Oliver and Petra

‘Does it really matter if your son can’t hear?’

A surgeon asked this question about Petra’s son, Oliver, who has Down syndrome and needed grommets in his ears. When Petra told him it mattered a great deal, the surgeon said Oliver would be ‘at the bottom of the list … because he had a disability’.

Petra told the Royal Commission this is only one example of medical neglect Oliver has experienced.

Oliver saw the same optometrist for seven years who said his eyesight was fine. But, in reality, Oliver was legally blind and should have been wearing glasses at 12 months.

It was no wonder he hadn’t been able to write, Petra said – the letters were fuzzy. Because Oliver lacked the verbal skills to explain what was happening, the teacher thought he was being naughty. ‘He lost so much at school which has impacted his education to this day,’ Petra said.

But the worst example of neglect happened after Oliver woke up one morning with a stiff neck. When pain relief didn’t help, Petra took him to their GP. He suggested they consult their regional hospital – a 45-minute drive away.

Oliver was admitted, given an x-ray, told everything was fine and discharged ‘with a tube of Dencorub … the problem would resolve itself over time’. But he didn’t improve and needed help standing and lying down. Petra also noticed he stopped breathing for a few moments before starting again.

The GP organised an appointment with a sleep clinic at the major children’s hospital several hours’ drive away.

At the appointment Petra mentioned Oliver’s sore neck and the doctor said he would have a neurologist take a look. It was too painful for Oliver to lie down for a CT scan, so he had an MRI under sedation.

Petra explained the MRI revealed a ‘subluxation of the C1/C2 of the spine. The C1 had rotated and fallen off the plane of the C2’. This meant that if Oliver had fallen over in the preceding few weeks he would have died. The neurologist told Petra it was the worst case he had ever seen.

The hospital doctors reviewed Oliver’s case and decided not to operate. They told Petra to take him home. She said this was despite being told ‘any sudden movement in a car or a fall could result in death’.

Petra rang the GP, who contacted the hospital and said if anything happened to Oliver it would be the hospital’s responsibility.

A junior doctor at the hospital approached Petra and suggested she contact a neurosurgeon who operated at a nearby private hospital and the children’s hospital.

The neurosurgeon agreed to operate but there was a three-week wait. Until then, Oliver had to stay in the city, be kept still and not travel in a car, except to get to hospital for the operation.

The operation didn’t go smoothly, Petra said, because the delay meant Oliver’s neck ‘had locked in place’. When the nurses tried to wake him up from the anaesthetic, he didn’t understand what was happening and started thrashing around. It took Petra two hours to convince them Oliver was frightened and they needed to use medication to bring him around.

Later, Petra said, she had to explain to nurses that Oliver couldn’t swallow tablets and needed IV pain medication. It took the doctor’s intervention to make this happen.

‘Over the course of the next seven days I found the nurses treated my son completely differently than the other children.’

Petra would like to see better supports for carers in the health system. She says advocacy is needed not only for the person with disability but also for their carer.

She described having to fight constantly for Oliver to be treated equally, and said there have been too many times when she felt unsupported and alone.