Remy and Payton

‘I was made out to be the crazy parent. I was made out to be mentally unstable. I had police ring me. I had security at my daughter’s [intensive care] door. They made me feel like the crazy one, when all I was simply trying to do was save them from killing my daughter.’

Payton’s daughter Remy was born in the late 2010s with a rare chromosomal disorder. She had the features of Down syndrome and additional features of delayed growth in the womb.

‘I felt from day one that she was being treated differently from all the other babies in the neonatal intensive care unit.’

Payton told the Royal Commission that staff treated Remy as a baby with a disability rather than a baby. She noticed other premature newborns in the unit had feeding plans and speech therapy plans by the time they were 24 hours old. Remy was ignored.

At 12 days old she was transferred to a different hospital. For the next two weeks she received the ‘best care [she] got’.

After that, Payton said, the quality of care declined. Staff routinely told Payton babies with Down syndrome don’t handle various treatments well and babies with the particular chromosomal syndrome ‘don’t respond well’. After a few weeks of hearing this Payton ‘lost it’ and told them, ‘You will treat her like any other baby in the hospital.’

While attending to Remy a nurse accidently burned her. It took 45 minutes for staff to get her to ICU to treat her. The next day the doctor told Payton that Remy had ‘a couple of days’ to live. Payton asked if her rapid deterioration was because of the burn. The doctor was ‘gobsmacked’ – he knew nothing about the burn. He then admitted it might have been, but later other specialists disagreed.

Payton said her ‘issues’ started that day. She wanted another opinion and asked the hospital for Remy’s medical records, but they delayed. ‘It was just one lie after another.’

Meanwhile, Remy needed a canula inserted into her body. For most procedures Remy would scream but then quickly settle. The doctor inserted a needle and then inserted another needle to make the hole bigger. He then dragged the wire down, making two stitches to keep it in place. ‘All of this without any sort of nasal sedation.’ Remy ‘screamed and screamed’ and wouldn’t settle for hours – ‘she was that traumatised.’

Payton was so angry she threatened legal action. She said a senior doctor told her if she threatened the organisation they would cancel Remy’s life-saving surgery.

Remy’s surgery proceeded, but soon afterwards her arm became ‘puffy and swollen and changed colour’. Payton repeatedly told the nurses the wound was infected and she wanted a doctor to review. Nursing staff told her that doctors were aware of her concerns. Remy’s arm was left untreated for three days. When the surgeon eventually saw Remy, he was ‘disgusted’. He told Payton the nurses never informed him about her concerns.

Doctors discussed needing to amputate Remy’s arm to stem the infection. However, they were reluctant to do it until the arm ‘died’ so they didn’t have to remove more of the limb than required. ‘Five times I demanded they amputate,’ Payton said.

That evening Remy had two seizures and she sustained brain damage. ‘You couldn’t even touch her bed. She would cry because she was in that much pain.’ Payton decided ‘enough is enough’ and told doctors to turn her life support off. Doctors provided enough pain medication to keep her comfortable. Remy died a short time later.

Payton requested an autopsy. The hospital refused because of Remy’s underlying heart issue. Payton contacted the coroner’s office who agreed to investigate. They found Remy died because of multiple organ failure. Payton is adamant this confirms Remy died from severe sepsis, which could have been avoided if medical staff had amputated Remy’s arm at an early stage.

‘They murdered [Remy] … because she wasn’t a typical child.’