ANYONE taking a passing look at Spencer Smith sees a normal, healthy baby surrounded by his loving family.
But the six-month-old suffers complications from a deadly medical condition that this month required brain surgery.
At four weeks old, Spencer, of Benalla, was diagnosed with hydrocephalus. It occurs when there is too much cerebro-spinal fluid in the brain.
The condition can be congenital or it can be acquired later in life.
If left untreated, the fluid collects, causing the head to swell like a balloon. And that can lead to severe mental disability and death.
Treatment involves the insertion of a shunt, which drains the fluid from the brain.
But the shunts have a 50 per cent failure rate in the first two years — the highest failure rate of any medical implant.
It means sufferers are left living with a ticking timebomb when, at any moment, the shunt could fail, either through an infection or if it becomes dislodged in a bump or fall.
When his parents, Maddi Hawes and Aaron Smith, finally took Spencer home from hospital, two months after his diagnosis, they were told to look out for vomiting, oversleeping or under-sleeping, all common in many healthy babies.
As Spencer cried during the photo shoot and interview with The Border Mail, his parents were wondering whether he was in pain from teething — like any normal baby his age — or there was something seriously wrong.
“It’s been a roller coaster of emotions; one day you feel you’ve got a grip on what’s going on and what he needs and then you have days like this when you feel like you just don’t know whether it’s his shunt playing up or it’s normal baby things,” Ms Hawes said.
“It always makes you second-guess everything he does.”
The condition affects one in every 500 Australian babies each year — twice that of Down syndrome — and is the most common clinical problem addressed by paediatric neurosurgeons.
Yet there is little public awareness of the condition and only a small amount of government funding is directed at finding a cure.
Like many Australians, Ms Hawes and Mr Smith had never heard of hydrocephalus before Spencer’s diagnosis.
They say when they were first told of the condition, it hadn’t been explained in detail and the three months since taking Spencer home had been a living nightmare with little support or information provided.
“It was like, ‘oh by the way he’s got this’,” Ms Hawes said.
“I felt so under-qualified to have a baby with his needs at home.”
Mr Smith said living in a regional town had made it all the harder, with Benalla general practitioners not trained to recognise or treat the condition.
“We don’t want them to fix it. We just want them to be confident enough to say ‘yeah, he’s OK’,” he said. “Sometimes I find it hard to sleep at night when thinking about him.”
Ms Hawes and Mr Smith are calling for more resources to find better treatment and support.
“There is not enough being done in Australia — there haven’t been any major changes in treatment since the 1960s,” Ms Hawes said.
After the picture was taken by The Border Mail this month, Spencer’s parents’ fears were realised when they discovered his crying was as a result of a dangerous shunt failure when it had become dislodged.
He had neurosurgery at the Royal Children’s Hospital in Melbourne the next day and is now recovering.
Just $200,000 a year could make a world of difference to the one in every 500 babies born with hydrocephalus in Australia each year. Many more children and adults acquire hydrocephalus as a result of accidents and, left untreated, it can cause severe disability, even death. Yet there is little public awareness of the condition and not enough government funding. Fairfax Regional Media is launching a campaign to change all that, but we need your help.
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