Tuesday, December 12, 2017
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Elda de Jesus is a poor subsistence farmer, raising vegetables to feed her family on the outskirts of Dili. But she didn't need a medical degree to know that the blood noses, headaches and wildly racing heart meant something was badly wrong with her oldest son Lucas.

Like so many of Dili's poorest, Elda and Lucas de Jesus Soares, 15, ended up at Bairo Pite Clinic. Dr Dan Murphy, a legendary American medico who has served the Timorese for 16 years, runs the clinic, which is Timor-Leste’s leading community health service.

"Dr Dan" took one look at the teenager, breathless, weak and pale, and knew he was in trouble.
Renowned for his accurate diagnoses with rudimentary or no tools, Dr Dan examined Lucas's heart with a stethoscope and confirmed his suspicion. Almost inconceivably, this teenager was dying of heart failure. And, as it would later emerge, for want of an operation that could and should have been done when he was an infant.

Ordinary Timorese like Lucas's parents have few options for accessing any health care, let alone top medical specialists. But Lucas was in luck. The next week visiting Australian cardiologist Dr Noel Bayley was due in Dili. Dr Bayley's medical aid charity, East Timor Hearts Fund, provides young Timorese with life-saving surgery in Australia. 

A veteran of 15 years of pro bono service in Timor-Leste, Dr Bayley has diagnosed and arranged treatment for hundreds of patients.

In the converted shipping container that serves as his temporary base while in Dili, Dr Bayley's portable cardiac echo machine confirmed the diagnosis: an atrial septal defect (ASD), commonly known as "a hole in the heart". Lucas was born with the condition, and now it was causing his heart to fail.

"Lucas's heart has an abnormal opening in the dividing wall between the upper filling chambers of the heart (the atria)," Dr Bayley explains.

"It has caused a massive leakage of blood from the left heart to the right heart and this is imposing an intolerable load on the right heart, which is failing as a consequence.

"The condition is extremely serious. Without surgery, Lucas's prospects are extremely grim. He won't survive his teens, and his quality of life will continue to worsen."

And so began the race to find an Australian hospital to treat Lucas.

Many of the fund's patients require simple procedures to correct narrowed heart valves, the legacy of childhood rheumatic fever, which is rife in developing countries.

But the surgery Lucas requires is long, complex – and very expensive. "The surgery involves placing Lucas on a cardiac bypass machine to replace the heart's function while his heart is stopped, opened up, and the hole repaired," Dr Bayley says.

"It takes several hours and involves a large team of experts – surgeons, anaesthetists, bypass pump technicians, highly trained operating theatre nurses."

Operations like this don't come cheap.

The fund "knocked on a lot of doors", but despite the goodwill shown toward the cause, finding a hospital to take Lucas proved challenging. Everyone was aware as the delays went on, months into years, that his condition was continuing to deteriorate.

"We've lost patients before between diagnosing them for surgery and getting them to Australia for the surgery," Dr Bayley says.

"Two years ago I diagnosed a lovely teenage girl, Serafina, with advanced mitral stenosis. We found a hospital to take her and had her scheduled for surgery within three weeks. But as we were finalising her travel plans we received word that she had died. It was very sad."

As his condition worsened, Lucas was not able to make the long walk to the bus to get to school, and could no longer do the things he wanted and needed to do, like helping his family grow vegetables or kicking a soccer ball with his friends.

For his mother, Elda, the stress of waiting was almost unbearable. Elda has already lost three of her seven children, and was desperate for her oldest son to be given a chance at life.

Finally, in late 2013, almost two years after Dr Bayley first diagnosed Lucas's condition, renowned surgeon Andrew Cochrane and MonashHeart, a leading specialist cardiac service in Melbourne, came to the rescue.

Ironically, it was the long wait that ensured Lucas received treatment, because he was now old enough to not need a specific children's facility. This meant that he could receive treatment at MonashHeart, a long-term partner of East Timor Hearts Fund.

The final piece of the puzzle came as Australian telco, Macquarie Telecom, East Timor Hearts Fund's major sponsor, agreed to financially assist the procedure.

"East Timor Hearts Fund is a small, community-based organisation. We rely on volunteers and partners to help us provide treatment to patients like Lucas," says Timorese-born director and patient-support coordinator, Ana Saldanha.

"As well as the hospital partners, MonashHeart and Royal Melbourne Hospital and the surgeons who donate their time, our sponsors play a crucial role.

"Toll Remote Logistics began flying our patients to Australia using surplus seats on its Army flights when it was in Timor-Leste supporting the Australian Defence Forces there.

"Since the ADF's withdrawal last year the company continues to fly our patients and a health support worker from Bairo Pite Clinic."

When patients arrive in Melbourne, East Timor Hearts Fund mobilises a team of social support volunteers, lead by Ms Saldanha. They provide everything from mobile phones and warm clothes, to hospital visitors bringing in traditional Timorese fish soup (água-sál ikan).

"The whole logistical operation behind the operation often feels like it's as complex as the surgery itself," Ms Saldanha jokes.

At the time of writing, Lucas's had just arrived in Australia, with surgery planned in late March. Asked what he would do when he was better, Lucas says: "I will enjoy high school, play with my friends and play football."

Lucas's father Marcos struggles to express his feelings about his son's second chance at life.

"Australian people are very good people. I would like to thank the Australians for helping my son Lucas to recover."

Ingrid Svendsen is the board chair of East Timor Hearts Fund

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