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A devastated mother whose son suffered a rare form of dwarfism and died of multiple aneurysms says he would still be alive if he was not denied treatment at a children’s hospital.
Leo Lagana, 22, was the size of a toddler due to his condition and his mother, Pauline, says he was a child both physically and intellectually.
On January 19, Leo had an extremely high heart rate and Ms Lagana called an ambulance which took him to Wollongong Hospital, south of Sydney.
He was scheduled to be transferred to Sydney Children’s Hospital the next day for surgery, but Lagana claims that the hospital board decided that Leo could not receive treatment there due to his age, with a limit of 16 years.
Instead, Leo was taken to the adjacent Prince of Wales Hospital in Randwick, but Lagana claims the nurses weren’t sure how to care for a person his size.
She said finding an anesthetist was also difficult, and with her surgery delayed, her son suffered aneurysms and seizures.
He finally entered emergency surgery on January 22, but could not be saved.
Leo Lagana died on January 22. His family says he should have been treated at a children’s hospital but was denied because he was 22 years old.
Ms Lagana and her family are now furious that Leo was not treated at a center that had the right equipment for the size of their 93cm tall son.
“If he had been operated on before he had the seizures I think he might have survived,” he told Daily Mail Australia.
Lagana said her family had no animosity towards the Prince of Wales’s medical staff, but said the nurses seemed out of their depth in treating Leo.
“When we arrived at the Prince of Wales, Leo needed a blood transfusion and the nurse told me, ‘I don’t know what to do with him,’ because he was a child, not an adult,” Lagana said. saying.
Leo’s mother, Pauline, and her family are now furious. Leo (both in the photo) was not treated in a center that had the right equipment for a person his size.
She said the nurse had to ask the Children’s Hospital for advice on the correct dosage for Leo’s medication, even having to cut a Panadol tablet in half for him.
‘Nurses would come and complain to me, saying things like ‘What is he doing here? We don’t know how to deal with someone his size,” Lagana said.
Leo suffered an aneurysm the night before he died, blinding him in one eye.
“He was in a lot of pain and he said, ‘Mom, I’m going to die, please pat my head,'” Lagana said.
Leo suffered a seizure the next morning, but Lagana said that because the Prince of Wales did not have the correct equipment to treat children going into cardiac arrest, a nurse had to run for one at Children’s Hospital.
While Leo’s life expectancy was always shorter than average, Lagana said the pain of losing his son was made worse by the thought that he had more time left.
Leo’s family says they are devastated by his loss and miss him dearly.
Leo had been in and out of hospital in Wollongong before he passed away
Lagana claimed that Sydney Children’s Hospital had treated Leo when he was 17, despite the patient limit being 16.
“They said I was always welcome there and I was sure I would be,” she said.
‘When they said no, I was really disappointed. We were furious.
Leo defied doctors’ expectations when he was born weighing just 1.6kg and 28cm long.
His condition, known as primordial osteodysplastic microcephalic majeski type two, is extremely rare, affecting only 200 people worldwide.
While Leo’s life expectancy was always shorter than average, Lagana said the pain of losing his son was made worse by the thought that he had more time left.
Pauline Lagana is photographed with her son Leo on his 21st birthday
“We are heartbroken, we miss him terribly and he has left a huge void here,” Lagana said.
“I’m devastated that they did what they did and I know there are other little kids out there like him and I would hate for that to happen again.”
Lagana said that Leo was a child “in every way” and will be remembered for his cheekiness.
“He didn’t know how to read or write, he was a child and they closed the door on him…”, he said.
NSW Health said in a statement that the care provided to Leo was under review and the department expressed its condolences to his loved ones.
‘SCHN (Sydney Children’s Hospital Network) cares for infants, children and young people from birth to 16 years of age, or 18 years of age for patients with existing chronic health conditions,’ the statement said.
Leo, at just 93cm tall, had a rare form of primordial dwarfism (pictured with American basketball player Michael Holyfield, who is 2.11m tall)
‘As a young person approaches the age of 18, SCHN helps them transition to appropriate adult health care services for ongoing care.
The Randwick Hospitals campus is highly integrated with shared services supporting adult and pediatric patients. Prince of Wales and Sydney Children’s Hospital work together when necessary to provide care for patients.
‘NSW Health’s policies ensure that care is delivered in an inclusive, person-centred and accessible manner for people with disabilities.
“This includes ensuring that reasonable accommodation is available to individuals, such as access to pediatric supplies, and ensuring that staff are equipped with the necessary resources to provide effective, timely, and quality healthcare to all.”