Hanaa Hassan and Dwayne Kramer should have celebrated their son Zayn’s second birthday this week.
Warning: This story contains details that may upset some readers.
Instead, they stood at their son’s grave and sang happy birthday, wiping away tears in the darkness.
Ms Hassan and Mr Cramer have visited Zane’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 how much their 23-month-old baby was receiving at Monash Children’s Hospital in the hours before he died.
The couple say they were left in intensive care with their son for more than six hours with what they claim was inadequate attention from staff and that their concerns about his swollen abdomen were dismissed.
Although the exact cause of Zane’s death remains under investigation, a large blood clot was found in his stomach in his final hours and a brain scan revealed severe damage.
“The health care system has failed us,” Mr. Cramer said.
“Every morning I wake up looking at the crib that is no longer in the room.
“For the first few seconds, you look around to see where your baby is, and when reality sets in, the weight is applied to your chest.”
Despite their grief, they want the story of their son’s death to raise broader questions about the state’s health care system.
“Zane deserved better,” Ms Hassan said.
“Too Little Done Too Late”
The cheerful baby spent the day of September 8 with his grandmother, but by the evening Zane began to wake up and then pass out in his father’s arms.
His parents called an ambulance and he was taken to Dandenong Hospital after being told there were no options at Monash Children’s Specialist Hospital.
Ms Hassan in Dandenong said staff acted with a sense of urgency and quickly transferred Zane to Monash.
Before he was transported, staff drilled into Zayn’s leg bone to urgently insert a drip after they struggled to find a vein.
“The fact that he barely responded and then barely responded to something so painful, I thought, ‘this is not normal,'” Ms Hassan said.
Before his transfer, Ms Hassan said she had also told doctors her son’s stomach had distended.
On arrival at Monash, Zaina’s mother said staff took blood samples and tested her for COVID. Around 10:00 p.m., Zane was admitted to the ICU.
From then until his heart stopped at about 4 a.m. the next morning, his parents say Zayn didn’t get the care he needed.
“There was no resuscitation in the intensive care unit,” Mr Kramer said.
During those six hours, Zayn’s parents say no scans were done, the doctor called for another vital signs monitor that never arrived and dismissed Ms Hassan’s growing concerns about the baby’s belly bulge.
“[The doctor] touched his stomach, said it was soft and that was it,” Ms Hassan said.
“I mentioned it to two separate doctors at two different hospitals.”
His parents say the staff never shared the blood test results or what they planned to do to treat their boy.
“I wasn’t really informed of what they were going to do to find out what was wrong with him,” Ms Hassan said.
“Regarding these blood test results, I have not received any notification of their results.”
Around 4 a.m., Zane’s breathing became irregular, and minutes later, he went into cardiac arrest.
Doctors performed cardiopulmonary resuscitation for about an hour.
“When the doctor pressed the air, you could see blood coming out of his mouth with each pressure, and then [the doctor] asked to start compressions,” Ms Hassan said.
“Then there were a lot of doctors, a lot of doctors started coming.”
Monash medical staff administered blood products, epinephrine and fluids as they resuscitated the 23-month-old.
Ms Hassan said a doctor once told her her son was “slipping away” and advised her to say goodbye.
“My biggest concern is that too little is done too late,” she said.
“Really, they should have come much earlier – much more proactively.
“We were in the hospital at the highest level they can provide – the intensive care unit – and those precious hours that passed brought us to the point of no return.”
A final farewell to “gentle, sensitive” Zayn
Monash Children’s Hospital arranged for Zayn to be transported to the Royal Children’s Hospital for further treatment and Ms Hassan was warned that her son could die during transport to the Royal Children’s Hospital.
She decided that he should go on a trip.
“At that moment, I completely lost faith in the health of Monash children. I wanted him to leave,” she said.
Zayn made it to the Royal Children’s Center and during a six-hour operation, while trying to restore blood flow to his abdomen, a large blood clot was found in his stomach.
“I knew his stomach wasn’t normal so it just confirmed everything I knew about my son, I should have pushed the doctor harder but I noted it and told the two doctors but I knew it wasn’t right.” said his mother. .
After the surgery, a CT scan showed that he had permanent brain damage.
The couple said goodbye to their “gentle, sensitive” baby boy, their only child, at 3:15 a.m. on September 10.
Monash Health was approached for a statement but declined to comment because the case had been reported to the coroner.
Health Minister Mary-Ann Thomas said the State Government would do “everything possible to provide Zane’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 – the loss of a child is a tragedy no family should have to go through,” she said.
Zane’s parents are speaking publicly about their child’s death because they believe “people need to know what’s going on in our health care systems.”
“The health minister needs to be aware of what’s going on and be accountable for what’s going on,” Ms Hassan said.
After Zane’s death, the couple have nightmares and can’t stop wondering if it could have been prevented.
“There are no words, there’s just an empty hole,” Mr Cramer said.
“It’s just amazing emptiness, silence.
“Even with family members supporting you, the silence is still deafening.”
On one of their daily visits to Zane’s grave, they ran into their parents Amrita Lanka, an eight-year-old girl who also died at Monash Children’s Hospital in April this year.
Amrita is buried near Zain.
While they spend their days dealing with their intense grief, Ms Hassan and Mr Cramer want to see action taken to improve Victoria’s health system so other families don’t suffer as they have.
In particular, they said that it is necessary to conduct an investigation into the fact of the death of children in hospitals.
“We need to see what we can do better,” Ms Hassan said.
“Every night I think about what happened and I think about how things went so wrong.”
“We live in a first world country, every single parent should be so furious that something like this could happen.”
A criminal investigation is underway into Zane’s death.
Meanwhile, Ms. Hassan and Mr. Kramer are trying to adjust to life without their son.
“Zaini was the most perfect child,” Ms Hassan said.
“I know a lot of people think their kids are perfect, but he had a way of making everyone feel so special.”
“You can’t imagine the emotions that go through a parent’s mind when they lose their child, when they bury their child,” Mr. Cramer said.
“This is what we’re going to live with forever now.”