The mother of Dapto man Leo Lagana, who died in hospital last month after multiple aneurysms, says she believes her son may still be alive if he had access to treatment at Sydney Children's Hospital.
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Leo had a rare form of dwarfism, Majeski microcephalic osteosplastic primordial type two, which meant he was the size of a toddler at 22-years-old.
In the lead up to his death, Leo spent a significant time in and out of Wollongong Hospital receiving treatment.
When his condition worsened and it was clear he would need surgery in late January, his mother Pauline Lagana said the family and his long-time doctors hoped he would be able to be treated in Sydney Children's Hospital.
However, when his surgeon asked that he be sent there, he was refused because of his age, Ms Lagana said.
She said the family was told their age cut off was 16, and he was transferred to the neighbouring Prince of Wales hospital and treated in an adult ward.
Ms Lagana said the nurses and other medical staff had been "great", loving and caring, but did not always seem to have the equipment or procedures in place to best treat Leo.
She also said finding a children's anaesthetist needed for his operation was difficult.
"When we first got there, they wanted to do a blood transfusion because his platelets were low, so to give him a fighting chance in his operation he needed a transfusion," she said.
"The nurse said she didn't know what to do because she said 'Leo is a child, I've got to ring the children's hospital before I start this' because the calculations for a blood transfusion for someone of Leo's size would be for a child not an adult."
"The next day we had another nurse who said 'I don't know what your son is doing here'," she said, as they did not have the right dosage of basic pain medicines.
"We couldn't even get Panadol for him, they had to cut a Panadol in half. And I was really concerned about his blood pressure - because he always [had a bleed] when it got to 160 - but they were looking at the blood pressure for an adult not for a tiny child like Leo."
She said Leo became distressed when he had a brain bleed which left him in pain and unable to see out of his left eye.
"He said mum I can't take much more of this, I'm going to die," she said.
"He's going 'goodnight mum, goodnight mum, he just kept saying goodnight'."
At one point, when Leo was having multiple seizures, she said a nurse had to run next door to the connecting children's hospital to grab equipment used to treat children in cardiac arrest.
"They didn't have this Koala pack that they needed, so one of the nurses ran, literally ran because the hospital is connected by a bridge to get this Koala pack that they use for children in cardiac arrest," Ms Lagana said.
She said Leo eventually died after an emergency operation to try and remove the some of the pressure from the bleeding on his brain.
While the family has always acknowledged that Leo's disability meant his life expectancy was short, Ms Lagana believes he may have lived longer if he was in a hospital that matched his size.
"If they'd been able to operate before Leo had the seizures, they may have been able to save him," she said.
"When we were in the children's hospital in 2017, they operated within 12 hours and Leo was fine."
NSW Health acknowledged the concerns raised by Leo's parents and said it was reviewing the care provided to him before his death.
A spokesperson extended condolences to his loved ones and explained that the Randwick hospitals campus worked together to provide care to patients.
"SCHN cares for babies, children and young people from zero to 16 years of age, or 18 years of age for patients with existing chronic health conditions," they said.
"As a young person approaches the age of 18, SCHN supports them to transition to appropriate adult health care services for ongoing care.
"The Randwick hospitals' campus is highly integrated with shared services supporting both adult and paediatric patients. Prince of Wales and Sydney Children's Hospital work together when required to provide care for patients.
"NSW Health policies ensure that care is provided in ways that are inclusive, person-centred and accessible for people with disability.
"This includes ensuring that reasonable adjustments are available for people, such as access to paediatric supplies, and ensuring that staff are equipped with the necessary resources to deliver effective, timely and quality healthcare to everyone."
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Kate McIlwain
For more than a decade, I've helped the Illawarra Mercury set the news agenda across the region. Currently I'm the paper's health reporter - covering the stories of Illawarra workers and residents in the wake of a global pandemic and at a time where our health systems are stretched to the limit.
For more than a decade, I've helped the Illawarra Mercury set the news agenda across the region. Currently I'm the paper's health reporter - covering the stories of Illawarra workers and residents in the wake of a global pandemic and at a time where our health systems are stretched to the limit.
