'No one told me about meningococcal'

Pinterest, a popular digital platform, recently restricted vaccine search results. Source: AAP

With so many strains of meningococcal and various different vaccines, one unfunded, it's no wonder the disease is still ravaging our children.

"Should we see a doctor?" It's a dilemma every parent grapples with from time to time when their child runs a fever and seems lethargic.

Elisha Robinson played with the same thought when her seven-month-old baby Lilliana became hot and limp during a family holiday to Thailand in November 2018.

When Lilli's fingernails and lips started to turn blue, and then her organs did the same beneath her thin, white skin, Elisha knew she needed help.

"I could tell she was't getting enough oxygen through to her body. She was basically going into shock and her temperature was so high and we couldn't bring it down. She was starting to have convulsions," says Elisha.

When the local ambulance personnel couldn't grasp her frantic English, Elisha collapsed in the street, screaming. "I didn't know what was happening, I just wanted someone to help me."

The family rushed Lilli to hospital in Phuket, where she was fed an antibiotic drip while her small body swelled up and developed a purple rash. After a couple of days, the family were told meningococcal disease - strain B - was poisoning their daughter's body.

After 10 days in Phuket, LIlli was medevaced to a hospital in Bangkok.

For weeks Elisha, 23, and her husband Jai, 24, from the Gold Coast, had no idea if their little girl would have permanent damage to her organs or brain, or whether or not she would lose her hands or legs, which had turned black.

Lilli's heart rate skyrocketed to the point where cardiac arrest was a real danger, pneumonia started to claim her left lung and her veins started to collapse, which meant her drip line had to be fed through her groin.

"The doctors told us she had a 30 per cent chance of survival," says Elisha. "We were living a nightmare."

Thankfully, Lilli improved, thanks to plasma and antibiotics fed into her tiny body from 12 different bags. She returned to Australia around three weeks later but continued to exist amid a medical circus of feeding tubes, pressure garments, splints, surgeries and skin grafts.

With up to a 10-day incubation period, Elisha says she has no idea where Lilli picked up the disease, but now their family understands how rapid and serious meningococcal is, they are keen to raise awareness and encourage parents to vaccinate their children against the disease.

Meningococcal is a bacterial infection of the blood and/or membranes that line the spinal cord. It is rare and while most people survive, around one-in-ten of those affected may die and one-in-five may suffer serious long-term disabilities, including brain damage, deafness, scarring or loss of limbs, due to an inflammation of blood vessels that can cut off blood supply.

The disease is spread via close contact such as coughing or kissing, which seems to make babies and toddlers and then teenagers most likely to catch the disease.

Despite its severity, the majority of Australian children may not be fully protected. This is partly because there are different vaccines for different strains and not all are publicly funded.

While a meningococcal vaccine for strain C has been on the National Immunisation Program (NIP) since 2003 (and has been hugely effective in minimising the C strain in Australia), a combination meningococcal vaccine for strains A, C, W, Y only came out in 2018.

It is given to babies at 12 months and will soon be given to adolescents in schools. This means that many children are today only protected against the C strain.

A separate vaccine for B, which ravaged baby Lilli's body, is only available in Australia via private prescription (apart from in South Australia, where it is state-funded). It remains highly expensive - around $135 per dose, with two or three doses required.

It remains unclear whether other states will fund the meningococcal B vaccine, and whether the federal government will eventually approve it for the NIP. Immunology experts have been putting the pressure on for quite some time.

Professor Terry Nolan, Head of Melbourne School of Population Health at the University of Melbourne and Head of Vaccines Immunisation Research Group (VIRGO) at Murdoch Children's Research Institute, points to the UK, where the B vaccine has been publicly funded since 2017 and where there has already been a significant reduction in the disease.

"The fact that we have a vaccine for strain B and we know that it works, and the fact that the Australian government is not funding it, is unconscionable and outrageous," he says.

With strains W, Y and B on the rise, Prof Nolan encourages parents to give their children the combination vaccine if they haven't already had it, and also to fork out on the vaccine against strain B.

"For a baby, the life-long consequence of losing a limb, or brain damage compared to the cost of getting the vaccine is tiny. There's no question that if people do not get this vaccination for their children, in adolescence some of them will get it and some of them will die."

Lilli, in some ways, is lucky. Now a 10-month-old, her brain remains unaffected and her organs are healthy.

But she has a lot of scarring to her legs and arms, and must endure ongoing surgeries and skin grafts and painful physiotherapy.

Her parents Elisha and Jai, while grateful she has kept both her legs, remain unsure how the bones in her right leg will grow.

The emotional scars, meanwhile, may never heal.

"What I've seen my daughter go through has broken me as a mother, to witness my child suffer so much as such a little baby," says Elisha.

"I had no idea I could have vaccinated her against this before she was 12 months, I didn't know how many strains of the disease there were.

"No one told me about meningococcal."

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