Jo Gaeta flew to Canada for a life-restoring heart procedure, after being declined surgery for a leaky valve that took her breath and ability to walk beyond the letterbox. Nicholas Jones investigates and finds thousands of deaths every year could be prevented by a better approach to heart health.
Blood leaked the wrong way in Jo Gaeta’s heart, taking her breath and strength.
Cardiologists delivered the same grim verdict: open heart surgery on the retiree’s leaky valve was too risky, and there was little else that could be done.
Her son, Tony Gaeta, spent hundreds of obsessive hours reading research, watching medical YouTube videos and contacting overseas doctors.
Just in time, he connected with a Canadian specialist who had given similar patients an artificial heart valve still in trial phases.
The Gaetas scraped together the money needed, and in June Tony and his brother flew with their mum from Wellington to Toronto.
The procedure - in which the new valve system was placed by a catheter (flexible tube) inserted through a blood vessel in the groin, and threaded to her heart - was a success.
“I was holding her hand going in, and she was ice cold - she had no circulation,” Tony says.
“In recovery, she said, ‘Check out my hands’. The colour had returned. They were warm.”
Jo’s energy returned, replacing the terrible throbbing in her neck and feeling of being choked.
“It’s like I had a tight elastic band around me, and all of a sudden it was cut,” she says.
“I feel like a different person. I feel normal.”
The family are telling their story to let others know about the treatment, and in the hope it will speed its availability in New Zealand.
They spent $140,000, much of which was borrowed.
“No one knew what to do,” Tony says of their search for help.
“We went to the cardiologists and they essentially said, ‘Nup, that’s it, you stay on water pills until heart failure.’”
‘I couldn’t even make my bed’
The Gaetas’ roots to Wellington’s coastal Island Bay reach to 1926, when Jo’s father arrived from Sorrento, Italy, and worked as a fisherman in Cook Strait.
Her own husband, Salvi, traced the same path to the suburb known as “Little Italy” when he moved to New Zealand aged 18.
He and Jo ran a tailoring business, Europe Modes Tailoring, in neighbouring Berhampore while raising their three children, Mike, Ange and Tony.
Mike later joined the family business, Ange opened a hair salon next door, and Tony established his karate dojo one shopfront down.
Europe Modes shut when Salvi retired at the age of 79, but Hair by Ange (36 years and counting) and World Marudao Karate (16 years) remain Adelaide Rd fixtures.
Jo and Salvi’s retired bliss - their children and eight grandkids live nearby, and get-togethers are frequent - was upended by her heart disease.
Symptoms struck around mid-2021; she felt constantly puffed, had palpitations and a sensation of pulsing and choking around her neck.
Sleep became impossible, and she could barely walk to the letter box.
“It just got worse and worse,” says Jo, 81. “I ended up at hospital one morning because I couldn’t even make my bed.”
About 5kg of fluid was drained from her body. Her cardiologist later diagnosed the problem: tricuspid valve regurgitation (TR).
When her right ventricle - one of four heart chambers - pumped blood, a valve that didn’t close properly allowed some to leak backwards into another chamber, the right atrium.
(Heart valves open and shut in time with the pumping action of the heart’s chambers, ensuring blood goes the right way.)
The backflow created more and more pressure, and leaked from her veins into surrounding tissue and organs, which swelled along with her feet and legs.
Not enough blood reached her lungs for purification, and her overworked heart enlarged.
Repair or replacement of the tricuspid valve through open heart surgery can fix the condition, but Jo was told the risk of death was too great - a position held by other cardiologists.
The only treatment offered was loop diuretic drugs, also called water pills, which temporarily flush excess fluid from the body.
Jo’s debilitating symptoms would worsen slowly - including a loss of kidney and liver function - until a horrible, early death.
Tony wouldn’t accept that, and began months of internet research. The medical papers he read, and panels he watched, made his head spin.
It was difficult to know if touted advances were genuine.
“I got to a point where I couldn’t do it anymore,” he says. “It was doing my head in. Then a week would go by and I’d get back into it.”
That perseverance paid off in July 2022, when he received a reply from a German cardiologist, one of a handful doing artificial valve replacements for severe TR cases, using a transcatheter technique, which meant open heart surgery wasn’t required.
He agreed to take Jo on as a patient, but that was disrupted by delays.
Jo had, in the meantime, come under the supervision of Hamilton-based cardiologist Dr Rajesh Nair, who works privately with Midland Cardio Vascular Services.
He suggested they try a Canadian specialist, Dr Neil Fam, doing similar, world-leading work.
Getting the go-ahead for compassionate use (making a new, unapproved procedure available for a seriously ill patient when no other options exist) took time.
Tony “decided to go from the top-down”, and got a reply after the sixth email to the chief executive of St Michael’s Hospital in Old Toronto.
“I was expecting, ‘Unfortunately, we regret to inform’... but he said, ‘We can’t believe the journey you’ve been through. The next email you’ll get will be from Neil Fam.’
“He gets hold of me - ‘We are on for the 13th of June.’”
(“Although he’s somewhat pushy, he’s quite polite,” Fam told the Weekend Herald about Tony’s energetic persistence. “I would do the same thing for my mother, let’s just say.”)
The new “Evoque” valve system was threaded to her heart, using a guide wire, X-rays and a 3D ultrasound, and inside a catheter.
Once in place, it was anchored and then deployed.
A nitinol (an alloy of nickel and titanium) frame self-expanded, and new tissue leaflets - made from the tough, double-layered membrane that covers cow hearts - fully replaced the damaged tricuspid valve and stopped all leakage.
Jo spent two days in hospital and flew long-haul home a week later. She hugged Salvi, flopped on to her bed, then realised something was missing.
“‘I didn’t have that throbbing, that shortness of breath,” she says. “I was at ease.”
A silent killer
Jo was the first patient in the Southern Hemisphere to have the procedure.
Fam, who did the world’s first in 2019, expects it to become as widespread as another minimally invasive procedure (called a TAVI) that replaces the aortic valve, and is routine in New Zealand hospitals.
Nair, who is head of cardiology at Waikato Hospital but spoke to the Weekend Herald in his private capacity, agrees and hopes to be able to offer it privately.
“At this stage, there are inherent risks when using first-generation devices and the technology we have today may not be suitable for all patients.
“However, cardiologists who specialise in structural intervention are trained in taking very calculated risks in specific situations.”
The Evoque system last month received certification by the European Union, a step that could ease the way for eventual approval here.
However, there would need to be a clear pathway into public hospitals for its maker, California-headquartered Edwards Lifesciences, to set up training and support.
It could be offered in the private system first if patients pay the entire cost, or private insurance companies approve it as a covered treatment.
Other companies are developing similar systems.
The number of New Zealanders suffering tricuspid valve regurgitation isn’t known.
Causes vary - including heart defects, genetic disorders, infection, chest injury, radiation therapy damage and rheumatic fever (rates of which are skyrocketing, particularly among Pacific and Māori) - and mild cases may not ever be detected or need treatment.
Symptoms like fluid retention often strike only when the condition is severe and difficult to treat.
“It’s very much a silent killer,” Nair says. “It’s a slow death … we are treating another patient, their legs are wet - they are leaking - and the kidneys can’t tolerate any more diuretics.”
That patient will get another procedure Nair has recently begun performing, which uses a device to segment leakage to the right side of the heart.
A third innovation can greatly reduce leakage in another valve, the mitral, by using a clip device. (The same device has been used on the tricuspid valve. Nair assessed Jo, but her condition was too severe.)
Not all patients are suitable for these procedures. However, the minority who are must go private - despite mitral clips being around for close to 20 years.
Health authorities are too slow to approve new therapies for the public system, Nair says, partly because of a narrow focus on the initial cost.
A valve put in through traditional open heart surgery is cheaper, he says, but a patient needs days of recovery in intensive care, longer in a coronary care unit, and around six months of recuperation at home.
Patients like Jo, on the other hand, can walk within hours, and are discharged in good condition after two days in hospital.
If she had relied upon the public system, she would have faced a slow, miserable decline involving hospitalisations - a cost Nair says isn’t adequately recognised in decisions on what new therapies to offer.
“There needs to be a system that ensures more accountability for the dollars we spend in public medicine.”
Evidence needed: Cardiac Society
The Cardiac Society (the professional body for cardiologists) warns New Zealand lags behind in treatments offered.
One big gap: other countries provide SGLT2 inhibitor drugs for all people with chronic heart failure. These medications protect the heart from getting weaker, and can extend the life of patients, ease debilitating symptoms like fatigue, and reduce hospitalisations.
In New Zealand, these vital medications are only funded for Type 2 diabetics who meet certain criteria, including being at high risk of heart and kidney complications.
“The international guidelines are now that every patient with heart failure should have access,” says Dr Sarah Fairley, who heads the society’s cardiovascular intervention group and works at Wellington Hospital.
The sort of mitral valve repairs done privately by Nair should be available in public hospitals, Fairley says, as they are in the UK, Australia and Canada.
However, the number of people suitable for such procedures is small, she says, with a strict selection process.
In regards to the procedure received by Jo, both Fairley and the society’s NZ chair, Dr Selwyn Wong, caution that there isn’t yet the evidence base to know its benefits or risks.
“I think it’s a celebration of what medical technology can achieve,” says Wong, who works at Middlemore Hospital.
“[But] it’s not a cure-all, and there isn’t evidence that it makes people live longer. It might alleviate symptoms, but the data is not there yet. It’s too new.”
Fairley agrees.
“It certainly does make this select group of patients involved in the trials symptomatically better. But I don’t want people to be flooding their GPs saying, ‘I want a transcatheter procedure’. Because we’re not there yet.
“The number of people the technology is appropriate for is probably really small. And it will not be a low-risk procedure.”
The more pressing and widely-beneficial change for New Zealand would be to fund quality heart-failure drugs, Fairley and Wong say, and ensure hospitals and clinics have enough staff and physical resources, including beds.
Wait times for diagnostics like echocardiograms, specialist appointments and treatments are “ballooning”, they warn.
“The length of time waiting in hospital for procedures is longer than other countries in the world, and longer than international guidelines,” Wong says.
If somebody has a heart attack, for instance, they should usually have tests done and a treatment decision within 72 hours of admission, but “we’re nowhere near meeting that target,” Fairley says.
The wait for an angiogram - a scan of blood flow through arteries, veins or the heart - in some areas is more than two weeks. Delays risk life-threatening harm, including further heart attacks and arrhythmia.
(Cardiac surgery is also under pressure - nationally, around one in two New Zealanders needing heart surgery are waiting longer than the maximum time frame considered appropriate by their specialists.)
Cardiovascular diseases (including stroke) kill nearly 10,000 New Zealanders every year. An article in this month’s NZ Medical Journal estimates almost a quarter of those deaths are avoidable through better prevention and timely access to healthcare.
That increases to half of all deaths among Māori and Pasifika.
Gisborne Hospital cardiologist Dr Gerry Devlin, an associate professor and the Heart Foundation’s medical director, was a co-author of the article and told the Weekend Herald a national action plan was urgently needed.
Services are struggling and uneven across the country.
“The wait times at the moment are as bad as I’ve seen them in my time in New Zealand. And I’ve been here as a cardiologist for 25 years.”
That’s partly because of a workforce crisis - “I’ve got two kids in health, one’s a nurse, one’s a radiographer, and they’re both in Perth” - and because proven treatments aren’t funded, he says.
For example, the SGLT2 inhibitor drugs for heart failure would help thousands of people live longer in better health, Devlin says, and keep them out of hospital.
He agrees with Nair that an overhaul of the “cumbersome, non-transparent” system for assessing new therapies is needed.
That’s underway, says Rachel Haggerty, director of strategy, planning and purchasing and hospital and specialist services for Health NZ/Te Whatu Ora.
A new “transparent decision-making process” will include “a prioritisation process across hospital and specialist services that will enable Te Whatu Ora to make fair decisions as to which new developments in specialist services should be publicly available”.
A passion for family
In 2018, 2019 and 2022 Tony was honoured as a “local hero” in the annual Kiwibank awards after he and his dojo helped raise more than $160,000 for causes including Ronald McDonald House, Wellington Free Ambulance, Mary Potter Hospice, and the Wellington Hospitals Foundation.
It’s now his family’s turn to ask for charity - there’s a Give-a-Little page, and last week they held a fundraiser for Jo’s treatment costs at the waterfront Wharewaka Function Centre.
Tony’s close friend, rugby commentator Grant Nisbett, MCd, and about $15,000 was raised through entry fees, auction items and raffles.
In a video message, Fam said he hoped local specialists like Nair would soon be performing the same procedure: “Josephine - you’re a pioneer. Tony - you’re a great patient advocate.”
The financial and emotional strain on the family extends beyond Jo’s illness - when Tony was in Canada, his wife Meita was diagnosed with stage 2 triple-negative breast cancer. (He kept the news from his mum until she was home.)
Meita, with whom Tony has two sons, Rocky, 15, and Apollo, 10, is on unfunded immunotherapy, which will cost tens of thousands of dollars in total.
“A lot of favours, put it that way,” Tony says when asked how they’re managing.
“I’ve got people who are giving me $10,000 handshakes and saying, ‘Pay it back whenever’, just to get us through another treatment.”
The same flexibility wasn’t extended by Southern Cross for Jo’s illness. Her policy included up to $30,000 a year towards medical expenses for treatment unavailable in New Zealand, but she was ineligible because her procedure wasn’t on the private insurer’s approved treatment list.
Treatments are added “based on medical advice around several factors such as clinical evidence and efficacy, cost, product impact and member outcomes,” Anthony McPhail, Southern Cross Health Insurance chief operating officer told the Weekend Herald.
That stance stung, but for the Gaetas what matters is that Jo is still with them.
She’s back to her gardening, and preparing for another Christmas - rejuvenation enabled by cutting-edge medicine, and a village of support, with Tony at the centre.
“I owe my life to him,” she says. “He just didn’t take no for an answer.”
That’s nothing remarkable, Tony insists.
“We’re Italian, you know what I mean? We’ve got a passion for food, music, wine and family.
“I’m shocked when people say, ‘Geez, it’s amazing what you’ll do for your mother.’ And you wouldn’t? Come on!”
Nicholas Jones is an investigative reporter at the New Zealand Herald. He won the best individual investigation and best social issues reporter categories at the 2023 Voyager Media Awards.