Here is Jodi’s story.
It was another scorching hot summer’s day in central Queensland. I rush around our house yard connecting garden hoses to avoid sibling warfare ensuring all three of my tiny tots had a garden hose to play with. Little did I know that this fun family activity I created was possibly the beginning of the end of our baby boy’s life.
Our one-year-old boy, Lincoln Cash Keough, known as Cash to all who knew and loved him, recently died from Primary Amoebic Meningoencephalitis (PAM), a rare and severe disease caused by Naegleria fowleri.
So rare yet so real, Cash became the third child to die from this disease in the Winton region in the past 14 years.
Previously unaware of the existence of Naegleria fowleri, I have rapidly and tragically learnt about the nature of this extremely aggressive, brain-eating parasite, which stole the life of my son within five days of knowing he was sick.
Naegleria is found in warm, fresh water and in our case, it developed in our bore water supply at our homestead at Judith Royl Station, central to Richmond, Winton and Julia Creek. It is a free-living amoeba, which causes an infection of the brain and brain coverings. Even with treatment, nearly all people reported to have the Naegleria fowleri infection die. With 300 recorded cases worldwide and only eleven noted survivors, PAM has a staggering near 99 per cent mortality rate.
Each day of our living nightmare with PAM felt like a lifetime, but the reality is that the journey from Cash’s first symptom to his last breath was frighteningly quick.
Day one: Cash started vomiting in the early hours of the morning. I rang my mum and mother-in-law explaining the night we had, and by late morning I had decided to drive to Richmond hospital. This decision followed conversations with a doctor of the Mount Isa Royal Flying Doctor Service. His main concern was Cash’s hydration and my concern was his extreme sleepiness, and what I thought was a change in the look in his eye and engagement. I notified the hospital that I would be coming in, rushed around to pack an overnight bag, put cold parcels from the mail away, and continued to try and contact my husband Laine on the UHF radio. I waited for him to arrive home from putting out 1080 bait, to leave our daughters Kodi-Laine (4) and Bobbi (2 1/2) home with him, then quickly drove into town with my baby seemingly sleeping peacefully. I was not panicking, but was eager to reach the hospital.
3pm: Cash started having obvious seizures (perhaps these were not the first for the day) and I am stuck with a flat tyre just outside of town. With a lift from my husband Laine’s aunty we made it to the hospital speedily. The medical staff started treatment for suspected Meningitis. We were flown to Townsville that night. As the plane came into land my spirits lifted. I believed and hoped we were in the best place to get help. That doctors here would be able to treat – and fix – my son. But the nightmare had just begun.
Day two: Cash was put in an induced coma and the treatment for Meningitis continued. But confusingly he wasn’t responding to this treatment. Doctors in the Paediatric Intensive Care Unit (PICU) said they needed to do a lumbar puncture to test the fluid taken from the spine and determine which bug Cash really had. They feared he wasn’t well enough for the procedure to take place without putting him at greater risk, so the diagnosis was delayed further. The prognosis was not going to be good news though as a CT scan showed swelling in his brain.
Day three: Cash had a stent placed in his brain to release pressure and the doctors were then able to take fluid they needed to send to the laboratory. Under the microscope they discovered the amoeba. At this point Cash was diagnosed with PAM and his treatment was changed to combat the disease.
Our spirits lifted as we were told we had a diagnosis, until paediatric intensivist Doctor Greg Wiseman clearly stated that the mortality rate was near to 100pc and his chance of survival was unlikely. We hoped for a miracle. Not with the expectation that he would come out the way he was, but that we could just take our son home whether he was brain damaged, blind, deaf, physically or intellectually impaired. Provided he would enjoy some quality of life, we just wanted to take our baby boy home.
Day four: We were told that our son would most certainly die. No words can fairly describe that moment. Our hope for a miracle had been stripped away. Our reality was one of tragedy and complete heartbreak.
Day five: It was confirmed what I had failed to accept as a probability; our son was brain dead… our son had died… I would not be taking my baby home. To save the life of another small child we agreed to organ donation. After making that emotional decision and keeping Cash on life support, in the middle of the night we were heart broken further as we were told that the small child whom Cash was donating his liver to had deteriorated.
Day six: With his heart still beating I held my baby in my arms for the last time. The life support was turned off and we had to try and accept that we had lost the battle to Naegleria fowleri.
Recalling how and when Cash appeared sick, in hindsight his first symptom may have been present the evening before he started vomiting. I recall he had a runny nose and a slight temperature, which lined up with his teething symptoms and also what I thought was the onset of a cold. It’s very easy to blame myself as a mother for not knowing my own child was sick… and not knowing that such a disease existed. Even when I arrived in Emergency I thought we were just on a rough road and that I would be taking my baby boy home... children aren't meant to die.
According to the medical staff at the Townsville General Hospital who worked by Cash’s bedside and to the Director of the North Queensland Public Health unit, Steven Donohue, we were quite frankly “extremely unlucky”. There are now about 30 known cases recorded in Australia.
This rare disease was first recognised in Adelaide in 1960s. Since its discovery, Naegleria fowleri has been detected in over 15 countries in Asia, Europe, and North and South America. It is most commonly found in warm freshwater supplies in people’s homes, in rivers and lakes, and in unchlorinated swimming pools. It is not found in water within the artesian basin until it surfaces and rests with a temperature of between 25°c and 40°c. Any body of water that seasonally exceeds 30°c, or continually exceeds 25°c can support the growth. Naegleria can also be found in the soil where it exists as cysts. In this form, it is not dangerous, but can readily turn into free-living amoebae when it comes in contact with water. While there are several species of Naegleria, Naegleria fowleri is the only species that has shown to cause disease in humans.
People cannot be infected by drinking, cooking, or washing clothes with water containing the amoeba. Naegleria can only infect a person when water containing the amoebae forcibly enters the nose, and passes through the nasal ‘barrier’ into the brain. Here it infects and destroys brain tissue, causing death within days. Studies suggest that PAM is rare because it requires a large number of factors to line up in order for someone to contract the disease. These include large numbers of amoeba in water, extremes of age (the very young are most susceptible), and altered conditions in the nose. In the US, half of the documented cases of Naegleria are children aged 12 years and younger, and a large portion of those infected, are boys. Most recorded cases have occurred in the hottest time of the year. Cash’s death also followed a hot summer. Unfortunately for us, all things happened to line up to create the perfect storm.
There has been a cluster of deaths in the past, in South Australia’s Pt Augusta, Pt Pirie and Kardina/Paskeville regionas. Now we question if the Winton region actually has a higher density of this amoeba or a more aggressive strain. We are certain from the water report undertaken by the public health unit, that there is a large density of Naegleria fowleri at our home and it is now recognized that we are in potential cluster, which is definitely a concern for those of us living in this region.
We are not the first rural Queensland family to experience such tragedy, such heartache. Tina and Gerald Elliot of Wirilla Station, around 100km from Judith Royl tragically lost their 19-month-old daughter Belle to PAM in 2009. Gerald had already lost a son with his wife Margie to a similar disease eight years earlier. It was only after Belle had died, that her half-brother’s likely diagnosis was made.
Frighteningly the number of lives lost could be much higher. In many cases, death occurs before diagnosis. Many of the symptoms would be difficult or impossible to describe by a younger child. With Cash being so young his first concerning symptom was vomiting. Other symptoms of PAM include high fever, severe and persistent headache, neck stiffness, confusion, hallucinations, sleepiness, sore throat, nausea, disturbances of taste and smell, and seizures. These symptoms often develop within three to seven days of contracting the disease, and most people die within 10 days of the onset of symptoms.
It seems near to impossible to beat this disease due to the need for immediate diagnosis from the first onset of symptoms followed by the availability of all drugs necessary to combat the disease. Leaving aside a small town like Richmond or Winton, Australia does not have ‘all’ the key drugs, which have been used is in some of the successful treatment of the few survivors there are.
But while rapid diagnosis and treatment of PAM may increase the likelihood of survival, prevention of Naegleria exposure is paramount.
Unfortunately there is no effective means of controlling naturally occurring Naegleria fowleri levels in rivers, dams and lakes, thus making prevention difficult in many cases. Personal prevention should focus on limiting the amount of water going up the nose while swimming. This may be done by keeping your head above water if swimming or bathing in untreated warm freshwater, holding your nose if jumping into the water, keeping hoses away from your nose, running the tap before use, disinfecting your swimming pool correctly (with chlorine or salt), and emptying and cleaning small pools.
The good news is that it is possible for regional people to treat their home freshwater supply to minimise the risk of PAM and other freshwater-borne diseases. Amoeba cannot live in salty water where the salt content is more than 0.7pc (7g/ L). We also know that chlorine kills Naegleria fowleri and is the most effective way of treating swimming pools and reticulated water supplies. A process called chloramination is a practical method for people in the bush to control the levels of Naegleria in their water. Filtration and UV treatment systems are also effective.
We were recommended a combination system of filtration, chlorination and UV light because of the large concentration of Naegleria fowleri in our house tap water sample. We have implemented a filtration system combined with UV light and will replace all our garden hoses. In the future we hope to have a bore at the home so we can pump directly to the home tank.
We will never know exactly how our precious little boy was infected. Perhaps it was playing with the garden hose; combining the factors of Naegleria in the warm tap water and the pressure of the hose. It is a likely possibility… yet it’s only an assumption. Cash, like most country kids had previously played in dog water bowls, the water in the chook pen, cleaned troughs with dad and bathed regularly with his sisters in untreated fresh water.
I believe if we had known of the risks of PAM we would have done things differently. As grateful as we are for thorough medical service we received in our local hospital and the Townsville PICU, perhaps if all medical professionals involved in our journey were aware of PAM they may have done things differently. Awareness amongst the public and amongst medical professionals is what we hope to achieve. The awareness that could have saved Cash’s life and what we believe will certainly save others.
We accept that once infection has occurred all the prompt medical help and best treatments still make it an extremely tough disease to beat. Prevention is paramount.
Laine and I are fortunate to have the support of the media, Queensland Health and a team of friends and family as we begin the Lincoln Cash Fresh Water For Life Awareness Campaign. We have started initially with an informative website to improve awareness of the disease. For Laine and I it will be a life long venture working to prevent another family from having to endure our heartache.
Our son is irreplaceable; but somehow with the emptiness we carry, we need to keep on living. We hope not to frighten people by the hand we’ve been dealt, but empower others to prevent our living nightmare becoming their reality.
May our story be one that you only read about.