Enzo Cornejo’s heart surgery a world-first after collaboration between Flinders Medical Centre and WCH
When Enzo Cornejo’s heart started failing, doctors feared he might not survive. But groundbreaking surgery has given the Adelaide Crows No.1 fan a second chance at life.
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Enzo Cornejo tells the anaesthetists he wants to know exactly when they are going to put him to sleep. There’s something important he needs to tell his mum before he goes under.
He’s in the cath lab at Flinders Medical Centre, about to undergo heart surgery that everyone is hoping will save his life. Hope, though, is the key word here. No one really knows how the next few hours are going to pan out. There’s a chance he won’t survive.
This type of operation has never been done before on a patient like Enzo – a 13-year-old with a failing heart and the rare premature and rapid ageing disease called progeria.
A team of nearly 20 specialists, nurses and technicians are assembled in a catheter intervention laboratory (aka cath lab) deep in the rabbit warren that is Flinders Private Hospital, hoping they can save his life.
The team’s ultimate goal is to install a lifesaving transcatheter aortic valve implantation, more commonly known as a TAVI, into Enzo’s heart.
It’s an operation almost exclusively performed on adults, because heart conditions such as the aortic stenosis (a narrowing of the aortic valve that restricts blood flow from the heart to the body) plaguing Enzo are more typically reserved for those in their 70s or 80s.
But Enzo is far from a typical teenager. He is the only known Australian with progeria, a rare genetic condition that affects one in 20 million children. Children with progeria age up to 10 times faster than their peers, meaning Enzo’s heart has more in common with an octogenarian than one of his year 8 classmates at Sacred Heart College.
He is also tiny. Another symptom of progeria is growth failure and reduced weight gain and Enzo tips the scales around the 20kg mark.
So the complexities of the anaesthetics and surgery about to take place are immense.
The risks are huge and there’s a very real possibility Enzo might draw his last breath in the next few hours.
But the surgery is also Enzo’s only route back to the life he loves. A life of family, football, friends, fishing, school, drama, drums, chess, YouTube, video games and a protective two-year-old cavoodle called Jasper.
Without this surgery, his prognosis is grim, and time is running out. So he and his parents Catherina Llontop and Percy Cornejo have agreed with his doctors’ suggestion to have a crack at installing a TAVI to replace his clogged aortic valve.
It’s an operation only possible because of a unique collaboration between Flinders and the Women’s and Children’s Hospital – but more on that later.
For the time being, all Enzo knows is that the last thing he needs to do before he falls asleep is to tell his mum something. It’s something important.
“Mum, I love you,” he says.
ALARM BELLS
“I love you too,” Catherina replies. “But you just have to come back to me. Keep in your mind that you just have to come back to mum.”
The drugs then take over, Enzo loses consciousness and his fate is in the hands of a team of specialists about to embark on a world-first operation.
But before we dive into that, we need to turn back the clock to Friday, March 28, this year. It’s sports day at Sacred Heart College.
Enzo, a member of the school’s green Montagne House, is hence decked out in a Boston Celtics singlet. He participates in events including the potato sack race, tug of war and a wheelchair run and is a member of the school drum line that performs on the oval.
He leaves school for a prearranged lung test at the Women’s and Children’s Hospital in the city at 1pm, after which his mum takes him to the Crows Shop in West Lakes.
It’s a regular destination for one of the Adelaide Football Club’s most passionate fans, and Enzo is keen to buy a Gather Round guernsey to wear at the club’s game against Geelong in a couple of weeks’ time. Guernsey secured, they head back to their Brighton home and that night take Jasper to puppy training at 7pm. Halfway through the lesson, though, Enzo tells his mum he has chest pain, and alarm bells start ringing.
Heart failure is the most common cause of death for children with progeria and doctors have been monitoring Enzo’s heart since he was three. He was diagnosed with aortic stenosis (calcification and narrowing of the valves that regulate blood to and from the heart) in October, 2022 and the condition has since deteriorated, hence the family is on high alert to the dangers of chest pain.
MANY HURDLES
So they take him straight back to the Women’s and Children’s Hospital where he spends the next week undergoing various tests.
He misses the Crows round 3 clash against North Melbourne on March 30 just down the road at Adelaide Oval but watches the win on TV with his Sacred Heart tutor Anton Vassallo.
By Thursday, April 3, Enzo, Catherina and Percy are preparing to head home the next day, but things take a turn for the worse and on the morning of April 4 he is moved to the hospital’s pediatric intensive care unit where staff start treating him for pneumonia.
That’s where cardiac pediatric intensivist doctor Krista Mos enters the story.
Mos, who describes her job as “standing between children and death”, looks at Enzo’s heart ultrasound (known as an echocardiogram) and chest X-rays and determines heart failure, rather than a chest infection, is posing the greatest threat to his life.
It’s an important diagnosis that allows her to start formulating a treatment plan – albeit one that has never before been done on a patient as young and small as Enzo.
The only thing that will save Enzo, she figures, is a TAVI to replace his blocked aortic valve. She knows the implant, a valve mounted on a flexible, expandable metal frame, is installed routinely just down the road at Flinders … but on patients decades older and many kilograms heavier than Enzo.
She also knows there are many hurdles to jump before such a procedure can take place because it will require collaboration between pediatric and adult medical staff rarely seen before and only possible because of the close ties within the medical community here in SA.
ENZO’S A FIGHTER
She doesn’t want to raise the hopes of Enzo or his parents and tells them there is little more doctors can do and that they should prepare themselves for the worst.
“But Enzo is a fighter,” Catherina tells her. “You may think he is not going to improve … but whatever medicine they are giving to him, he is going to fight.”
And fight he does. After receiving some respiratory support and intravenous medicines in intensive care, his condition stabilises by the Saturday morning and by Sunday he’s well enough to receive a visit from some of his heroes at The Crows.
Riley Thilthorpe, Jake Soligo, Josh Rachele and Ben Keays drop in to pass on their best wishes and discuss the club’s heart-stopping (pardon the pun) one-point loss on the Gold Coast the previous day. They stay for a couple of hours and invite him to the Gather Round clash against the Cats. Rachele has missed the Gold Coast match because of injury but Thilthorpe, Soligo and Keays all feature in a loss which has many fans, including Enzo, up in arms after umpires failed to award a mark to star Izak Rankine in the dying seconds.
Their company, plus visits from other friends (bearing gifts of hundreds of AFL footy cards) and pooch Jasper give Enzo a much-needed boost as he and his family await news about the next stage of his treatment.
They don’t find out until later that night that Mos has already set into motion a plan of action that will ultimately save Enzo’s life.
TEAM EFFORT
Doctors at the Women’s and Children’s Hospital, understandably, have little experience in dealing with coronary arteries, stents or TAVIs, because heart disease is primarily an ailment for the elderly. And the medical team at Flinders has little expertise dealing with tiny humans such as Enzo, because that is a task primarily left to the pediatric experts at WCH.
Hence Mos knows only a team effort can save Enzo and she reaches out to cardiothoracic surgeon Gareth Crouch, who has ties at both WCH and Flinders and agrees a TAVI is an option worth exploring.
Crouch calls Flinders radiologist Dr Jean Engela who concurs and the pair reach out to interventional cardiologist Ajay Sinhal – an internationally renowned expert in the procedure.
Sinhal has been implanting TAVIs at Flinders since 2008 and is in Los Angeles at a meeting at TAVI manufacturer Edwards Lifesciences when he gets a middle-of-the-night message about Enzo.
The idea of attempting to place a TAVI into Enzo’s tiny body doesn’t get a ringing endorsement from his peers in LA, but Sinhal agrees it’s worth looking into.
The biggest hurdle to their plan is basic physics. TAVIs are installed via a small incision in the groin, through a sheath inserted in the patient’s femoral artery en route to the top of the heart.
The TAVIs are available in a range of sizes and the operation cannot go ahead if they can’t find one small enough to fit Enzo’s heart. Companies such as Edwards, of course, only manufacture products to suit their market and their market does not typically include 20kg 13-year-olds.
RISKS ARE HIGH
Scans of Enzo’s heart at the Women’s and Children’s Hospital indicate the smallest TAVI will still be too large to fit into his aortic valve but the doctors won’t know for sure until they can get him to Flinders for a more thorough CT scan.
Over the course of the weekend, as Sinhal prepares to return home from LA, other doctors including Flinders intensive care boss Steven Galluccio and the governance boards of both hospitals are brought into the loop.
Critically, no one rules a line through the idea – even though cardiologists at children’s hospitals in both Melbourne and Boston have both expressed doubts that heart surgery is an option for Enzo.
There have been few other TAVI operations for progeria patients, and in each of these the surgery has been performed apically – i.e. through the chest. But the doctors know that coming in through the chest is not an option for Enzo – primarily because Edwards has since stopped making the equipment for similar apical procedures.
Conversations discussing the pros and cons of Enzo’s TAVI operation go on between the doctors and the two hospitals all weekend and it’s not until the Sunday night, when they receive a preliminary report suggesting it is a real possibility, that Mos and Crouch raise the prospect with Enzo and his parents.
Mos is clear there are many steps in theoperation which might prove fatal for Enzo, but there is a “decent chance” it will be successful and the result will be many more years of quality life.
Perhaps conservatively, she gives the surgery a 20 per cent chance of success.
Sinhal is more optimistic. He suggests the chances of success are as high as 70 per cent.
Either way, the risks are high and real and going ahead is a decision that can only come from the family.
SURGERY’S GREEN LIGHT
Catherina and Percy jump at the idea.
“For us, a TAVI was always our first option from the beginning (since Enzo was first diagnosed with stenosis) but they always said it was not an option for kids with progeria,” Catherina says.
“So when they say there is someone that is willing to do it, if the TAVI fits his heart, we said yes because we knew that his heart was getting very sick. And Enzo loves his life.”
So begins two days of preparation and governance meetings at the highest levels of both hospitals for a Wednesday surgery that will only go ahead if CT scans reveal Enzo’s aortic valve is large enough to cope with the smallest TAVI they can get their hands on.
A second scan at WCH on the Monday is inconclusive and by Tuesday morning everyone agrees he needs to transfer to Flinders for a more thorough CT scan. That scan shows the procedure might be possible. The risks will be high, because Enzo’s arteries are so small, but there is a chance of success.
By late Tuesday afternoon the procedure gets the green light.
Catherina and Percy meet anaesthetist Kelly Bratkovic (the wife of Enzo’s metabolic physician Drago Bratkovic) who runs through the delicate balance and challenges she will face.
They also meet Sinhal for the first time, who informs them that he will also need to insert two stents in Enzo’s heart because his right and left coronary arteries are 99 per cent blocked.
PLEASE PRAY FOR US
Catherina and Percy ring their church leaders, school officials and friends (including a close group of fellow progeria parents in the US) and ask them to pray for Enzo and his doctors.
The next day a school assembly at Sacred Heart and a special mass at Glenelg’s Our Lady of Victories’ Catholic Church do just that.
By 7am on Wednesday, April 9, Enzo is ready for surgery. He says goodbye to Percy and heads into the cath lab of Flinders Private Hospital with Catherina by his side.
He’s a veteran of many procedures by now and continues his tradition of taking his trusty Crows hat and blanket into the operating room.
Catherina leaves after Enzo falls asleep and joins Percy in a neighbouring room where they sit with WCH cardiologist Ida Whiteman, who updates them with news from the surgery.
Inside the cath lab, the team includes Mos, Crouch, Bratkovic, Edwards representative Niki Nasinki and vascular surgeon Thavenesh Ramachandran, who plays a key role in inserting the vascular sheaths Sinhal uses as a conduit to transport the stents and TAVI from Enzo’s groin to his heart.
After three and a half hours, the team has successfully installed the stents in Enzo’s right and left coronary arteries but things become complicated when the TAVI becomes stuck in a sheath because the surrounding artery is too tight.
It’s the first time in hundreds of procedures Sinhal has had this problem and is a reflection of both the minute size of Enzo’s arteries and the complexity of the operation being attempted.
The team has to remove both the sheath and the TAVI and have a second attempt, this time using stents. This causes complications and blood loss but they are ultimately successful and, six hours after the operation started, the prayers of hundreds of Enzo’s family and friends are answered when the TAVI is in place.
LONG ROAD BACK
He stays in Flinders overnight but Mos is keen to get him back to the WCH, where the staff are more accustomed to treating critically ill pediatric patients.
Catherina describes the 15-minute trip from Flinders on that Thursday morning as “the longest drive of my life”.
She watches the Crows’ Gather Round game against Geelong that night on her iPad but turns it off when they lose.
Enzo is still asleep, but she doesn’t tell him the result just in case – there’s no point bothering him with negative news.
It’s another six days before Enzo regains consciousness. The contrast dye used in the CT scans causes his kidneys to fail and that affects his lung function.
There are other complications related to the blood loss during the operation but on April 21, 17 days after entering the WCH’s intensive care unit, he drives his wheelchair out into a regular ward. Enzo remains in hospital until April 30. The Crows players send multiple messages of support.
One of his favourites is from Crows veteran Taylor Walker and his fellow forwards while he is still in intensive care.
“G’day Enzo, it’s Tex, I’ve got all the forwards here, in the best room at the footy club,” Walker says in the video.
“We just want to say we’re thinking of you, bud … we love ya …”
Illness has forced him to miss five weeks of school but from May 6 Enzo gradually reintegrates himself into Sacred Heart.
One of the family’s favourite memories of his recovery is on June 5, when cardiologist Ida Whiteman tells Enzo he is well enough to stop the twice daily injections he has been receiving and gives him the thumbs up to attend the Crows game against the Brisbane Lions at Adelaide Oval the following night.
ENZO SINGS THE SONG
The Friday night blockbuster is the first game Enzo has attended since round 1 and the home team wins by five points in a wet-weather classic hailed as its most important result under Matthew Nicks and one that cements the club as a genuine top four contender.
Enzo, dressed head-to-toe in Crows paraphernalia and wearing a guernsey with Walker’s No.13 on the back, is invited into the rooms after the game where he chats earnestly with Thilthorpe and joins the players in their victory song huddle.
For Thilthorpe and his teammates, it’s a special moment.
“It was awesome to see him again,” the star forward says.
“We got him in the circle to sing the song which was awesome. And yeah it was the same old Enzo, you can’t even tell anything’s wrong with him.
“He’s so positive and always up for a good chat. We loved having him back in the room. He was a ball of energy.”
Thilthorpe reckons he hardly gets a word in whenever he speaks with Enzo, who often sends the team “pump-up” pregame video messages that both motivate the players and also keep them grounded.
“If there are two things he’s good at, it’s supporting the Crows and talking – he’s a great talker. All the boys get around him – we love him.
“We’re all behind him, and hopefully we’ll get him out to a few more games and around the club a bit more. We’re just hoping all the best for him – that he stays healthy and we can get a few wins for him to keep him happy.
“Footy’s obviously very important to all of us, but it’s not the end of the world when you put it in perspective.”
Enzo is bullish about the team’s chances of progressing deep into finals – he has a feeling they might even win the flag.
There’s still a long way to go, but his parents have promised to take him to an interstate final.
YOU SAVED MY LIFE
Enzo, his parents, Mos and Sinhal reunite in the Adelaide parklands for an SAWeekend photoshoot nearly three months after his lifesaving surgery.
For the doctors, Enzo’s story is a chance to tell the world about a remarkable collaboration between pediatric and adult hospitals which could only happen because of the close ties between cardiac specialists here in SA.
Mos says Enzo and his family set a great example of how to make the most out of life despite significant challenges and they inspired the medical staff at both Flinders and the WCH to do the same.
“I’m proud of that and I think that’s what we want to advertise, that South Australia has great health networks and we can actually do extraordinary things, especially with increased collaboration and going forward,” she says. “I feel intense gratitude with the forward thinking here between SALHN (SA Local Health Network) and WCHN (Women’s and Children’s Health Network).
“I’m personally incredibly relieved it all went well and that people had faith in me to offer this up and say oh you know maybe we should do this … I felt a huge burden of responsibility.”
Sinhal shares her pride. They have detailed the procedure for publication in medical journals in the hope that others can follow in their footsteps.
“I’m just proud of the whole team, that everybody did their job so well and put their time in and effort in,” he says. “It is a great outcome for somebody who everybody thought may not get through. So, basically, very satisfied, very happy and very proud.”
Back home in their modest Brighton home, the life of Enzo and his family has returned to something nearing the old normal.
Catherina and Percy both work full time, but their son is at the centre of everything they do. He has a growing collection of Crows merch, including scarfs, hats, guernseys and a bobblehead of Walker.
There is a treadmill in the loungeroom he now walks on twice a day to keep his reconditioned heart as fit as possible and get him in shape for the City-Bay fun run, which he enters every year.
He’s also promised to increase his vegetable uptake and improve his diet – but there’s no doubt Vegemite, his favourite, will remain a staple.
Mum Catherina describes his operation as a miracle.
“I said to Ajay the night before the operation that Enzo is a fighter, and he will do anything to get through this,” she says.
“I think he amazed the doctors with how strong he was … It has been a roller coaster but with a very good ending.”
She is, unsurprisingly, full of praise for the team of doctors willing to be brave enough to take a risk when a positive outcome was far from assured.
But the last words in this story must go to Enzo, who has a simple message for Mos, Sinhal and the team of doctors who came together back in April.
“Thank you for saving my life,” he says.
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Originally published as Enzo Cornejo’s heart surgery a world-first after collaboration between Flinders Medical Centre and WCH
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