s horror at hidden deadly baby virus
It's the number one infectious cause of potentially fatal disabilities in newborn babies, but you probably haven't heard of it.
In infants, cytomegalovirus, or CMV as it's known, can cause a range of complications, including small birth weights, lethargy, seizures, jaundice, rashes and problems with the brain, liver or spleen.
Babies can also experience lasting problems like hearing loss, vision loss, small head sizes, cerebral palsy, developmental delays or intellectual disabilities.
And in some cases, albeit rare ones, a CMV infection can be fatal.
Brittney Huston was working in the infants' room at a childcare centre when she contracted CMV. Ms Huston said it was a "tough pill to swallow" that caring for other people's babies could have harmed her unborn child.
"I went into labour spontaneously and I had Lola who was only 2.6kg," Ms Huston said.
She was released just 13 hours after giving birth despite Lola's small size. When midwives checked in on Ms Huston at home, they urgently sent her back to the hospital.
Doctors realised baby Lola had an enlarged liver and spleen, which was causing her swollen tummy. She also presented with jaundice and a rash, typical of a CMV infection.
That was just the beginning of her problems.
Lola experienced profound hearing loss and required oxygen in hospital, as she hadn't been breathing properly, Ms Huston said.
"As a first-time mum, I was only 26 when I had her, it was a lot to take in," she said.
"We had to use gloves … and cytotoxic bags to put her nappies in. She had a compromised immune system, so we would ask people to wear masks around her so she didn't get sick."
There have been many struggles since for Lola's parents, who were constantly anxious about how their baby would develop as she grew up.
"I was always worried if we were going to go somewhere if she was going to start choking or having seizures," Ms Huston said.
"There was an instance where she choked on a bit of chocolate and her lips went blue and she was floppy. We worked out she had a weak tongue."
Doctors have diagnosed Lola, now six years old, with calcifications on both sides of her brain, profound hearing loss, epilepsy, heart murmurs and a compromised immune system, as well as a small head and body size.
Despite all of that, her mum said she's a thriving, typical little girl.
"We're seeing a speech pathologist, and we've managed to catch her up from a severe range to an average range with her speech and language," Ms Huston said.
You're more at risk of catching CMV if you already have young children or work in childcare like Ms Huston.
The Australian Government recommends pregnant employees at early childcare centres don't work with children under two years of age to minimise the risk of catching CMV.
Small children are common carriers of the virus, which can be spread through bodily fluids like saliva.
Ms Huston said her employer didn't say anything to her about the risk of CMV despite telling them early on that she was pregnant.
In her view, minimising the risk isn't enough - she believes CMV testing should be provided for anyone who could be exposed to the virus.
"I think as a parent (of a baby) born with CMV, I think there absolutely should be testing for it prior to falling pregnant or during pregnancy," she said.
The Australian Government doesn't recommend universal testing for CMV, citing the accuracy of tests as an issue as well as limited evidence of the cost-effectiveness of the test.
Other mums with CMV babies have also expressed concerns childcare centres aren't doing enough to warn pregnant mothers of the risk of infection.
Only one in six women who are pregnant or planning a pregnancy are aware of the dangers of CMV.
Alana Ansell's two oldest children were attending a day care centre when she was infected with CMV, almost five months into her pregnancy with baby Ezra.
She said it's likely her other children brought home the virus from the centre, which had policies to protect pregnant employees but failed to advertise the risks to pregnant mums.
It's a policy that needs changing to increase awareness to all at-risk pregnant mothers, Ms Ansell believes.
"At the time I was pregnant, there were also six other mothers who were pregnant, and they didn't know about it," Ms Ansell said.
When the doctors told Ms Ansell she had contracted CMV, it was the first she had heard of the virus. The diagnosis forced her to prepare for worst-case scenarios.
"We were preparing for the possibility that we would have a sick baby," she said.
"We had to tell our young children that he's not very well and that we might not get to keep him forever. To this day, they still ask, you know, 'Mummy can we keep him for longer?'"
Ms Ansell's baby was one of the lucky ones; born asymptomatic, little Ezra is just like any other five-month-old baby.
Despite this, the Ansell family is still bracing for the possibility their little boy could lose his sight or vision.
Babies born asymptomatic for CMV are commonly at risk of losing some of their sight or hearing later in life.
A recent hearing test indicated Ezra might already have mild hearing loss in his right ear. At a minimum, these hearing tests will occur every six months for the first five years of his life.
"We were worried because when you get a CMV diagnosis, it's kind of the unknown, you don't know what might happen," Ms Ansell said.
"It was very stressful. We were offered terminations up to 36 to 37 weeks, you know, we weren't sure what the extent of his disabilities would be.
"To look at him, he's perfect, you would never even know that he's got CMV. He's perfect, he's your average five-month-old baby."
CMV Australia suggests pregnant women reduce their risk of catching CMV by:
• Washing hands frequently with soap and running water for at least 15 seconds and drying thoroughly - particularly after close contact with young children, changing nappies, blowing noses, feeding or handling toys, dummies, etc.
• Not sharing food, drinks, utensils or toothbrushes with young children
• Avoiding saliva when you kiss your child
• Using detergent and water to clean toys, counter tops and other surfaces that come into contact with a child's urine, mucous or saliva
• Taking particular care when working in childcare and practising good hygiene, especially when changing nappies or blowing noses.
To find out more about CMV, visit the CMV Association of Australia website.