how neurosurgeon left households with a horrible value to pay

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 youngsters who have been left in a vegetative state, have spoken out concerning the dreadful value they paid for the hope Dr Teo offered them.

“There must 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 final result of the futile surgical procedure Teo carried out on his solely little one.

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

He and his spouse Sangeeta have 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” they usually have 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 model, particularly in circumstances different surgeons deem inoperable, and he has many grateful sufferers who laud his successes.

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

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

On September 27, 2018, Barman was elated when what appeared like a lifeline was supplied. “Dr Teo has reviewed the scans and recommended pressing surgical procedure, he mentioned there’s a very excessive chance of treatment 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 must be healing as we should always be capable to take away your entire factor. Because of this prognosis could be wonderful … He ought to hopefully stay a protracted and joyful life.”

Nonetheless, there is no such thing as a probability of a contented ending with a DIPG, essentially the most deadly of all childhood cancers. There isn’t a treatment and the typical 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-about 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 dying both from the surgical procedure or your tumour”.

Requested if there was any medical or analysis knowledge anyplace on this planet that reveals a profit from resecting DIPGs, one among 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 twenty years. He mentioned surgical procedure is just not 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 must 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 price $150,000 at Prince of Wales Personal 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 “be sure that concerning the certainty of the operation” as a result of the opinion of the 2 Indian neurosurgeons was that “there is no such thing as a therapy for one of these tumour. It is a very uncommon. And as soon as detected, we’ve acquired solely eight to 12 months in our hand,” Barman recalled.

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

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

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

Barman drained his financial savings and his retirement fund, Mikolaj’s faculty helped and pals donated cash for the operation on October 11, 2018. Images taken the night time earlier than the operation confirmed the joyful, energetic boy in his hospital mattress surrounded by vibrant balloons, enjoying together with his toys.

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

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

Teo solely met the younger little one 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 dad and mom that the tumour was diffuse, that means that it had unfold, and for the primary time he recommended that he might not be capable to take away all of it.

Though the Barmans have 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 dad and mom that he’d eliminated 85 per cent and that it gave the impression to be benign. With that, Teo was gone, they usually by no means noticed him once more.

Nonetheless, 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 response to Souweidane, if a biopsy comes again “in step with an H3K27M mutation, my opinion, and I believe 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 finished a biopsy to make certain. However he didn’t, and slightly than delivering a miracle, Teo left the Barmans with a nightmare. Their as soon as joyful 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 price almost $250,000 and the remainder of his quick life was spent in a room gazing a ceiling, his solely technique of communication was blinking his eyes.

There was no hope. For a DIPG, there is no such thing as a 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 have been proven to a number of neurosurgeons who instantly recognized the tumour as a DIPG. When instructed that an unnamed surgeon, providing a treatment, had carried out a resection, they have been horrified.

Barman is racked by guilt at what he put his son via. “There was no hope. For a DIPG, there is no such thing as a 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 dying, one other household was dealing with 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 may very well be finished besides to offer radiation as a part of palliative care.

Howard refused to just accept that there was no treatment 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 could be flawed. Teo supplied 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 might 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 have been all in tears as a result of … there was no hope after which we acquired this risk of hope, a physician … on the market providing one thing,” recalled Gene, a tradesman from Shoal Bay.

As an alternative 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. Nonetheless, there was a catch. The surgical procedure would price $100,000 and $50,000 needed to be in Teo’s checking account that night time.

“We have been making an attempt to determine how one can get it ourselves, however even to get a mortgage it takes weeks, even pals 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 acquired that cash,” he mentioned.

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 sum of money that needed to be in Teo’s account that night time.

“I used to be just a bit perplexed at how an operation that might 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 Personal Hospital in Sydney the following 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 gradual rising.

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

Specialists on this space instructed the joint investigation that even when 99.9 per cent of the tumour was resected, which might doubtless end in rapid dying, 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 principally are going to take over your entire mind as a result of they don’t reply to surgical procedure, they don’t reply to radiation, they usually don’t reply to any at present recognized chemotherapy. Sadly, we don’t treatment children 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 forged 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 totally conscious of the 2 fully totally different choices” and that it was his alternative to not have the radiation.

Teo supplied the Howards a second operation on the identical value as the primary, however because the Howards have 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 unhealthy. The scan’s come again, it’s grown … most likely 3 times as large as what it initially was,” Teo instructed him. Sarah mentioned she cried your entire means dwelling.

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

Her official reason behind dying 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 essentially the most aggressive childhood mind most cancers. It’s incurable and is really inoperable. Dr Charlie Teo has by no means operated on a pure DIPG/DMG, and has by no means really useful surgical procedure on such a tumour.”

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

The article additionally acknowledged, “Nearly each intrinsic main brainstem tumour is labelled as DIPG as a result of ‘there is no such thing as a 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 have 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 Personal 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. Nonetheless, it was postponed to a date to be mounted as one of many listening to days turned a public vacation because of the dying of the Queen.

Moderately die than go blind

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

After a number of operations through the years, 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 stay.

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 issues raised by the Queensland medical doctors that due to the place of the tumour, any try to take away it might depart 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 “means higher” than different surgeons.

She recalled Teo saying: “the opposite surgeons have been jealous of him as a result of what he may obtain and … he was so much higher than what they have 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 slightly have handed away than go blind, that was his large factor,” his spouse mentioned.

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

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. As a consequence of issues with a earlier operation, his surgical procedure didn’t begin till 9pm and didn’t end till 5am the following day.

Kathy was frightened concerning the surgical procedure beginning so late at night time. She instructed the joint investigation she was instructed Teo needed to fly to Singapore the following day, so it needed to be finished then. “What was so vital that he needed to get on that airplane and go, slightly 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 issues, 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 offer 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 assist the household, is indignant at what she believes is the false hope Teo gave them.

“Medical doctors take an oath of ‘Do no hurt’. This has finished 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 in the event 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 stay 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 folks then?″⁣

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