“TELL MY MUM I’m all right”


Sunday Herald Sun - Stellar - - Joe Hildebrand - Words by GRANT MCARTHUR

You don’t get braver than Zac Bos and Char­lie Harms. They are the youngest Aus­tralians to stay awake dur­ing their own brain surg­eries so they could guide spe­cial­ists through the com­plex net­works in­side their heads.

Char­lie, 14, even takes one of the world’s lead­ing neu­ro­sur­geons to task about who’s the best com­pan­ion in Doc­tor Who – de­spite the fact she is cut­ting deep into his brain at the time.

Three weeks later, Zac, 13, be­comes the youngest Aus­tralian to face this most del­i­cate of all surg­eries. Again the di­rec­tor of neu­ro­surgery, Dr Wir­ginia Maixner – who suc­cess­fully op­er­ated on con­joined twins Tr­ishna and Kr­ishna in 2009 – has to is­sue a mid-oper­a­tion warn­ing when he al­most ruins the plot of a car­toon se­ries they both watch.

It’s this breath­tak­ing mix of skills, the abil­ity to be in their pa­tients’ heads both phys­i­cally and metaphor­i­cally at the same time, that means the team from Melbourne’s The Royal Chil­dren’s Hos­pi­tal can go where oth­ers dare not.

Char­lie and Zac’s cases are re­mark­ably sim­i­lar. Each has mis­fir­ing con­nec­tions buried in the ar­eas of brain re­spon­si­ble for speech, and attempting to re­move them with con­ven­tional surgery is too risky for most hos­pi­tals. How­ever, after months of prepa­ra­tion across two states, on July 19 and then Au­gust 9, they each come to Melbourne for turns in theatre 14. Here the neu­ro­log­i­cal team has per­formed 10 “awake surg­eries” over the past decade, though the process has only pre­vi­ously been con­sid­ered for pa­tients over the age of 16.

With Char­lie’s seizures in­creas­ing to the point where he vi­o­lently col­lapses two or three times a day, he can­not go to school or even cross the street in his home­town of Yep­poon, Queensland, for fear he’ll have a seizure and be run over.

Med­i­ca­tion needed to sup­press his symp­toms had risen to four times the max­i­mum adult dose, which is sim­ply not safe. “When he was seven, they said it came from this part of the brain and they could not op­er­ate,” says Char­lie’s mum, Maria. “We went back to Bris­bane last year [for] more scans... They said they couldn’t do it in Bris­bane, but would we con­sider [awake] surgery? We jumped at the chance be­cause he wasn’t hav­ing much of a life as it was. So we came down to [The Royal Chil­dren’s Hos­pi­tal] and they said, ‘We want to help him. If we [can’t], we don’t think there’s any­one else who can.’”

Zac’s first tonic-clonic seizure came in 2013, when cold wa­ter shocked him in the shower at his Bris­bane home, pre­sent­ing like a mini stroke that ren­dered his body frozen. Since then, sur­prises as sim­ple as a tap on the shoul­der or hav­ing a drop of sweat drip have caused up to three seizures a day.

For a year lead­ing up to the surgery, neu­rol­o­gists used high-tech scan­ners to map the boys’ brains and build vir­tual 3D mod­els. From this, they can iden­tify the two most im­por­tant im­ages. One shows parts of the pa­tient’s brain ac­tive when they are talk­ing – ar­eas sur­geons must not

dam­age. The sec­ond shows the ar­eas that are ac­tive dur­ing a seizure – parts they must re­move. When viewed to­gether the prob­lem is ob­vi­ous – good and bad sec­tions of brain over­lap, and the slight­est slip could rob Char­lie and Zac of their abil­ity to speak or think. This is why the boys must be kept awake to en­dure what few adults could stom­ach.

While the im­ages pro­vide a rough map through Char­lie and Zac’s brains, it is only by lis­ten­ing to them speak as each sec­tion of brain is op­er­ated on that sur­geons re­ally know whether that area is needed or can be tun­nelled through.

After two huge seizures, Char­lie is with­drawn and not in great form to try to re­main alert as the marathon 12-hour process be­gins at 7am.

When Zac’s turn comes around, his only con­cern is hunger and he spends his wait­ing time tak­ing fam­ily self­ies.

The ab­sence of pain sen­sors in the brain make it pos­si­ble to op­er­ate on an awake pa­tient, but su­per­fi­cial re­lief is needed so a hole can be cut into the boys’ skulls. Light se­da­tion is also used to ease anx­i­ety, how­ever the re­lief comes from the team’s abil­ity to con­stantly re­as­sure and con­nect with the boys.

By 1pm, dur­ing both op­er­a­tions, sec­tions of the boys’ skulls are re­moved and their brains are open to the world. Char­lie asks for a mes­sage to be taken to his mum: “Tell her I’m all right.” In Zac’s case, it’s time for Stel­lar’s pho­tog­ra­pher to make good on a prom­ise and take a pic­ture of Zac’s brain for his col­lec­tion. Maixner cleans away any tis­sue for the snap, declar­ing, “You have a hand­some brain.” Neu­rol­o­gist Dr Si­mon Har­vey also takes a photo to com­pare the vir­tual MRI scans to re­al­ity. Now, with a firmer bat­tle plan, the most vi­tal stage be­gins.

Speech pathol­o­gist Rachel Kerr sits next to the pa­tients and be­gins a long process of read­ing sim­ple phrases the boys must try to re­peat. “It’s warm, let’s go swim­ming,” starts Kerr. “It’s warm, let’s go swim­ming,” says Char­lie.

As each line is re­peated, a click­ing sound can be heard from in­side the pa­tient’s head, where the spe­cial­ists me­thod­i­cally probe each sec­tion of the brain with an elec­tri­cal pulse. They lis­ten in­tently; if they strike an area where the pa­tient slurs their words, sounds con­fused, stam­mers or can’t re­ply at all, that part is deemed vi­tal and must be kept in­tact. If the pa­tient con­tin­ues talk­ing freely, that sec­tion is non-vi­tal and can be tun­nelled through.

Char­lie’s ex­haus­tion pro­longs the process, but the re­sults re­in­force the brain-scan find­ings: a fin­ger-shaped slither of brain is clear of ac­tiv­ity and of­fers a win­dow to the seizure-caus­ing re­gion, 3cm be­low. As Char­lie nods off to sleep, a mi­cro­scope is placed above his head and Maixner cuts a slit the width of two fin­gers.

“You won’t find many neu­ro­sur­geons who [can] op­er­ate down here and do it com­fort­ably. It’s a scary part of the brain; a dif­fi­cult part to ac­cess,” says Har­vey. “[They] might go there to take bad tu­mours out in some­body older, but here we are talk­ing about a 14-year-old boy who has a per­fectly good brain if we can stop his seizures.”

When Zac’s brain is probed, the whole oper­a­tion is turned on its head. Ar­eas re­vealed in scans as “de­void of any­thing” leave him strug­gling to speak, and the planned path is blocked. Prob­ing an­other area then causes Zac to have a seizure.

Re­view­ing the re­sults, two al­ter­na­tive routes emerge: one through an area Maixner calls “the mush­room”, an­other through “the funny area at the back”. As the plan firms, the probes are turned back on to in­duce a seizure. When it oc­curs, the plan is cer­tain, and Maixner tun­nels through the mush­room-shaped area so it can be re­moved along the way to the main prob­lem, 3.5cm be­low.

WHILE BOTH BOYS suf­fered severe headaches and speech dif­fi­cul­ties after their surg­eries, a fort­night later the re­sults are stun­ning: nei­ther has had a seizure and both are con­sid­ered cured.

A year after Bris­bane spe­cial­ists first got in touch with the neu­rol­o­gists in Melbourne to see if they could help Zac, his mother, Vicki, is over­whelmed at his trans­for­ma­tion. “As soon as they said it was a pos­si­bil­ity, we jumped at the chance,” she says. “Es­sen­tially, they were say­ing, ‘We can cure your son… we can give him a life.’ I used to worry ev­ery lit­tle thing would trig­ger a seizure. Now we can even come up be­hind him and slap him on the back and it’s fine.”

It’s the sim­ple plea­sures Zac is most look­ing for­ward to. “I’m des­per­ate to do something which may seem quite mi­nor to oth­ers – can­non­balling into a pool,” he says. “I don’t know what the future is, I guess I’ll see what’s ahead.”


NEW AWAK­EN­ING (clock­wise from far left) Neu­ro­sur­geon Wir­ginia Maixner; Maixner op­er­ates on Char­lie; Zac is kept awake dur­ing his surgery; Zac to­day with his par­ents, Michael and Vicki.

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