In the wake of the preventable death of another baby, allegedly turned away from two hospitals and his symptoms dismissed as ‘teething’ – there is a growing campaign to make national a Queensland-only protocol that forces medical staff to pay attention to a mother’s intuition.
For any parent who has been faced with the horror of knowing something is wrong and no one listening it’s a campaign that makes sense.
Malakai Matui Paraone and Kyran Day both died in hospital after concerns from their parents were ignored. Image via Facebook.
Last week a mother and father lost their little boy. A big brother lost his mate. The family from Perth made the decision none of us want to be faced with, to turn off the life support of their son.
Their baby boy, Malakai Matui Paraone, just seven-months, died in Princess Margaret Hospital after allegedly being sent home from two hospitals and a GP, told to go home - dismissed - labelled as "teething".
But he wasn't teething, he was desperately ill and no one except his parents believed it.
His death, according to his parents Nicole Thompson and her partner, Keps Paraone was from misdiagnosed meningococcal.
“Three days I tried to get him help — three days, two hospitals, one doctor’s surgery, an ambulance trip,” Ms Thompson told Nine News.
“If they had done their job properly my son would still be here.”
Nicole Thompson and her partner, Keps Paraone with Malakai and their other son. Via Facebook.
While the clinical diagnosis for her son’s death will be determined by a coroners court the family say they blame the hospitals and doctors involved claiming they were "laughed at" and "dismissed" for asking questions.
Whether it was the fault of any hospital or doctors has not yet be determined, but still, sadly, we hear stories like this all too often.
We hear of babies dying from medical negligence, children suffering from delays in hospital, overcrowding, faulty equipment and inadequate treatment.
We hear of medical staff brushing aside parents who beg and plead that something just doesn’t add up.
Mother’s instinct, mother’s intuition, a gut feeling that something just isn’t right. And of course, while we call it “mother’s intuition” it’s not just mums, no its fathers, grandparents, carers, anyone who knows a child well enough to just have that feeling the sheer terror of knowing.
Something isn’t right, but no one will listen to you.
But if you are a parent in Queensland you have an option the rest of us don't get.
We hear of babies dying from medical negligence. Via IStock.
In Queensland 'Ryan’s Rule' allows people who don't think their health concerns are being taken seriously enough to call upon extra help.
After a 2011 coronial inquest into the death of three-year-old Ryan Sauders, from toxic shock, misdiagnosed as mumps 'Ryan’s Rule 'was initiated. It allows family to request a 'Ryan’s Rule' clinical review if they have concerns about a patient who isn’t improving.
It’s a rule that if it had been nationwide might have saved the life of six-month old Kyran Day.
Naomi Day, with her partner and Kyran. Via Kyran's Rule Facebook.
His case is heartbreakingly similar to that of Malakai Paraone except for the cause of death.
The six-month-old died after being misdiagnosed with gastroenteritis at Shoalhaven Hospital on the south coast of NSW in 2013 and ambulance delays saw him wait four hours for a transfer.
Three doctors told Kyran’s parents it was “just gastro” he died in Sydney Children's Hospital, with the cause of death listed as hypoxic ischaemic encephalopathy - a condition in which the brain does not receive enough oxygen.
Kyran’s parents told an inquest that they knew it wasn’t gastro, his grandmothers, both nurses, knew it wasn’t gastro and they all demanded more tests but the medical team ignored their pleas until 20 hours after he first saw a doctor.
But by then it was too late.
Weeks after Kyran died his treating nurse told his grandmother:
“I should have listened to you. I didn’t know why I didn’t, it keeps me awake at night.”
This morning Kyran Day’s mother Naomi, upon hearing of the death of Malakai, posted an angry Facebook plea that something be done.
“WHAT IS GOING ON!!!! I’m so sorry to the parents and family of Malakai and to you beautiful boy, this makes me just want to move a lot quicker!” she wrote.
She and her husband are campaigning for Kyran’s Rule to be nationwide.
They have started with their state, NSW and in an online petition they have asked for NSW to recognise what they call Kyran’s Rule as a consumer/family escalation process.
“We were in a situation where no one was listening to us when we were saying "something is seriously wrong". We want a consumer/family escalation process put in place so that if your concerned about the treatment or staff there is a process you can do that can help you get the rights answers” she writes on her petition.
The parents of Malakai speak about his tragic death. Post continues after video..
Making Ryan, or Kyran’s Rule nationwide is a way families can be listened to.
It’s not blaming the medical profession. It's asking them to be human because sometimes, not always, but sometimes parents really do know their child best.
If there was a law that could make the medical profession bloody well listen to you wouldn’t you support it?
You can. To access the petition for Kyran’s Law go here.