A surgeon was banned from one procedure. It was too late for Taylah

Taylah Keating spent hours watching make-up and hairstyling tutorials online. She became the resident beautician at her family home in Ferntree Gully in Melbourne’s south-east, where friends regularly dropped by for a blow wave.

This talent made it particularly cruel when Taylah, known for her humour and strength, lost her own hair in the weeks before she died in April 2020 at 20 years old.

Taylah Keating’s family were not informed of AHPRA’s investigation into her daughter’s death. Credit:Joe Armao

The death would shake the Keating family’s faith in Australia’s medical system, particularly when they learnt the national healthcare regulator AHPRA (Australian Health Practitioner Regulation Agency) had investigated Taylah’s treatment without informing them.

Mother Jodie only learnt through her lawyers in January that Adelaide vascular surgeon Dr James Ian Spark – also known as Dr Ian Spark – was now banned from performing the same procedure he had done on her daughter two years earlier. Her lawyers had seen the decision reported publicly, but were not officially notified.

“I felt sick,” Jodie says. “Betrayed. It was in the news before we knew about it.”

The Age and Sydney Morning Herald has revealed AHPRA is plagued by lack of transparency, poor accountability, a “toxic” workplace culture and concerns that poor investigations are causing death and injury among patients.

Health Minister Mark Butler has since launched a review of AHPRA and the regulator has called for legislative change to improve patient rights, support and communication during its investigations.

A family’s horrific ordeal

For the Keatings, it is all too late. In the corner of their living room is a collection of Taylah’s photographs and possessions. Father Anthony Keating can only manage a few words about his daughter, before he looks down, tightens his jaw and eyes swell with tears. “It was horrific,” he says.

Taylah Keating with Dr Sparks before he performed the surgery that later became the subject of a complaint by a fellow surgeon. Credit:Jodie Keating

While nothing will heal this family’s pain, they are speaking out to prevent others from enduring the same treatment. “Why didn’t they tell us? Surely, the regulator has to inform the family?” says Jodie.

Taylah was an active and quirky teenager who filmed comedy sketches on her phone, learnt hip-hop dancing and excelled as a basketballer for the Ferntree Gully Falcons.

But that all stopped in mid-2018 when she started showing symptoms of a rare condition known as Median Arcuate Ligament Syndrome (MALS) – a difficult-to-diagnose condition where excessive compression of the celiac artery causes severe pain.

It made her faint and vomit regularly, caused bloating and made it painful for her to swallow water or hold down food.

The most common treatment for MALS is surgery, so the family researched extensively to find the best person for the job. In September 2019, they travelled to Adelaide to meet Spark, a vascular specialist and professor with experience treating people with the illness.

Spark confirmed Taylah had MALS and also diagnosed her with the rare vein condition Nutcracker Syndrome. He recommended two surgeries be performed at once to address both conditions.

Taylah Keating’s scar after the surgery by Dr Spark, who has since agreed never to perform the surgery again.Credit:Jodie Keating

“Long story short he can fix everything in one surgery,” Taylah told her social media followers at the time. “I am so blessed to have my mum by my side this entire journey.”

Without private health insurance, the family paid $36,000 for the procedure to be completed at Flinders Private Hospital in Adelaide. Taylah was ecstatic about her life returning to normal and building a future with her partner Billy. But soon after the operation, she was in agonising pain. Scans were ordered and Spark said another surgery was necessary.

The family agreed, and after the second surgery, Taylah’s health seemed to improve, so she was discharged. Unfortunately, it wasn’t long until her pain returned, this time so severe she was rushed to the public emergency department.

There, Taylah was diagnosed with bowel ischemia – her bowel was dying and immediate surgery was needed to save her life.

Taylah Keating weighed just 35 kilograms before her death. Credit:Jodie Keating

Spark came to the emergency ward after the second surgery but explained he couldn’t arrange a team in time, so the public system would have to take over.

Taylah spent days in the intensive care unit, where a new team worked around the clock until her condition stabilised. Five weeks after arriving in Adelaide, the family finally flew back to Melbourne for Christmas.

But the ordeal was far from over. Jodie estimates the ambulance was called more than a dozen times to their home in the next four months as her daughter dealt with constant vomiting, pain so severe it made her scream and rapid hair and weight loss. By the end, she weighed just 35 kilograms.

A team of 18 specialists at the Box Hill public hospital took over her care. As she underwent further surgeries and multiple ICU admissions, she continued her usual banter and positive outlook.

We trusted the expert advice.

“She was my superhero,” says Jodie.

“We trusted the expert advice.”

On April 14, 2020, Taylah woke up early in the morning gasping for air, waking her partner Billy. For the first time, Taylah told her mother: “I think I’m dying.”

The ambulance arrived and raced through red lights with sirens blaring at a pace Jodie had never seen before. Taylah was bleeding internally and was rushed to ICU.

A few hours later, the surgeon walked out of the ward to deliver the news: “I’m sorry, we’ve lost her.”

‘Don’t let this go’

The hospital informed the coroner, who ordered an autopsy and launched an investigation into Taylah’s treatment. In one meeting, father Anthony says a nurse delivered an important message.

“She said to me, ‘Don’t let this go. Follow it through. Push, push’,” he recalls being told.

The conversation validated an uneasy feeling he had about Taylah’s treatment from the start. “Something wasn’t sitting right with me,” he says. “Gut feeling.”

The parents engaged lawyers Maurice Blackburn to assess a medical negligence claim. That claim is in its infancy, and while Sparks acknowledged his conduct was unsatisfactory, it has not been found to be negligent.

Maurice Blackburn principal Dimitra Dubrow said more information would emerge through the coronial process, but for now, it was obvious the family has “suffered an unimaginable loss”.

Taylah Keating was planning to build a life with her partner Billy, but died at the age of 20. Credit:Jodie Keating

“While she may have had to deal long-term with her condition of MALS, to have lost her life at such a young age is a terrible tragedy,” Dubrow says.

In January, the lawyers learned that restrictions had been placed on Sparks’ registration following a lengthy AHPRA investigation.

The investigation was conducted, without the family’s knowledge, after a fellow surgeon at Flinders Private Hospital filed a complaint to the watchdog about Sparks’ treatment of Taylah four months before her death.

It was the second complaint made about his practice.

AHPRA declined to take immediate action but took a statement from Sparks and engaged experts who raised doubts about his “diagnosis and decision to perform [the] surgery which was deemed to carry with it a significant risk of morbidity and mortality”, according to the tribunal finding.

The medical board found his conduct was unsatisfactory and enforced wide-ranging conditions on his practice to protect the public, including that he be supervised by an approved specialist for all operations.

Through lawyers, Spark challenged the conditions – offering to never again perform the surgery for Nutcracker Syndrome, while being supervised for a small number of other surgeries. He also agreed to complete additional training in patient consent and comply with an audit of his practice.

Taylah’s family was upset to hear an investigation was conducted without their knowledge and that no one interviewed them about their experience.

“They’ve only got one side of the story. How is that a valid finding?” asks Jodie. “I was angry, really angry, and hurt. I don’t know what their processes are.”

After the tribunal finding was delivered, the Adelaide Advertiser published a story about the action taken against Spark, identifying Taylah by her initials and age. The article claimed Taylah suffered from an eating disorder – which the family says is false – which forced them to disclose details of Taylah’s condition and treatment to friends. They remain shocked no one told them about AHPRA’s investigation. “Especially when it’s a negative finding,” Jodie says. “Why wouldn’t they tell the family?”

AHPRA declined an interview, but a spokesperson said regulatory decisions were provided to the person who made a complaint, the “notifier”, and it was the health services and practitioners who had the “ethical obligation of open disclosure to help the family understand what’s gone wrong”.

The spokesperson said the agency could not comment on Taylah’s treatment specifically, but in general, patients were not named in media statements and AHPRA sought to inform patients if it becomes aware of media commentary.

“We extend our heartfelt condolences to the parents and family of Taylah for their sad loss,” the spokesperson said.

The tribunal’s decision described Spark as a pioneer in his field, “especially regarding extraordinary or unusual medical presentations.

“This matter, however, is a timely reminder that all medical specialists who perform surgery, should exercise extra caution when proposing and undertaking out of the ordinary and difficult surgical procedures, and, to ensure that there is appropriate peer consultation, including the involvement of any allied health practitioners where required,” it said.

Dubrow said the conditions show concerns about Taylah’s treatment were valid, while the regulator’s lack of communication with the Keatings “is unfortunate and shows yet another gap in the system”.

The Keatings live with grief every day but are speaking out in the hope something will change.

“I can’t change anything so I guess this will just be a source of anger that I have forever,” Jodie says. “But I don’t want anybody else to suffer these consequences.”

Spark was contacted for comment.

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