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Meningococcal W: Parents plead for action on deadly disease that struck their toddler son

ABC Health logoABC Health 30/04/2017

Video provided by ABC News (AU)

The parents of a Tasmanian toddler who recently contracted the deadly meningococcal W disease are sickened their son could have been immunised but they did not realise a vaccination existed.

Carly and Nathan Long from Launceston in northern Tasmania are sharing their story in the hope of raising awareness about meningococcal and the increasing W strain.

Their two-year-old son Arthur contracted the disease on February 26 this year, waking that Saturday morning with cold and flu-like symptoms.

"He was just a bit clingy and grizzly, as a normal toddler would be if they were getting a bit of a flu," Mrs Long said.

The Longs arranged for a GP to visit their house and were advised the toddler was getting a virus.

But Arthur continued to deteriorate and later in the evening the parents called Launceston General Hospital seeking further advice.

"I gave them his symptoms, which were, 'Look, he's quite lethargic and limp'.

"They kept asking if his lips were blue or if he had a rash.

"He didn't really — if anything his lips were pale but they said, 'Yes, you need to go to the hospital straight away'."

It was not until Arthur arrived at the hospital that the tell-tale rash appeared.

The bacterial infection 'meningococcal W' was spreading throughout his body, causing his vital organs to shut down.

Staff began arranging a transfer to the Royal Children's Hospital in Melbourne.

"Doctor Chris, I think it was, who was transporting him to Melbourne said he couldn't guarantee that he's going to be able to get him to Melbourne alive," Mr Long said.

"I don't know how to explain it — we didn't think we were going to have Arthur."

<p>Arthur Long's parents were gutted to learn a vaccine for meningococcal W was available.</p> © Provided by ABC Health

Arthur Long's parents were gutted to learn a vaccine for meningococcal W was available.

Arthur on life support for ten days

In Melbourne, surgeons operated immediately to relieve pressure on the boy's legs.

Arthur Long was on life support for 10 days and in intensive care for two weeks.

He will be left with permanent disabilities — in a few weeks, the two-year-old's feet will be amputated and his hands are also damaged.

While relieved Arthur was saved, the Longs were gutted to learn a vaccine could have prevented their family's ordeal.

"To find out Arthur had meningococcal we were kind of in disbelief really, and then to find out later after we came here that he could have been immunised against it, was sickening really." Mr Long said.

The Longs believe immunisation against the W strain should be on the national immunisation schedule and, at the very least, be better advertised.

"I'd love to see it added to the national program — I'd hate to see this happen to anyone else," Mrs Long said.

"At minimum, every time you take your child to get vaccinated you should be told these vaccinations are available."

'We would have got the vaccine in a heartbeat'

There are five main strains of meningococcal disease: A, B, C, W and Y.

Arthur Long was immunised against meningococcal C at 12 months, a free vaccine to all children as part of the National Immunisation Program.

Tasmania's Acting Director of Public Health Dr Mark Veitch said there were vaccines available against the increasing meningococcal W, as well as A, B and Y, but they are not subsidised.

"Families can choose to go and purchase vaccines through their general practitioner, it's not always possible to get the vaccine as there is a bit of a squeeze on vaccine supply," he said.

They cost around $100.

Mrs Long said she was under the misconception Arthur was immunised against everything.

"I had no idea that there were additional vaccines against this type of meningococcal that aren't on the national schedule that you can pay for and had we ever been offered that we would have got them in a heartbeat," she said.

'W strain is now the most common'

There have been five cases of meningococcal in Tasmania this year, 44 over the past 10 years.

Dr Veitch said most of the recent cases have been the W strain.

"Meningococcal W used to be fairly uncommon in Australia but it's actually the most common strain that's currently circulating, circulating across Australia and in Tasmania," he said.

It has a higher death rate than the other strains — around 10 per cent.

Of the 262 cases of meningococcal disease in Australia, last year 48 to 50 per cent were cases of the W strain.

Dr Veitch said the National Immunisation Program was a complex set of arrangements.

"It's based very much on the evidence that a vaccine is needed to prevent infection in particular age groups, and it also takes into account the cost-effectiveness of investing in a vaccine," he said.

Dr Veitch said there was a number of working groups currently looking to determine the best strategy.

But Carly and Nathan Long are just grateful their son survived.

"He's doing great, he really is and in terms of what could have and very nearly did happen to Arthur, we're very lucky," Mrs Long said.

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