Jazmine and Melody
Content Warning: These stories are about violence, abuse, neglect and exploitation and may include references to suicide or self-harming behaviours. They may contain graphic descriptions and strong language and may be distressing. Some narratives may be about First Nations people who have passed away. If you need support, please see Contact & support.
‘Disability starts in healthcare … I think that’s where the starting problem is – low expectations of people with disability.’
Jazmine was in her 20s when she was diagnosed with a benign brain tumour. Following surgery she underwent extensive rehabilitation and was able to return to living independently, driving a manual car and working. However 18 months later, in the early-2010s, a scan revealed another mass on Jazmine’s brain. She needed more surgery.
During the second operation Jazmine acquired a severe brain injury. When she regained consciousness she was non-responsive, had very limited memory and no ability to form new memories.
Her sister Melody told the Royal Commission she later learnt ‘cotton wool was left in [Jazmine]’s brain during the [first] surgery … and a misdiagnosis may have led to the surgery which resulted in [her] disability’.
In the days and months that followed, medical staff repeatedly told Melody that Jazmine would never improve. The head of social work urged her to ‘find a nursing home that will accept your sister … because you are never going to get the help you need to bring her home’.
Melody said this attitude influenced the standard of care Jazmine received. Medical staff treated her very differently to how they treated her after the first operation. Melody, Jazmine’s legal guardian, raised multiple concerns with the treating team. They dismissed and blocked her.
Melody recalled Jazmine was constantly nauseous after the operation and needed anti-nausea drugs. She noticed Jazmine gained a significant amount of weight, which was puzzling because she had no appetite and struggled to eat small amounts of food. Melody also noticed unusual hair growth on Jazmine’s body.
Eventually the treating team organised further investigations, but neglected to tell Melody. She arrived to visit Jazmine and found an endocrinologist trying to consult with her. The doctor suggested Jazmine had a germ cell tumour on her reproductive organs. She ruled out pregnancy because Jazmine had been in hospital for five months.
The next day an ultrasound revealed Jazmine was 21 weeks pregnant and was possibly one week pregnant when she had her operation.
‘[Jazmine] had been in the health care system in a non-responsive state for the entirety of her pregnancy and the hospital failed to diagnose the pregnancy,’ Melody said.
The hospital immediately applied for permission to perform a ‘special procedure’ which Melody learnt was code for a termination.
She asked for information about Jazmine’s health, the health of the fetus, the risks of a full-term pregnancy and a late-term termination. Instead of providing this information, the hospital applied to remove Melody as Jazmine’s legal guardian. They suggested Melody felt unable to make decisions for Jazmine, citing her distress, being a single mother and her health – Melody has multiple sclerosis.
‘I had never provided any indication to any representative of [the] hospital that I was unwilling or unable to continue [as legal guardian],’ Melody said.
Melody tried to get Jazmine discharged from the hospital because she was ‘literally scared for her life’. When this failed she engaged lawyers to keep Jazmine safe and sought a second medical opinion. The doctor advised it was safe for Jazmine to continue the pregnancy.
Following her baby’s birth, Jazmine transferred to residential aged care. However, she didn’t respond well. ‘She started cutting her arms up. She didn’t know where she was. The only thing she knew in the world was me.’ Melody left her job, brought Jazmine home and became her full-time carer.
Worried about what would happen to Jazmine if anything happened to her, Melody decided to pursue a compensation claim. But after years of protracted and traumatising legal battles she ran out of funds.
‘We were never compensated. We never got an apology … I will never know what actually happened to my sister in that hospital. I will never know.’
The NDIS now funds Jazmine’s supports and almost 10 years on she no longer needs 24/7 care. She’s able to manage her chronic pain and is more independent. ‘I’m no longer my sister’s full-time carer and as of about two months ago [Jazmine]’s actually started volunteer work,’ Melody said.
‘If you have a decline in function, if you’re born with a disability everything comes from the healthcare model … If you’ve got people at the coal face with low expectations of people with disability … it can send people in the wrong direction … “Oh you may as well find a nursing home”, is still going on.’
Disclaimer: This is the story of a person who shared their personal experience with the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability through a submission or private session. The names in this story are pseudonyms. The person who shared this experience was not a witness and their account is not evidence. They did not take an oath or affirmation before providing the story. Nothing in this story constitutes a finding of the Royal Commission. Any views expressed are those of the person who shared their experience, not of the Royal Commission.