Gregory, Beth and Maya

‘The fact that I experienced challenges related to access within health all through my children’s lives … is evidence that the system needs to make changes.’

Maya has been working as a medical professional since she migrated to Australia in the 1990s.  

Gregory and Beth, Maya’s children, had a very severe form of a neuronal migratory disorder. Their illness meant they were unable to move independently and required wheelchairs. Both children were non‐verbal.

Gregory was diagnosed 12 days after he was born. His parents were told that he would die within a month, that he was ‘intellectually zero’ and would never recognise his parents.

Gregory did not die within a month – he lived into his early teens. Beth lived for more than three years. Maya said that over time they discovered that Gregory and Beth were actually ‘quite bright’.

When a person can’t communicate, or can’t communicate in a traditional way, Maya told the Royal Commission, ‘their lives are viewed as having poorer quality and they are viewed as second class citizens … Many of our issues stemmed from communication breakdown or pre‐judgement of a situation and decision-making that is not clinically based’.

One example of this occurred towards the end of Gregory’s life. Gregory had never had any urinary issues but suddenly he was having episodes that caused him great distress. He was groaning and crying – which was unusual because he was placid by nature and, having very weak vocal cords, rarely made a sound.

Maya and her husband knew something was wrong. Local clinicians reviewed Gregory and said he was dying. A few days later Maya realised that Gregory’s distress escalated whenever he was passing urine and that there was a white chalky discharge. The clinicians said it was probably semen and was to be expected for a boy his age.

Maya insisted on a scan or ultrasound to check what was going on. The ultrasound showed renal stones. The doctor said that the stones were in a location that would not cause any pain and she would follow up in a few days. The next day Gregory was still in distress, so his parents took him to an emergency department. The medical staff there talked to Gregory’s primary medical contact, then told Maya and her husband to take Gregory home because he was dying.

Maya refused to go home while Gregory was in so much distress, and asked them to investigate the cause.

‘I had to fight to have a request sent to the urology team to review the reason for his urinary retention.’

During his hospitalisation, Gregory’s physical care needs were neglected.

‘We went home for one night and came back to find Gregory lying in a bed soaked with urine and faeces. It was devastating that my own colleagues did not look after Gregory. I shudder to think about what others with no links to the hospital faced,’ Maya said.

‘This is only a small part of the challenges we faced … We struggled to be heard and felt frustrated and angry about the lack of effort invested in helping us identify the reason for Gregory’s distress.’

Because Maya worked in the health system she did not make a complaint. ‘I did not have the strength to deal with the consequences and I was not confident about the outcome,’ she said.

‘I have really struggled in the bereavement period, because I feel that I let Gregory down. I feel that Gregory’s pain and suffering at the end took away his passion for life and his will to live. Gregory and Beth were integral to our family and we miss them.’