Mum’s quick-thinking actions saved son from deadly disease

Felicity Harley and her husband, former AFL star Tom Harley, know just how lucky they are that son Hugo survived a bout of meningococcal disease when he was five weeks old.
The Sydney-based couple were at home on Easter Saturday, 2015, when Hugo first showed signs he was unwell.
“He got a temperature, he was feeling really hot,” Felicity Harley, a journalist, podcaster and author, recalls to 9honey.
“I gave him some Panadol and then for the next two hours it just never came down, and I just remember I was very obsessively recording his temperature on my phone and it just kept going up.”
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The Harleys were already parents to a son Jimmy, who was two years older, so had experienced the usual childhood illnesses before, but something about Hugo that day had Felicity on edge.
“He was never upset but he started becoming a lot more listless and then his temperature went up to 39 or 40 degrees Celsius,” she recalls.
“I just remember having this conversation in my kitchen, and I said ‘Something isn’t right. His temperature is not coming down with Panadol. We have got to take him to hospital.'”
The Harleys drove 20 minutes to Sydney Children’s Hospital at Randwick. By the time they stepped inside the doors of the emergency department, Harley noticed her son was “really grey.”
The staff sprang into action.
“They were so fast,” she said, “They took us straight in and they have a list of things and they sort of just start at the bottom – ‘Is it a virus? Is it pneumonia?’
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“They got a catheter in pretty quickly and they started giving him antibiotics straight away.”
It was that decision that probably saved Hugo’s life.
Hugo was admitted to hospital, where a lumbar puncture the next day revealed he was battling a “really serious infection.”
Meningococcal disease was mentioned, but it would be 48 hours before the results came back.
Until then, there was nothing Harley could do but wait.
“I would not let him out of my arms,” she recalled. “I just remember he was grey, he was listless, and the temperature would not come down.”
Then 48 hours after they arrived at hospital, the Harleys were told Hugo had tested positive for meningococcal disease.
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Harley said she immediately fell apart.
“I was not in a good state of mind at all,” she said.
“I knew about meningococcal disease. I had seen the pictures of the rash and heard about limbs being amputated, but I also knew there are a whole raft of problems that could occur, from hearing loss to learning difficulties, that would affect the rest of his life.”
Hugo was treated with IV antibiotics in hospital for eight days before going home.
For years, Harley monitored her son’s milestones and is relieved that Hugo, now nine, escaped unscathed.
But Harley knows not everyone is so lucky. That is why she and her husband raise awareness of the disease and urge parents to be on the lookout for any of the early symptoms and act quickly.
“Hugo never got the rash,” she said.
“[Doctors] repeatedly said that because we acted when we did and got him [to hospital] so quick we potentially saved his life.”
Meningococcal disease is a rare but potentially life-threatening illness caused by the Neisseria meningitidis bacteria. There are a number of different strains, with A, B, C, W and Y the most common in Australia.
The majority of cases occur in late winter and early spring, with the disease mostly affecting children under the age of two, teenagers aged 15-19 and young adults.
Invasive meningococcal disease is the most serious form of the disease, with 10 per cent of patients dying, often within 24-48 hours of first showing symptoms.
Those who survive often require life-changing limb amputations.
Sydney-based GP and father-of-three Dr Sam Hay told 9honey it was important to educate parents about the symptoms of the disease, which affects about one in 100,000 people.
“I do not think there is a need for panic but I do think it is important to be aware about it,” he said.
“It’s a rare condition but it’s catastrophic. In about one in 10 people it is fatal, but you can also have permanent disabilities.”
According to the National Notifiable Disease Surveillance System data, there have been 93 reported cases of meningococcal cases across Australia up to September 19 this year, with four new cases the previous week alone.
There have been 28 cases in Queensland, 20 in NSW, 19 in South Australia, 16 in Victoria, nine in Western Australia and one in the Northern Territory.
Earlier this month, health authorities in Far North Queensland declared a “major outbreak” after three new cases of the meningococcal B strain of the disease in just three weeks.
In 2023, there were a total of 143 cases across Australia, up from 125 the previous year. 
Dr Hay says if a person presents at hospital showing signs of meningococcal disease, doctors will often start them on antibiotics even before they know for sure they have infection — a protocol which has been credited with saving lives.
“It starts as a simple flu-like illness but you can go down quite rapidly, and the rash that a lot of people know about actually [appears] late,” he said.
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“What you are looking out for is if the child becomes unwell very quickly.
“That is what sets meningococcal disease apart. Kids tend to get very sick, very quickly.”
While the tell-tale red or purple rash is the best-known symptom, not all sufferers will get a rash and if they do, it often occurs late.
He urged parents to seek medical attention if a child becomes floppy, drowsy, listless, loses consciousness, has a high temperature, or has trouble breathing, which can appear as flaring nostrils or tugging at their chest.
Dr Hay recommends parents talk to their doctor about the best way to protect their children from the disease.
Under the National Immunisation Program, a free vaccine for Meningococcal ACWY is available from 12 months of age.
The Meningococcal B vaccine is also available from six weeks but only some states offer the vaccine for free.
According to NSW Health, symptoms of meningococcal disease are non-specific and can be difficult to spot, but can include:
In very young children, symptoms can be even less specific, such as:
Not all symptoms may be present at all or at once.
Anyone with symptoms is urged to see a doctor, especially if there is persistent fever, irritability, drowsiness or lethargy.
If symptoms worsen you should immediately seek help, even if you have already seen a doctor. In an emergency call triple-0.
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