A year-long investigation has revealed the devastating impact on families of ultimately futile procedures conducted by controversial Australian brain surgeon Charlie Teo, currently under investigation by the Health Care Complaints Commission, who charged families vast amounts of money for operations that have catastrophically injured patients.
The joint Sydney Morning Herald, The Age and 60 Minutes investigation spoke to several families, including those with young children left in a vegetative state, about the dreadful price they paid for the hope sold to them by Teo.
“There should be some regulation to stop this. If someone is giving false hope, it’s like a scam,” said Prasanta Barman, who is plagued by guilt after the horrific outcome of the surgery Teo performed on his only child.
In 2018, Barman, an engineer from India, was worried when his four-year-old son Mikolaj had difficulty walking. He was then diagnosed with an incurable and inoperable diffuse intrinsic pontine glioma (DIPG). A second neurosurgeon confirmed the diagnosis.
A friend emailed the famed Australian neurosurgeon for him, saying: “The doctors in Delhi have told him (Barman) no treatment is possible” and they hoped that “a Western doctor can offer his son a lifeline”.
Teo is arguably Australia’s best-known neurosurgeon, renowned for his aggressive surgical style, especially in cases other surgeons deem inoperable.
In 2021, he had restrictions placed on performing brain stem operations and is currently facing a disciplinary hearing over two poor surgical outcomes, one being a DIPG.
On 27 September 2018, Barman was elated when what seemed like a lifeline was offered. “Dr Teo has reviewed the scans and suggested urgent surgery, saying there is a high likelihood of cure if he does the surgery before radiation,” the email from Teo’s office in Sydney said.
“If all goes as planned, the surgery should be curative as we should be able to remove the entire thing… prognosis would be excellent … He should hopefully live a long, happy life.”
However, there is no chance of a happy ending with a DIPG, the most lethal of all childhood cancers. There is no cure and the average life expectancy from the time of diagnosis is between six and 18 months.
“It is the only tumour in paediatrics where, from the day you’re diagnosed, you’re already considered palliative,” said leading American paediatric oncologist Mark Kieran. “It’s not just a question of if you are going to die, it’s when you’re going to die.”
Kieran said any attempt at resection or removal of a DIPG could only result in “neurologic devastation and eventual death either from the surgery or your tumour”.
Asked if there were any clinical or research data anywhere in the world showing a benefit from resecting DIPGs, one of America’s pre-eminent paediatric neurosurgeons, Professor Mark Souweidane, said: “Absolutely not, doesn’t exist.”
Souweidane, head of paediatric neurosurgery at the Weill Cornell Medicine Brain and Spine Centre in New York, has been researching DIPGs for more than two decades. He said surgery was not and has never been an option for this fatal brain tumour and it would be “incomprehensible” for anyone to attempt this.
He explained that because the aggressive tumour has infiltrated the pons, “the part of the brain that decides when you breathe and when your heart beats”, any resection attempt would result in devastating consequences. “To remove that area would remove the very part of the brain keeping you alive.”
Barman told Teo he had no medical insurance, so he would have to meet all the costs himself. He was informed that the operation would cost $150 000 at Prince of Wales Private Hospital in Sydney or $80 000 in Singapore: $40 000 had to be in Teo’s bank account before surgery.
Barman emailed Teo again, asking him to double-check the two MRIs to “make sure about the certainty of the operation” because two Indian neurosurgeons said “there is no treatment for this type of tumour. This is very rare. And once detected, we’ve got only eight to 12 months in our hand,” Barman recalled.
But Teo said: “Our diagnosis remains the same … we think we can cure Mikolaj.” That same day, Barman’s friend set up a GoFundMe page to help with the steep costs for the operation to remove Mikolaj’s DIPG in Singapore.
The crowdfunding page referred to the tumour as “inoperable”.
Barman drained his savings and retirement fund, Mikolaj’s school helped and friends donated money for the operation on 11 October 2018. Photos the night before the operation showed the happy boy in his hospital bed surrounded by balloons.
Teo only met the boy for the first time as he was being wheeled into theatre at Singapore’s National University Hospital. Half an hour before the operation, he told Mikolaj’s parents he tumour was diffuse, meaning it had spread, and for the first time, suggested he might not be able to remove it all.
Although the Barmans were alarmed, they felt it was too late to back out.
After a 10-hour operation, Teo spent 10 minutes telling the parents he’d removed 85% and that it appeared to be benign. With that, Teo was gone: they never saw him again.
However, after the operation the pathology results revealed that the tumour was not benign. It had the “H3K27M mutation”, the defining molecular marker for the devastating DIPG.
Before surgery, if Teo doubted the two previous diagnoses of a DIPG, he could have done a biopsy to be certain. But he didn’t, and rather than delivering a miracle, Teo left the Barmans with a nightmare. Their once happy and playful little boy would never walk, talk, or eat on his own again.
The Barmans had to pay $40 000 to fly Mikolaj back to India, where he languished in intensive care for months. His care cost nearly $250 000 and the rest of his short life was spent in a room staring at a ceiling; his only means of communication was blinking his eyes.
Ten months after the catastrophic operation, the aggressive tumour returned and Mikolaj died.
Mikolaj’s MRI scans were shown to several neurosurgeons who immediately identified the tumour as a DIPG. When told that an unnamed surgeon, offering a cure, had performed a resection, they were horrified.
Bella’s battle
Mikolaj Barman was not the only one. A year after his death, another family faced the dire diagnosis of a DIPG.
In April 2020, doctors at John Hunter Hospital in Newcastle told Gene Howard and Sarah Higginbottom their seven-year-old daughter, Bella, had a DIPG and nothing could be done except to provide radiation as part of palliative care.
Howard refused to accept there was no cure and turned to the high-profile Teo.
Teo’s notes after the initial consultation reveal that he “agreed this is likely to be a DIPG”.
Bella’s grandmother Mariza Howard, who was at the consultation, recalled Teo telling them there was a tiny chance the scan might be wrong. Teo offered to do a biopsy and, while doing that, if there were parts of the tumour he thought he could remove to buy Bella more time, he would.
But instead of waiting for conclusive biopsy results, Teo wanted to operate the next day. The Howards leapt at the chance to extend Bella’s life. However, the surgery would cost $100 000 and $50 000 had to be in Teo’s account that night.
“We were trying to figure out how to get it ourselves, but even to get a loan takes weeks,” said Gene who, in desperation, even tried to sell his kidney.
His boss loaned him the money and the operation took place at Prince of Wales Private Hospital in Sydney the next day.
Just how much of the tumour Teo removed would vary. Immediately after the surgery, Gene was ecstatic when Teo said he’d removed 95% of the tumour which, he said, was low-grade and slow growing.
The operation report recorded a greater than 50% resection.
Experts told the joint investigation that even if 99.9% of the tumour were resected, which would probably result in immediate death, a resection is pointless as the cancer has already spread and will come roaring back.
The cancer cells “are going to continue to grow”, Kieran said. “They will basically take over the entire brain because they don’t respond to surgery, or radiation, and they don’t respond to any currently known chemotherapy. Unfortunately, we do not cure kids with DIPG.”
Three days after surgery, the pathology results came back. Bella’s tumour had the H3K27M mutation and the diagnosis was a DIPG.
But in his report, Teo cast doubt on the validity of the H3K27M mutation as an indicator. While radiation is the accepted treatment to relieve the symptoms, Teo advised against this.
His report noted that he had counselled the Howards that “many neuro-oncologists and reputable neurosurgeons would be aghast at this course and would be strongly recommending radiotherapy plus or minus chemotherapy” but that Jean [sic] “is fully aware of the two different options” and that it was his choice not to have the radiation.
Teo offered the Howards a second operation at the same price as the first, but as the Howards were driving home after Bella’s 12-week scan, Teo rang with some shattering news.
“The scan’s come back, it’s grown … probably three times as big as what it originally was,” Teo told him.
Bella deteriorated quickly and required 24-hour care. In January 2021, eight months after diagnosis, she died. Her official cause of death was recorded as a Diffuse Intrinsic Pontine Glioma.
In response to questions about his DIPG operations, a spokesman for Teo said: “Diffuse Intrinsic Pontine Glioma (DIPG) /Diffuse Midline Glioma (DMG) is the most aggressive childhood brain cancer… incurable and inoperable. Dr Charlie Teo has never operated on a pure DIPG/DMG, never recommended surgery on such a tumour.”
Teo declined a request for an interview sand aid the debate around “inoperable” brain stem tumours was a complicated one and “misinformation was rife”.
In August 2021, seven months after Bella Howard died, the NSW Medical Council was so concerned about Teo’s operations on brain stem tumours, including a DIPG, that they placed restrictions on his practising certificate.
In November 2021, Healthscope, which runs 41 private hospitals, withdrew Teo’s accreditation at Prince of Wales Private Hospital, where he has worked for years.
In September, Teo was due to face a two-day disciplinary hearing after a lengthy investigation by the Health Care Complaints Commission. However, it was postponed to a date still to be determined, as one of the hearing days became a public holiday after the queen’s death.
Teo has defended his operations on children with tumours that he accepts are normally incurable and inoperable. “Look, I’m not sorry that I operated, I’m sorry about the outcome,” he said on TV.
He admits Mikolaj’s operation had a terrible outcome but disputed the type of tumour Mikolaj had and claimed he only performs this kind of risky operation because his patients or their family elect to take a chance on surgery.
“Are you going to deny it to them if they want it? If they want to take that chance?” he asked.
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