Naomi and Grant Day lost their six-month-old son, Kyran after a hospital misdiagnosis led to his tragic, preventable death from intussusception – a bowel obstruction.
Despite the original medical diagnosis of gastro, Kyran's parents knew that there was more going on. Kyran's grandmothers, both nurses, also knew that it wasn't gastro making sweet little Kyran unwell.
However their desperate pleas went unheard, and because of that, Kyran's intussusception was not discovered until 20 hours after he first saw a doctor. And by then it was too late.
It's been five years since his senseless death, during which time Naomi and Grant have been campaigning relentlessly, working with NSW's Clinical Excellence Commission to re-vamp the REACH escalation program, which is an escalation process that allows anyone who is concerned about a loved one to raise their hand and be the voice for their loved one.
Their goal is for Kyran's death not to have been in vain so that no other family has to live the horror they've endured since 2013.
We call it a 'mother's instinct' or 'mother's intuition' – it's that feeling in your gut that something is not right with your child. Of course, it's not limited to mothers - fathers, grandparents, siblings, carers – really anyone who is close enough to know that horror feeling where you just know.
It's not a myth. It's powerful. And when it's ignored it can be disastrous.
When her normally bubbly six-month-old son woke from a 12 hour sleep groggy and uninterested in food, Naomi knew that something was wrong.
"I just thought, this is not right," says Naomi. After calling her mother and mother-in-law – both nurses – for their opinion, Naomi and Grant took Kyran into the Shoalhaven hospital emergency department to have him assessed.
Kyran was triaged with a suspected gastro bug, and was then transferred the ward where a treatment plan of rest and fluids was put in place.
Naomi and Grant knew this was more than a bug, pleading for more tests, but their pleas went unheard. Grant's mother came to see them and agreed that there was something seriously wrong with her pale, limp grandson, even asking the attending nurse if this could possibly be intussusception.
As their son faded, Grant and Naomi knew that this was a situation that needed to be escalated … but it wasn't.
In fact it was 20 hours later, after numerous pleas from his desperate family that Kyran finally had the ultrasound that identified the potentially fatal intussusception.
It was four hours before Kyran was able to be transferred to Sydney to receive the care he needed. One full day after his family first sought medical help, Kyran finally made it to to Sydney Children's Hospital for specialist surgery but by then he had suffered several cardiac arrests. The bowel operation was a success but, tragically, the earlier cardiac arrests had caused a lack of oxygen to Kyran's brain and he was placed on life support.
The memory of holding their son as the machines were finally turned off is the driving force behind Naomi and Grant's determination to make sure that no other family is denied appropriate medical care because their intuition was ignored.
Had Kyran been in a Queensland hospital, his family could have invoked' Ryan's Rule' - a Queensland-only health protocol that allows people who don't believe their health concerns are being taken seriously to have their case escalated. Queensland parents can activate Ryan's Rule by phoning 13 432 584 if (13 HEALTH) if they wish to escalate their children's care.
Ryan's rule came into effect after a colonial inquest after the death of two-year-old Ryan Saunders. Ryan died 30 hours after presenting to hospital where a bacterial infection was misdiagnosed as a case of mumps. Despite his parents protests that something serious was wrong, Ryan did not get the treatment he needed and tragically lost his life as a result of toxic shock.
Naomi and Grant are determined that all Australian families have this right. In addition to working with NSW's Clinical Excellence Commission to re-vamp the current REACH escalation program have also been invited to be on the planning panel for the New Tweed Valley Hospital.
"We have also created a REACH poster specifically for pediatrics which is situated in Childrens wards," says Naomi of the poster which features Kyran and his story.
"We are in the process of having this poster situated in emergency, maternity, and pre-natal department in NSW."
An inquest into Kyran's death found "unquestionably inadequate" management of his care.
"The bottom line is that children and babies don't have a voice. Kyran couldn't say to me "Mum, there is something seriously wrong." I had to be the voice for him,and I was ignored," said Naomi.
"I want all parents, grandparents and everyone to be able to feel comfortable in saying there is something wrong, knowing that they will be listened to."