Hanaa Hassan and Dwayne Cramer should have been celebrating their baby boy Zayne's second birthday this week.
Warning: This story contains details that some readers may find distressing.
Instead, they stood at their son's grave and sang happy birthday wiping away tears in the dark.
Ms Hassan and Mr Cramer have visited Zayne's grave every day since he died in a Victorian hospital last month.
The past few weeks have been marked by grief and anger as they question the care their 23-month-old received at Monash Children's Hospital in the hours before his death.
The couple say they were left in ICU with their son for more than six hours with what they allege was inadequate attention from staff and that their concerns about his swollen stomach were dismissed.
Although the exact cause of Zayne's death remains under investigation, in his final hours a large blood clot was discovered in his stomach, and a brain scan showed severe damage.
"The health system failed us," Mr Cramer said.
"I wake up every morning looking to a cot that's no longer in the room.
"For that first few seconds you're looking around to see where your child is and when the reality sets in, that's when the weight applies to your chest."
Despite their heartbreak, they want the story of their son's death to prompt broader questions about the state's health system.
"Zayne deserved better," Ms Hassan said.
'Too little was done too late'
The bubbly toddler spent the day of September 8 with his grandma, but by the evening Zayne began slipping in and out of consciousness in his father's arms.
His parents called an ambulance and he was taken to Dandenong Hospital after they were told the specialist Monash Children's Hospital did not have capacity.
At Dandenong, Ms Hassan said staff acted with a sense of urgency and moved quickly to have Zayne transferred to Monash.
Before he was transferred, staff drilled into Zayne's leg bone to urgently administer an IV after struggling to find a vein.
"The fact that he barely reacted, and then barely reacted to something so painful, I was like 'that's not normal'," Ms Hassan said.
Before his transfer, Ms Hassan said she also raised with a doctor that her son's stomach appeared distended.
Upon arrival at Monash, Zayne's mother said staff took blood samples and did a COVID test. Zayne was brought into intensive care at about 10pm.
Between then and the time his heart stopped at about 4am the next morning, his parents allege Zayne did not receive the care he needed.
"There was no intensive care in the intensive care unit," Mr Cramer said.
During those six hours, Zayne's parents say no scans were done, a doctor called for a different vitals monitor which never arrived, and dismissed Ms Hassan's growing concerns about a bulge on the toddler's stomach.
"[The doctor] touched his tummy, said 'it's soft' and that was it," Ms Hassan said.
"I flagged it to two separate doctors at two separate hospitals."
His parents say at no point did staff relay the blood test results or what staff were planning on doing to treat their baby boy.
"I wasn't actually informed of what they were going to do to find out what was wrong with him," Ms Hassan said
"As for those blood test results, I received no communication as to the results of them."
About 4am Zayne's breathing became abnormal and within minutes he went into cardiac arrest.
Doctors performed CPR for about an hour.
"When the doctor was pushing air you could see the blood pouring out of his mouth with every push, and then [the doctor] asked to start compressions," Ms Hassan said.
"There was lots of doctors then, lots of doctors started coming."
Monash medical staff administered blood products, adrenaline and fluids as they resuscitated the 23-month-old.
At one point, Ms Hassan said a doctor told her her son was "slipping away" and advised her to say goodbye.
"My biggest concerns are that too little was done too late," she said.
"Really, they needed to be getting in a lot earlier – a lot more proactive.
"We were in the highest level of care in a hospital that they can provide — an ICU unit — and those precious hours that passed got us to the point of no return".
Final goodbye to 'gentle, sensitive' Zayne
Monash Children's Hospital organised for Zayne to be transported to Royal Children's Hospital for further treatment, and Ms Hassan was warned that her son could die in transit to the Royal Children's Hospital.
She decided he should make the journey.
"At that point I had lost complete faith in Monash Children's Health. I wanted him out of there," she said.
Zayne made it to the Royal Children's, and during a six-hour surgery attempting to repair bleeds in his abdomen, a large blood clot was found in his stomach.
"I knew his belly wasn't normal so it just confirms everything I knew about my son, I should have pushed the doctor harder but I flagged it and I told two doctors, but I knew it wasn't right," his mother said.
After the surgery, a CT scan revealed he had irreversible brain damage.
The couple said a final goodbye to their "gentle, sensitive" boy, their only child, at 3:15am on September 10.
Monash Health was contacted for a statement, but declined to comment due to the case being reported to the coroner.
Health Minister Mary-Anne Thomas said the state government would do "everything we can to provide Zayne's family with the support they need at this incredibly difficult time".
"My thoughts and deepest sympathies are with the family at this tragic time – losing a child is a tragedy no family should have to endure," she said.
Premier Daniel Andrews said an investigation was already underway in relation to Zayne's death but said it would be inappropriate to comment further.
"Of course we send our sympathies and our best wishes to the family, and I assure them there will be a thorough investigation," he said.
Shadow Health Minister Georgie Crozier said if the opposition was elected in November, it would "make it a priority to have an independent investigation as to why these children are dying".
"Not just this little baby that has died … but the other children that have also died in recent months," she said.
Zayne's parents are publicly sharing the death of their child because they believe "people need to know what's happening in our health care systems".
"The health minister needs to be aware of what's happening and also answer for what's happening," Ms Hassan said.
Grief-stricken parents connect
Since Zayne's death, the pair have been experiencing nightmares and can't stop questioning whether it could have been prevented.
"There's no words, there's just a blank hole," Mr Cramer said.
"It's amazing just the emptiness, the silence.
"Even when you've got family members over to support you, the silence is still deafening."
On one of their daily visits to Zayne's grave, they came across the parents of Amrita Lanka, an eight-year-old girl who also died at Monash Children's Hospital in April this year.
Amrita is buried close to Zayne.
As they spend their days grappling with their intense grief, Ms Hassan and Mr Cramer want to see action to improve Victoria's health system to prevent other families suffering as they have.
In particular, they said an inquiry into the deaths of children in hospitals should be held.
"We need to be looking at what could we be doing better," Ms Hassan said.
"Every night I think about what happened and I think about how did everything go so wrong."
"We live in a first world country, every single parent should be so furious that something like this could happen."
A coronial investigation into Zayne's death is underway.
In the meantime, Ms Hassan and Mr Cramer are trying to adjust to life without their son.
"Zaney was the most perfect child," Ms Hassan said.
"I know lots of people think their children are perfect, but he had a way of making everyone feel so special."
"You can't imagine the emotion that goes through a parent's mind when they lose their child, when they bury their child," Mr Cramer said.
"That's something we will live with forever now."
