In a remote Indigenous community of 3,000 people, researchers have discovered the highest known rates of rheumatic heart disease in the world, where children as young as four have died from the entirely preventable condition.
A study by the Menzies School of Health Research screened about 450 school age children in Maningrida, and the preliminary results reveal one in 20 suffered from rheumatic heart disease.
At least two of those were immediately rushed to hospital in Melbourne for life-saving open heart surgery, the study's lead author Josh Francis said.
"They've both had successful operations now but they will need to continue on penicillin injections every four weeks for the rest of their lives," Dr Francis said.
"We found them … at a point where things were critical and actually without that lifesaving cardiac surgery, their lives were at imminent risk."
There are fears for about 400 other children in the community who were not part of the study.
The Northern Territory's only paediatric cardiologist, Bo Remenyi, said up to 100 Indigenous children with rheumatic heart disease die each year in Australia.
"Children with severe rheumatic heart disease usually die suddenly and unexpectedly," Dr Remenyi said.
"We know children as young as four years of age have passed away from rheumatic heart disease in this community [Maningrida]."
The condition is caused by continuous, or repeated, exposure to a common, school-age infection on the skin or throat, which can lead to rheumatic heart disease if left untreated.
The contagious infection spreads easily in a place like Maningrida, where many children live in poverty and overcrowded housing, Dr Remenyi said.
"The housing situation in Maningrida atrocious," she said.
"The total number of houses available for the local Indigenous people are very limited and a lot of people still live in tents on back of balconies.
"The average number of people in a two-bedroom house is 15 … without access to proper hygiene like washing machines, taps working, you can imagine how this infection spreads like wildfire."Community response boosts prevention measures
The community are now doing what they can to reduce rates.
Chelsea Ryan, 20, is the receptionist at the Maningrida Health Centre.
She has also been trained to use a hand-held ultrasound device called a V-scanner to detect rheumatic heart disease.
"I wanted to make a difference in Maningrida," she said.
"I'd like to do more of the heart scanning and do more study, and hopefully be a cardiologist in the future."
Ms Ryan is one of a handful of local people in the community Dr Francis has trained to help identify early symptoms of the disease, and get children onto life-saving penicillin treatment to stop the progression of the disease.
"The V-scanners are incredibly portable, you can pop in your pocket, take them into a house, take them into schools as we've done, take them out to remote outstations," Dr Francis said.
Work is also underway at the local school, where ways to prevent the infection, the role of penicillin and the use of bush medicine and western medicine are being explained in local Indigenous languages.
Teacher Joseph Diddo speaks multiple languages and teaches in Gurr-goni.
"Now the people in the community and the kids understand because we're translating things," Mr Diddo said.
"So if kids have a problem they go straight away to the clinic. It's working."
Dr Francis said: "To grasp the concepts of rheumatic heart disease and to mount what is effectively a community response — school, clinic, community — all working together, to tackle this is our best chance of making a difference."
It's hoped a similar community approach could be replicated in other high risk communities around Australia.'Political will needed to put disease in history books'
Dr Remenyi said there was very little awareness about the scourge of a "third world disease in a first world country".
"If a child was to die in Canberra from rheumatic heart disease, that would be on the front page of every single newspaper and it would be on the television," she said.
"Yet there appears to be a tolerance for young Indigenous children to get their chest cut open as a result of a simple skin infection.
"And yet our politicians in Canberra seem to be doing very little about it."
Dr Remenyi, the Northern Territory's Australian of the year, wants new Prime Minister Scott Morrison to see first-hand the scourge of rheumatic heart disease in Maningrida.
"The medical problem around rheumatic heart disease was solved decades ago and what we have at the moment a political problem," she said.
"All we need is political will to put this disease in the history books."