Charlie and Tam Hutchins had only been home with their newborn daughter Callie for a week when she was struck down by a potentially deadly virus.
The Mt St Thomas couple had never heard of human parechovirus but it’s a disease that’s on the rise in Australia, with epidemics occurring every two years since 2013.
And while most infections cause mild respiratory or gastrointestinal illness, it can have serious – even life-threatening – implications for young babies.
For little Callie, born on October 24, 2017, it nearly proved fatal.
"There were no issues at birth and then at seven days old I took her to Wollongong Hospital’s emergency department because she’d become extremely irritable and was refusing to feed," Mrs Hutchins said.
"She deteriorated rapidly and broke out in a bright red rash all over her body. She then started having apnoea – where she would stop breathing – and her heart rate soared."
Callie was rushed to the intensive care unit of Sydney Children’s Hospital, but became more and more lethargic and then she started having seizures.
"She was incubated and spent three days on life support – which was the worst three days of our lives," Mrs Hutchins said.
"Thoughts were running through my head that I shouldn’t have to think about with a one-week-old baby. I didn’t know if we would be taking our baby home or not."
Tests results came back positive for the little-known parechovirus. Scans confirmed the couple’s worst fears – the virus had caused extensive brain damage due to encephalitis (inflammation of the brain).
"There was nothing anyone could do other than support Callie and wait for her body to fight the infection off," Mrs Hutchins said.
"She eventually started to improve and at three weeks old we were able to bring her home with a nasogastric tube still in place, and daily check-ups at the hospital."
Callie has since been diagnosed with cerebral palsy, cortical visual impairment and global developmental delay. She undergoes a range of different therapies but the couple don’t know what her future holds.
What they do know is that the first few years of life are vital for her development, so they’re ensuring that she gets the best support available.
They’ve already been to the world-renowned Napa therapy centre in Los Angeles and will take Callie to the Sydney Napa centre twice in 2019. Next August, they’ll also travel to Panama for stem cell therapy.
"These are not cures, they are treatments that will hopefully improve her vision, help with her movement and tone and cognition," Mrs Hutchins said. "At the end of the day we don’t know how well she’ll do. We just want her to one day be independent and happy and function as a member of society and not struggle."
Unfortunately, therapies don’t come cheap, but a group of friends have come to the rescue – setting up an online fundraiser to help with costs. They’re also organising a trivia evening on December 8 at Wollongong Collegians club, which has been supported by a range of local businesses.
And on Wednesday November 28, Bostons Espresso in Wollongong will donate $1 from every coffee sold towards the cause.
There’s no vaccine for parechovirus, with NSW Health recommending good hygiene and handwashing as the best protection. People who are unwell with colds, flu-like illness or gastro should stay away from small babies.