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The Australian neurosurgeon leaving households paying a horrible value

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Controversial neurosurgeon Charlie Teo has charged households extraordinary quantities of cash for finally futile operations which have catastrophically injured sufferers, a joint Sydney Morning Herald, The Age and 60 Minutes investigation can reveal.

A number of households, together with these with younger kids who had been left in a vegetative state, have spoken out concerning the dreadful value they paid for the hope Dr Teo bought them.

“There ought to be some regulation to cease this. If somebody is giving false hope, then it’s like a rip-off,” mentioned Prasanta Barman, who’s tormented by guilt, following the horrific consequence of the futile surgical procedure Teo carried out on his solely baby.

In mid-September 2018, Barman, an engineer from Assam in India, was anxious when his son, four-year-old Mikolaj, appeared to have issue strolling.

Mikolaj Barman (centre) was diagnosed with a very rare type of tumour – a diffuse intrinsic pontine glioma (DIPG). He is pictured with his father, Prasanta, and his mother, Sangeeta.

Mikolaj Barman (centre) was recognized with a really uncommon sort of tumour – a diffuse intrinsic pontine glioma (DIPG). He’s pictured along with his father, Prasanta, and his mom, Sangeeta.Credit score:

He and his spouse Sangeeta had been devastated when their son was recognized with an incurable and inoperable diffuse intrinsic pontine glioma (DIPG). A second neurosurgeon confirmed the prognosis.

Determined for a miracle, a buddy emailed the famed Australian neurosurgeon on his behalf, saying: “The medical doctors in Delhi have instructed him [Barman] that no therapy is feasible” and so they had been hoping that “a Western physician can provide his son a lifeline”.

Teo, 64, is arguably Australia’s best-known neurosurgeon. He’s famend for his aggressive surgical type, particularly in instances different surgeons deem inoperable, and he has many grateful sufferers who laud his successes.

Within the media, he’s usually portrayed as a maverick, motorbike-riding outsider preventing in opposition to each the medical institution and his colleagues who, he suggests, are jealous of his superior abilities.

In 2021, Teo had restrictions positioned on his skill to carry out mind stem operations and faces a disciplinary listening to over two poor surgical outcomes, considered one of which was a DIPG.

On September 27, 2018, Barman was elated when what appeared like a lifeline was provided. “Dr Teo has reviewed the scans and prompt pressing surgical procedure, he mentioned there’s a very excessive probability of remedy if he does the surgical procedure earlier than radiation,” the e-mail from Teo’s workplace in Sydney mentioned.

The next day, replying to Barman’s questions concerning the prognosis and dangers, Teo’s workplace emailed, saying: “If all goes as deliberate, the surgical procedure ought to be healing as we should always be capable of take away your complete factor. Which means prognosis could be glorious … He ought to hopefully reside a protracted and blissful life.”

Nevertheless, there isn’t any probability of a contented ending with a DIPG, probably the most deadly of all childhood cancers. There isn’t any remedy and the common life expectancy from the time of prognosis is between six and 18 months.

“It’s the solely tumour in paediatrics the place, from the day you’re recognized, you’re already thought of palliative,” main American paediatric oncologist Mark Kieran instructed the joint investigation.

“It’s not only a query of if you’re going to die, it’s actually while you’re going to die.”

Kieran mentioned any try at resection or removing of a DIPG may solely end in “neurologic devastation and eventual demise both from the surgical procedure or your tumour”.

Requested if there was any scientific or analysis knowledge anyplace on the earth that exhibits a profit from resecting DIPGs, considered one of America’s pre-eminent paediatric neurosurgeons, Professor Mark Souweidane, mentioned bluntly: “Completely not, doesn’t exist.”

Souweidane, head of paediatric neurosurgery on the Weill Cornell Drugs Mind and Backbone Centre in New York, has been researching DIPGs for greater than 20 years. He mentioned surgical procedure will not be and has by no means been an choice for this uniformly deadly mind tumour and that it might be “incomprehensible” for anybody to try this.

There ought to be some regulation to cease this. If somebody is giving false hope, then it’s like a rip-off.

Prasanta Barman

The professor defined that as a result of the aggressive tumour has infiltrated the pons, “the a part of the mind that decides while you breathe and when your coronary heart beats”, any try at resection will end in devastating penalties for the kid.

“To go in and take away that space would take away the very a part of the mind that retains you alive.”

Barman defined to Teo that he had no medical insurance coverage, so he must meet all the prices himself.

He was knowledgeable that the operation would value $150,000 at Prince of Wales Non-public Hospital in Sydney or $80,000 in Singapore, of which $40,000 must be in Teo’s checking account earlier than surgical procedure.

Barman despatched one other e-mail to Teo asking the well-known neurosurgeon to double-check the 2 MRIs to “make sure that concerning the certainty of the operation” as a result of the opinion of the 2 Indian neurosurgeons was that “there isn’t any therapy for one of these tumour. That is very uncommon. And as soon as detected, we’ve obtained solely eight to 12 months in our hand,” Barman recalled.

However Teo begged to vary. “Our prognosis and suggestion stays the identical and we expect we are able to remedy Mikolaj with surgical procedure,” mentioned the emailed response from Teo’s workplace to Barman.

When he learn Australian press experiences describing Teo as “a miracle employee”, Barman was reassured that the much-hyped physician may ship the remedy he was providing.

That very same day, Barman’s buddy arrange a GoFundMe web page to assist with the steep prices for the operation to take away Mikolaj’s DIPG in Singapore.

The crowdfunding web page referred to the tumour as “inoperable”.

“Nevertheless there’s hope. A famend Australian neurosurgeon, Dr Charlie Teo, believes he can efficiently take away the tumour utilizing a pioneering method. With this therapy, Mikolaj’s prognosis could be glorious, and he’ll hopefully reside a protracted, regular life,” learn the crowdfunding web page.

Barman drained his financial savings and his retirement fund, Mikolaj’s faculty helped and associates donated cash for the operation on October 11, 2018. Images taken the evening earlier than the operation confirmed the blissful, energetic boy in his hospital mattress surrounded by vibrant balloons, taking part in along with his toys.

Mikolaj Barman playing with balloons the day before his operation.

Mikolaj Barman taking part in with balloons the day earlier than his operation.Credit score:

His father instructed him, “There shall be a giant struggle tomorrow, there’s one thing inside your mind, one thing inside your head, in order that dangerous issues shall be taken out, and after that you simply’ll be OK once more.”

Barman wiped away tears as he recalled what had been to be amongst his son’s final phrases. Mikolaj instructed his mother and father he was prepared for battle and, punching the balloons, the little boy mentioned, “I’ll struggle like this”.

Teo solely met the younger baby for the primary time as he was being wheeled into the working theatre at Singapore’s Nationwide College Hospital and solely half an hour earlier than the operation, he broke the information to Mikolaj’s mother and father that the tumour was diffuse, that means that it had unfold, and for the primary time he prompt that he could not be capable of take away all of it.

Though the Barmans had been alarmed at this last-minute information, they felt it was too late to again out.

After a 10-hour operation, Teo spent 10 minutes telling the mother and father that he’d eliminated 85 per cent and that it gave the impression to be benign. With that, Teo was gone, and so they by no means noticed him once more.

Nevertheless, after the operation the pathology outcomes revealed that the tumour was not benign. It had the “H3K27M mutation”, which is the defining molecular marker for the devastating DIPG.

In keeping with Souweidane, if a biopsy comes again “in keeping with an H3K27M mutation, my opinion, and I feel the consensus of most neuro-oncology people, goes to be to not resect, to not provide surgical remedy.”

Earlier than surgical procedure, if Teo doubted the 2 earlier diagnoses of a DIPG, he may have executed a biopsy to make sure. However he didn’t, and reasonably than delivering a miracle, Teo left the Barmans with a nightmare. Their as soon as blissful and playful little boy would by no means stroll, speak, or eat on his personal once more.

With the medical prices piling up in Singapore, the Barmans needed to pay $40,000 to rent an air ambulance to fly Mikolaj again to India, the place he languished in intensive take care of months. Mikolaj’s care value almost $250,000 and the remainder of his brief life was spent in a room observing a ceiling, his solely technique of communication was blinking his eyes.

There was no hope. For a DIPG, there isn’t any hope. So why give the false hope within the first place?

Prasanta Barman

Ten months after the catastrophic operation, the inevitable occurred: the aggressive tumour returned and Mikolaj died.

Mikolaj’s MRI scans had been proven to a number of neurosurgeons who instantly recognized the tumour as a DIPG. When instructed that an unnamed surgeon, providing a remedy, had carried out a resection, they had been horrified.

Barman is racked by guilt at what he put his son by means of. “There was no hope. For a DIPG, there isn’t any hope. So why give the false hope within the first place?” he requested.

Bella’s battle

Mikolaj Barman was not the one one. A yr after Mikolaj’s demise, one other household was going through the dire prognosis of a DIPG.

In April 2020, medical doctors at John Hunter Hospital in Newcastle instructed Gene Howard and Sarah Higginbottom that their seven-year-old daughter, Bella, had a DIPG and that there was nothing that could possibly be executed besides to supply radiation as a part of palliative care.

Gene and Sarah Howard with their daughter Bella.

Gene and Sarah Howard with their daughter Bella.Credit score:

Howard refused to just accept that there was no remedy and, in desperation, he turned to the high-profile Charlie Teo.

Teo’s notes after the preliminary session reveal that he “agreed that that is prone to be a DIPG”.

Bella’s grandmother Mariza Howard, who was on the session, recalled Teo telling them there was a tiny probability the scan may be flawed. Teo provided to do a biopsy and, whereas doing that, if there have been elements of the tumour he thought he may take away to purchase Bella extra time, he would.

I used to be just a bit perplexed how an operation that would save somebody’s life [was] contingent on a fee of cash the very subsequent day.

Mark Ramsland, a Howard household buddy

“At this level we had been all in tears as a result of … there was no hope after which we obtained this chance of hope, a physician … on the market providing one thing,” recalled Gene, a tradesman from Shoal Bay.

As a substitute of ready for conclusive biopsy outcomes, Teo needed to function the very subsequent day. The Howards leapt on the probability to increase Bella’s life. Nevertheless, there was a catch. The surgical procedure would value $100,000 and $50,000 needed to be in Teo’s checking account that evening.

“We had been making an attempt to determine the right way to get it ourselves, however even to get a mortgage it takes weeks, even associates which have plenty of fairness – for them to get a mortgage it takes weeks,” mentioned Gene who, in desperation, even tried to promote his kidney.

“I wasn’t ever stopping till we obtained that cash,” he mentioned.

Sarah and Gene Howard in the bedroom of their daughter Bella who died of  DIPG.

Sarah and Gene Howard within the bed room of their daughter Bella who died of DIPG.Credit score:Peter Stoop

Mark Ramsland, a buddy of the Howard household and their solicitor and most cancers survivor himself, was troubled on the haste for the surgical procedure, the absence of an oncologist, and the extraordinary amount of cash that needed to be in Teo’s account that evening.

“I used to be just a bit perplexed at how an operation that would save somebody’s life wanted to be contingent on a fee of cash the very subsequent day,” the solicitor mentioned.

Gene’s boss loaned him the cash and the operation occurred at Prince of Wales Non-public Hospital in Sydney the subsequent day.

Simply how a lot of the tumour Teo eliminated would differ. Instantly after the surgical procedure, Gene Howard was ecstatic when instructed by Teo he’d eliminated 95 per cent of the tumour which, in his opinion, was low-grade and sluggish rising.

The operation report recorded a larger than 50 per cent resection and, in a report dated June 2, 2020, Teo wrote that “naysayers” would say he hadn’t eliminated any.

Consultants on this space instructed the joint investigation that even when 99.9 per cent of the tumour was resected, which might possible end in speedy demise, a resection is pointless because the most cancers has already unfold and it’ll come roaring again.

The most cancers cells “are going to proceed to develop”, Kieran mentioned. “They mainly are going to take over your complete mind as a result of they don’t reply to surgical procedure, they don’t reply to radiation, and so they don’t reply to any at present recognized chemotherapy. Sadly, we don’t remedy youngsters with DIPG.”

Three days after the operation, the pathology outcomes got here again. Bella’s tumour had the H3K27M mutation and the prognosis was a DIPG. However in his report, Teo solid doubt on the validity of the H3K27M mutation as an indicator.

Whereas radiation is the accepted therapy to alleviate the signs, Teo suggested in opposition to this.

In his report, he famous that he had counselled the Howards that “many neuro-oncologists and respected neurosurgeons could be aghast at this course and could be strongly recommending radiotherapy plus or minus chemotherapy” however that Jean [sic] “is absolutely conscious of the 2 utterly totally different choices” and that it was his selection to not have the radiation.

Teo provided the Howards a second operation on the identical value as the primary, however because the Howards had been driving again to Shoal Bay after Bella’s 12-week scan, Teo rang with some shattering information. He instructed Gene to drag over and get out of the automobile.

“Mate, that is actually dangerous. The scan’s come again, it’s grown … in all probability thrice as massive as what it initially was,” Teo instructed him. Sarah mentioned she cried your complete method residence.

Bella deteriorated shortly and required 24-hour care. In January 2021, eight months after prognosis, Bella died surrounded by her devastated household.

Her official reason behind demise was recorded as a Diffuse Intrinsic Pontine Glioma.

In a written response to questions put to Teo about his DIPG operations, a spokesman mentioned: “Diffuse Intrinsic Pontine Glioma (DIPG) /Diffuse Midline Glioma (DMG) is probably the most aggressive childhood mind most cancers. It’s incurable and is actually inoperable. Dr Charlie Teo has by no means operated on a pure DIPG/DMG, and has by no means beneficial surgical procedure on such a tumour.”

Whereas Teo declined a request for an interview with the joint investigation, he instructed The Every day Telegraph on Saturday that the talk round “inoperable” mind stem tumours was an advanced one and “misinformation was rife, even amongst neurosurgeons in Australia and world wide”.

The article additionally said, “Just about each intrinsic main brainstem tumour is labelled as DIPG as a result of ‘there isn’t any actual definition and nobody needs to speak or take into consideration having to function on them’, he mentioned.”

“That’s why all these authorities are saying Teo is working when he shouldn’t. No, they’ve all of it flawed,” Teo instructed the Telegraph.

In August 2021, seven months after Bella Howard died, the NSW Medical Council was so involved about Teo’s operations on mind stem tumours, together with a DIPG, that they positioned restrictions on his practising certificates.

In November 2021, Healthscope, which runs 41 personal hospitals, withdrew Teo’s accreditation at Prince of Wales Non-public Hospital, the place he has labored for years.

In September, Teo was resulting from face a two-day disciplinary listening to after a prolonged investigation by the Well being Care Complaints Fee. Nevertheless, it was postponed to a date to be mounted as one of many listening to days turned a public vacation as a result of demise of the Queen.

Fairly die than go blind

Joe Leslie, a Brisbane engineer, found he had a slow-growing mind tumour in 1996.

After a number of operations over time, in 2018 medical doctors instructed him that there was nothing extra they might do to deal with his mind tumour and estimated he had two years to reside.

Having heard of the famend mind surgeon, Joe and his spouse, Kathy, a nurse, sought a second opinion.

On the session, Teo assured the Leslies that he may take away the tumour. He dismissed considerations raised by the Queensland medical doctors that due to the place of the tumour, any try and take away it might go away him blind.

Kathy Leslie mentioned Teo instructed them to not fear, it was unlikely that that may occur as he’d been doing these surgical procedures “for ages” and he was “method higher” than different surgeons.

She recalled Teo saying: “the opposite surgeons had been jealous of him as a result of what he may obtain and … he was loads higher than what they had been saying and he may obtain nice issues”.

For Joe, the one factor he impressed upon Teo was that he didn’t wish to go blind. “He would reasonably have handed away than go blind, that was his massive factor,” his spouse mentioned.

Kathy recalled being anxious concerning the determination to proceed. “It wasn’t my life. It was Joe’s determination as a result of it was his life, however my intestine feeling was telling me possibly we should always simply go off and … take pleasure in what we’ve obtained.”

Teo assured them Joe could be again at work very quickly.

Having paid Teo $35,000 from their retirement financial savings, Joe’s surgical procedure was scheduled to start out at 3pm. On account of problems with a earlier operation, his surgical procedure didn’t begin till 9pm and didn’t end till 5am the subsequent day.

Kathy was anxious concerning the surgical procedure beginning so late at evening. She instructed the joint investigation she was instructed Teo needed to fly to Singapore the subsequent day, so it needed to be executed then. “What was so vital that he needed to get on that airplane and go, reasonably than giving high quality of care?” she posed.

Following the surgical procedure, Joe was blind. And what Kathy Leslie couldn’t have recognized was that Teo was jetting off to Singapore to function unsuccessfully on one other affected person, four-year-old Mikolaj Barman.

There have been critical post-operative problems, together with cerebrospinal fluid (CSF) leaking out of his nostril. Joe spent six weeks out and in of hospital in Sydney earlier than returning to Brisbane, the place he spent months in a public hospital.

Joe Leslie misplaced greater than his eyesight. The 65-year-old is brain-damaged, confused and requires 24-hour care. He didn’t have the capability to supply consent to be interviewed.

“The life he lives now, the outdated Joe, the Joe that we knew, could be horrified what his life has come to,” his spouse mentioned.

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Kathy Leslie, who has had to return to work to help the household, is indignant at what she believes is the false hope Teo gave them.

“Docs take an oath of ‘Do no hurt’. This has executed extra hurt than good: emotionally, bodily and mentally. The pressure you placed on households while you do operations like this can be a lot greater than when you would lose somebody.

“Sure, you probably did the operation. Sure, you took the tumour, however what high quality of life did you permit him with?” Kathy mentioned.

She needed to know if Teo would wish to reside the nightmare that Joe resides. “That’s what I would love him to say … Is the standard of life you need for your self? Why do you do it to different individuals then?″⁣

Are you aware extra? E-mail: [email protected]

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