Could a scan seven years ago have found the sleeping killer in a WA girl's head?

Sydney Morning Herald

11-06-2025

After her birth in the Kimberley in July 2014, Jane* was given a year to live owing to a rare, widespread congenital syndrome that impacted her brain development and ability to see, hear, walk and talk.
But 10 years on, with the help of her foster mum, Sharyn Morris, she defied the odds and flourished into a bright little girl who loved the solar system and Elmo. Jane captured the hearts of anyone who met her – including Health Minister Meredith Hammat.
This incredible progress was cut short in August last year, when Jane died unexpectedly from a brain bleed.
'She just was developing so well, and there was no reason to believe that anything was going to happen to her,' Morris says.
The bleed was thought to have been caused by a blood vessel abnormality hidden in her brain. It was a condition that doctors consistently assured Morris that Jane did not have, and recommended against scans that would have identified it.
This was despite years of medical documents that said otherwise, which has led Morris to demand a coronial inquest into her foster daughter's death.
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In echoes of previous cases of parents' concerns being ignored at WA hospital – such as those of Aishwarya Aswath and Sandipan Dhar – Morris says Jane's death could have been prevented if her requests for more rigorous scans years ago had been acted on.
'She would say to me, '[Jane], grow up to be a big girl' and I'd say, 'Yes, honey, mum promises you, you'll grow up to be a big girl',' Morris says.
'She just never got that opportunity. They took everything away from her and took her away from us. They destroyed our lives as well. It's not right.'
Shock death
There were only four children in the world with Jane's condition in 2019.
Under that she had a multitude of other conditions, including dark skin lesions covering her head and body, tumours on her brain and in her eyes, rickets, autism, and epilepsy.
Morris, 61, fostered Jane 10 days after her birth at the request of her biological mother, and was eventually given a special guardianship order, granting her total parental responsibility.
Despite obtaining permission from Morris to write this story, this masthead cannot reveal the girl's real name – Jane is a pseudonym – nor show pictures of her because the Department of Communities retains control over publication of information about her.
The department refused to allow the publication of her name or images of her on the request of her biological family for cultural reasons.
Jane's conditions meant she was a regular visitor to Perth Children's Hospital, but despite this, in recent years her speech and walking were advancing in leaps and bounds thanks to a new medication regimen.
Morris says her foster daughter was doing so well, Jane would have probably outlived her, which is why her rapid deterioration last year came as such a shock.
Morris had taken Jane to PCH in February and April 2024, complaining of headaches and 'whipper snipper' noises in her head.
She was given an MRI during that visit, but doctors found no issues or bleeding.
By August, Jane had deteriorated to the point she was no longer walking.
'It would appear that four years after Aishwarya's death that nothing has changed.'
Family advocate Suresh Rajan
On August 22, Jane suddenly collapsed on the kitchen floor of her Marangaroo home and was rushed to hospital by ambulance.
That afternoon was the last time Morris saw her daughter conscious.
Doctors reported her seizing, but Morris repeatedly told them they were not like her regular seizures.
She says that evening she pleaded with doctors for a CT scan, but it did not happen until early morning the next day. The scan found the bleed.
In a clinical incident report known as a SAC1 report, seen by this masthead, doctors noted Jane had to be stabilised before they could do the scan.
Jane was eventually found to have had a massive brain bleed, and surgery to drain it was unsuccessful.
Morris and her daughters, who had travelled from across the state to see Jane, switched off her life support at 5.55pm on August 24 in time for sunset, which Morris says was her favourite time of day.
Ten months on, Morris is yet to receive Jane's official cause of death, but the SAC1 report and her discharge summary both note a blood vessel deformity known as an arteriovenous malformation (AVM) found in her brain after her death may have been the source of the bleed.
Conflicting reports
AVMs are a tangling of arteries and veins that can disrupt the flow of blood and cause internal bleeding.
According to the Sydney Children's Hospital, AVMs usually form during development or shortly after birth.
They are often only found if they start bleeding, but can be detected using medical imaging techniques like MRIs, CT scans and angiograms.
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Angiograms are considered the gold standard of diagnosing AVMs, which are treatable through surgery, radiosurgery or endovascular treatment.
Jane's medical documents from 2017 onwards show conflicting reports about the presence of an AVM, and that Morris' repeated requests for an angiogram did not eventuate.
In a 2017 letter between neurologists and PCH, obtained by Morris under Freedom of Information laws, it was revealed an MRI taken found a possible AVM, but it was not conclusive and would require an angiogram.
The doctor said there was a risk associated with the angiogram, and they had discussed whether they outweighed the risk of the AVM haemorrhaging.
That same letter noted Morris was 'very keen' to do the angiogram and the doctor agreed to do it if the Neurological Intervention and Imaging Service of WA supported the move.
In a separate letter from December 2018, NIISWA found there was 'no evidence' of an AVM after an enhanced MRI scan.
Jane never received an angiogram, and in all her annual care plans until her death, it was noted a brain lesion spotted in the past MRI was 'not an AVM'.
'No further investigation, surgery or intervention is required from NIISWA point of view,' it said.
However, discharge summaries from several hospital visits from March 2020 until her final visit, seen by this masthead, clearly stated she did have an AVM.
Jane's final discharge notice notes her brain bleed was thought to be caused by a small AVM, which was 'noted on previous MRI image series'.
This conflicts with the SAC1 report, where a panel found previous scans 'did not demonstrate an AVM or other vascular lesion for which prior neurological intervention would have indicated.'
Morris says she only noticed mentions of the AVM on Jane's discharge summaries after her death.
She says had she been alerted sooner, she would have pushed harder for more scans and treatment.
'I'm of the understanding that she doesn't have one. I'm her primary carer. I have a special guardianship order for this child, she's my child. I'm raising her, and I'm told by doctors she doesn't have one,' she says.
Morris claims Jane's Indigenous background and disabilities may have been a factor in her struggle to get her properly diagnosed.
'In seven years why did they not do it? Because she's Indigenous, because she was special needs? What are their answers?' she said.
'No faith' in Aishwarya's CARE call
During Jane's final days in hospital, Morris did not activate the Aishwarya CARE call system – the system implemented in WA hospitals after Aishwarya Aswath's death in 2021 to help parents escalate their concerns.
Both Morris and the clinical incident report concede Morris had made her concerns heard enough to have senior medical staff in the room, but Morris says she had no faith in the system.
'Why would I? I already have [senior doctors] treating my child, and they won't listen to me. Who is going to take notice of me at 10 o'clock at night?' she says.
Morris' concerns around the Aishwarya CARE call system concerned family advocate Suresh Rajan, who also helped Aishwarya's parents in the aftermath of their daughter's death.
'When the Aishwarya CARE call was implemented, the then-health minister, now premier, wrote to us to advise that the system was to 'change the culture of the WA Health Service so that patients and caregivers were listened to',' he says.
'It would appear that four years after Aishwarya's death that nothing has changed.'
What needs to change
Morris is furious at the handling of Jane's care and subsequent investigations, including the SAC1 report, which suggested her death was not preventable.
She says she did not have the opportunity to address the panel conducting the report, nor respond to its findings.
She wants Hammat's support to launch a coronial inquest into her daughter's care and death and is demanding a raft of changes in hospital accountability.
These include more accountability of individual doctor decision-making, laws to force doctors to act on observations and concerns of parents, establishing an independent medical investigation body and more transparency around investigations.
'Parents are right'
Health Minister Meredith Hammat, who attended Jane's funeral, confirmed she would reach out to Morris to discuss her concerns, but would not say whether she supported her request for a coronial inquest.
'[Jane] was an incredible little girl and loved by many people in our community,' she said.
'I've spoken with Sharyn many times over the years, most recently just a few weeks ago. Sharyn is a strong woman and a fearless advocate, and I'm sorry for her loss.
'I won't discuss the details of our meetings, but it is my firm view that parents and guardians should be listened to. They know their child best.
'Our conversations are ongoing, and I will continue to support Sharyn as both her local member and Minister for Health to ensure she gets the answers she needs.'
A Child and Adolescent Health Service spokesman said they could not discuss confidential patient details.