When I walk into operating theatre five of the Royal Melbourne Hospital’s cardiothoracic unit, the patient has already been split down the middle. His rib cage is prised open and a deep incision runs from breast to abdomen. It plunges deeper than I’d imagined, this cut that exposes his heart to the world.
I can barely recognise the figure on the operating table as a living human. Except for that unmistakable beating heart. The patient’s head is tucked beneath a screen, well away from the blood splatters and sharp metal instruments.
East Timorese Agripino, 29 – with heart surgeon Marco Larobina – is in Melbourne for life-saving heart surgery. Photo: Jason South
Every part of him, including his torso, is covered by sheets or plastic – except for that gaping chasm in his chest and the rhythmically pulsing heart. There are machines everywhere: tubes, monitors, drips. Hundreds of sterile instruments are meticulously laid out in trays and bowls.
The patient, Agripino Soares, is from a remote part of Ermera, south-west of East Timor’s capital Dili. From his home, Soares must walk for three hours to the nearest town to catch a bus – there are no roads into the area.
Throughout his life, Soares, who is 29, has battled fatigue and breathlessness. He has a heart condition. As a coffee picker in mountainous terrain, he has struggled to keep working.
He is here because of the East Timor Hearts Fund, an Australian charity that flies five or six patients a year to Melbourne for life-saving heart operations. The Royal Melbourne Hospital and Monash Medical Centre provide most of their services pro bono. Without the surgery, most of these patients would likely die.
In theatre five, the head anaesthetist, Associate Professor Reny Segal, reviews and adjusts the heady mix of drugs providing pain relief and anaesthesia to Soares.
With preparation for surgery underway, cardiothoracic surgeon Marco Larobina strides into the room. “How’s it going?” he asks, before cutting to the chase. “I want to know about the valve, I want to know if I can fix it.”
From testing before surgery, Larobina knows Soares has a rare congenital heart abnormality. A membrane, or small flap of skin, under the aortic valve blocks the passage of blood from his heart’s left ventricle. But, despite the use of sophisticated ultrasounds beforehand, Larobina can’t exactly tell what awaits him until he sees the heart with his naked eye.
I remark that the heart looks bigger than I’d imagined. It is enlarged, Segal explains. The muscle is unusually thick, working too hard to push the blood through an opening about 0.6 centimetres in diameter. A healthy diameter would be just two centimetres. “This ventricle has been going to the gym its whole life,” Segal says.
Larobina discovers that, in addition to the rogue membrane, the valve is damaged and leaky. This may be from childhood rheumatic fever, a common health problem in East Timor.
Incredibly, to operate on the heart, the surgical team must stop it beating. An elaborate process begins to transfer Soare’s heart function into the mechanical care of a heart and lung machine.
It is operated by Lisa Hewitt, a specialist known as a perfusionist. Teamwork becomes critical at this point, as Larobina, Segal and Hewitt work in sync, anticipating each other’s every move to ensure a smooth transfer.
On the heart monitor screen, the heart beat gradually loses momentum, the tall thin peaks on the monitor dropping to what the medical team terms ‘tombstones’ (because of their shape) and then starting to flat line.
The number next to the flat line is chilling – it has gone from about 70 beats per minute to an unambiguous zero. Transfixed by the monitor, I have forgotten to look at that living, beating heart in the patient’s chest. I glance over and see it is transformed into a flaccid, motionless mass of muscle, drained of life.
Yet, the surgical team is happy – the heart and lung machine is pumping, whirring and spinning in all the right directions and the patient’s vital signs are OK. The reparative work begins. Larobina slices out the obstructive membrane. The small, offending flap of skin is put into a specimen jar and set aside.
Larobina says he will try and repair the leaky valve. It is uncommon to repair an aortic valve, usually it would be replaced with a mechanical version. But that would entail taking lifelong blood-thinning medication, not easily available or monitored in Timor Leste (East Timor’s official name).
The jovial mood noticeably drops away as Larobina gathers all his concentration for an intricate, “fiddly” patch-up job. This involves thinning out the thickened valve and rearranging the position of the aorta. He won’t know if it’s successful until they get the heart working again and test it out.
Repair complete, the team begins the task of getting the patient off the heart and lung machine. Larobina’s blood-spattered surgeon’s glove scoops down into the chest cavity to cradle the heart, caressing and massaging it. It’s like watching the heart’s rebirth in a loving parent’s hands – the first moments of its new, and hopefully healthier, life.
Gradually, the heart starts to beat again, slowly at first, then picking up pace. All eyes are on the monitor as the flat line is replaced by the bumps and then peaks that represent a living, breathing human being. The heart rate creeps back up to 70 beats per minute. Relief permeates the air. Larobina is visibly stoked.
Two days after surgery, Soares sits up in a hospital bed tucking into Timorese fish soup, a traditional remedy. Back home, his wife anxiously awaits his return while she cares for their one-year-old son. She knows nothing of the operation’s success – there is no electricity or phone service where they live.
Without surgery, Soares had faced a grim outlook. Cardiologist Noel Bayley says that as a result of the congenital abnormality, he would probably have dropped dead without warning. Bayley has only seen one other such defect in 30 years of practice.
Bayley, from Warrnambool, was instrumental in founding the East Timor Hearts Fund. When he first visited the country, he was struck by the breadth and depth of heart ailments and defects.
Initially, he funded a number of patients out of his own pocket to come to Australia. After his work attracted public interest, the charity began and it now raises about $100,000 a year.
Chairwoman and co-founder, Ingrid Svendsen says they hope to double the number of heart patients they bring to Australia each year for surgery.
Poverty is a way of life for almost half of Timor Leste’s 1.1 million people, according to the United Nations Development Program. And rheumatic fever, a disease of poverty, ravages many young Timorese hearts. (It is rare in Australia except, tragically, in remote parts of central and northern Australia where Aboriginal communities are affected).
The charity also plans to introduce preventative measures – screening people for rheumatic heart disease and providing long-term penicillin treatment if necessary.
In the meantime, Bayley has examined hundreds of sick patients in his pop-up Dili clinics. He travels there twice a year and is forced into gut-wrenching decisions about which critically ill people should be chosen for treatment.
“I tend to pick younger patients and those with the best chance of making a full recovery,” Bayley says.
He acknowledges that many people find this an unpalatable topic. But he can’t hide from the confronting truths faced by a young, developing country where medication and treatment are scarce, while disease and illness are rampant.
Soares is the fourth patient flown to Melbourne this year. The next, 11-year-old Jeca Periera, will arrive on September 25.
Right now, he can only walk about 100 metres before becoming breathless and needing to rest. The boy will undergo a mitral valve procedure at Monash Medical Centre.
The culture shock for these patients arriving in Melbourne can be major, says Ana Saldanha, the charity’s patient support coordinator. She greets each patient on arrival at Tullamarine airport.
“They have never travelled outside Timor, let alone to a developed country or a big, sophisticated city,” Saldanha says. “It is my job to prepare them before they come, answer any questions they have and let them know what to expect,” she says.
Saldanha, from Mill Park, is a public servant. Since 2011, she has also provided a bridge between two cultures as a volunteer for the charity. She cooks the much-loved fish soup they all request after surgery – a broth of fish, ginger, onion, fresh basil, salt, water and tamarind sauce. Saldanha has always retained a strong connection to her homeland, even though it was 15 years between her departure and her next visit in 1990.
Saldanha was five when she left Timor Leste with her adoptive family in 1975, fleeing Indonesia’s bloody invasion. She went first to West Timor, which is part of Indonesia, then Portugal and Mozambique, before arriving in Australia at 18.
“That’s why my job is to help the patients if they feel scared and provide as much support as I can. I understand how they feel.”
Eight days after surgery, I sit next to Soares in the courtyard at Coburg’s Wild Timor Coffee café. I try to relay, via Timorese interpreter Lourenço Ico, how surreal it is to see Soares transformed from living corpse to healthy-looking human.
Soares is excited to see photos of himself undergoing surgery and is keen to have printed copies to take home to his family.
Soares was released from hospital two days earlier and has been resting in a motel. He is allowed to walk, slowly, for between five and 15 minutes at a time to build up strength.
He is full of gratitude – he wants to thank everyone involved in his surgery – and says he could never repay the debt. He was worried about the surgery beforehand. But “everything is now in the past and I’m happy”.
Before flying back to Timor in a couple of days, Soares and Ico have a mission – they are heading off to Woodlands Historic Park in Greenvale in search of kangaroos. Ico says that Soares had never heard of kangaroos and had no idea what they looked like until he was shown a photo of one.
Meanwhile, doctors are confident about Soares’ future. “He’s recovering beautifully, he’s going to sail along,” Larobina says.
He will attend a check-up at Bayley’s next cardiology clinic in Dili but Bayley says his treatment is virtually “done and dusted”.
And Soares has a message for the charity’s next young patient, Jeca Periera, who will arrive next week with his mum. “Don’t worry, everything will be fine, you will be very well looked after,” he says.
For more information, or to donate, go to easttimorheartsfund.org.au
Twitter: @rachelekleinman
East Timor health statistics
Population: 1.1 million
Life expectancy: 66
Under-five mortality rate: 57 per 1000 live births
Total health expenditure: 4.3 per cent of GDP
Source: World Health Organisation