While nothing will cure this family’s pain, they are speaking out to prevent others from undergoing the same treatment. ‘Why didn’t they tell us? Surely the supervisor must inform the family?” says Jodie.
Taylah was an active and headstrong teenager who filmed comedy skits on her phone, learned hip-hop dancing, and excelled as a basketball player 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 hard-to-diagnose condition in which over-compression of the celiac artery causes severe pain.
It caused her to pass out and vomit frequently, causing bloating and making it painful for her to swallow water or keep food down.
The most common treatment for MALS is surgery, so the family did extensive research to find the best person for the job. In September 2019, they traveled to Adelaide to meet Spark, a vascular specialist and professor with experience treating people with the disease.
Spark confirmed that Taylah had MALS and also diagnosed her with the rare vein condition Nutcracker Syndrome. He recommended performing two surgeries at once to address both conditions.
“Long story short, he can fix everything in one operation,” Taylah told her social media followers at the time. “I’m so blessed to have my mom by my side this entire journey.”
With no private health insurance, the family paid $36,000 for the procedure to be completed at Adelaide’s Flinders Private Hospital. Taylah was ecstatic about her life getting back to normal and building a future with her partner Billy. But soon after the operation, she was in terrible pain. Scans were ordered and Spark said another surgery was needed.
The family agreed, and after the second surgery, Taylah’s health seemed to be improving, so she was discharged. Unfortunately, it wasn’t long before her pain returned, this time so severe that she was rushed to the public emergency room.
There, Taylah was diagnosed with intestinal ischemia – her bowel was dying and immediate surgery was needed to save her life.
Spark came to the emergency room after the second surgery, but explained that he couldn’t arrange a team in time, forcing the public system to take over.
Taylah spent days in intensive care, where a new team worked around the clock until her condition stabilized. Five weeks after arriving in Adelaide, the family finally flew back to Melbourne for Christmas.
But the ordeal was far from over. Jodie estimates that the ambulance was called to their home more than a dozen times over the next four months because her daughter was constantly throwing up, pain so bad she screamed and fast hair and weight loss. In the end, she weighed only 35 kilograms.
A team of 18 specialists at 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.
Taylah’s mother Jodie Keating
“She was my superhero,” says Jodie.
“We trusted the expert advice.”
On April 14, 2020, Taylah awoke 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 drove through a red light 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 room to break the news: “I’m sorry, we lost her.”
‘Don’t let this go’
The hospital informed the coroner, who ordered an autopsy and launched an investigation into Taylah’s treatment. At a meeting, Father Anthony says a nurse delivered an important message.
“She told me, ‘Don’t let this go. Follow it through. Push, push,’ he recalls being told.
The conversation confirmed an uneasy feeling he had about Taylah’s treatment from the start. “Something was wrong with me,” he says. “gut feeling.”
The parents brought in attorneys Maurice Blackburn to review a medical negligence claim. That claim is still in its infancy, and while Sparks acknowledged his conduct was unsatisfactory, it has not been found negligent.
Maurice Blackburn director Dimitra Dubrow said more information would emerge from the corona process, but for now it was clear that the family has suffered “an unimaginable loss”.
“While she may have been dealing with her MALS condition for a long time, it is a terrible tragedy to lose her life at such a young age,” says Dubrow.
In January, the attorneys 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 complained to the watchdog about Sparks’ treatment of Taylah four months before her death.
It was the second complaint about his practice.
AHPRA declined to take immediate action, but took a statement from Sparks and called in experts who cast doubt on his “diagnosis and decision to perform (the) surgery that was deemed to carry a significant risk of morbidity and mortality to bring,” the tribunal said.
The medical board found his conduct unsatisfactory and imposed extensive conditions on his practice to protect the public, including that he be supervised by a licensed specialist for all surgeries.
Through lawyers, Spark challenged the terms and offered to never perform the surgery for Nutcracker Syndrome again, while under supervision for a small number of other surgeries. He also agreed to take additional training in patient consent and comply with an audit of his practice.
Taylah’s family were angry to learn that an investigation had been conducted without their knowledge and that no one had interviewed them about their experiences.
“They only have one side of the story. How is that a valid finding?” asks Jodie. “I was angry, very angry and hurt. I don’t know what their processes are.”
After the tribunal’s decision was made, the Adelaide advertiser published a story about the action against Spark, identifying Taylah by her initials and age. The article alleged that Taylah suffered from an eating disorder – which the family says is not true – forcing them to reveal details about Taylah’s condition and treatment to friends. They remain shocked that no one told them about AHPRA’s research. “Especially if it’s a negative finding,” says Jodie. “Why wouldn’t they tell the family?”
AHPRA declined an interview, but a spokesperson said regulatory decisions were provided to the person making the complaint, the “reporter,” and that it was health authorities and practitioners who had an “ethical obligation of open disclosure to help the family understand what went “wrong”.
The spokesperson said the agency could not comment specifically on Taylah’s treatment, but in general patients were not mentioned in media statements and AHPRA tried to inform patients if it became aware of media comments.
“We extend our sincere condolences to Taylah’s parents and family for their sad loss,” the spokesperson said.
The tribunal’s decision described Spark as a pioneer in his field, “particularly with regard to extraordinary or unusual medical presentations.
“However, this issue is a timely reminder that all medical specialists performing surgery should take special care when proposing and performing extraordinary and difficult surgical procedures, and to ensure that appropriate peer consultation is in place, including the involvement of all allied health care workers as needed,” it said.
Dubrow said the terms show concerns about Taylah’s treatment were justified, while the regulator’s lack of communication with the Keatings is “unfortunate and demonstrates yet another loophole in the system.”
The Keatings live with grief every day, but speak out in the hope that something will change.
“I can’t change anything, so I think this will just be a source of anger that I’ll have forever,” says Jodie. “But I don’t want anyone else to suffer these consequences.”
Spark was contacted for comment.
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