East Timorese family struggles to care for sick daughter

ABC - Saturday, 4 November , 2006 08:25:00
Transcript AM Programme

Reporter: Anne Barker

ELIZABETH JACKSON: East Timor's capital, Dili, has returned to a fragile peace since the gang violence that erupted there last week.

But the constant threat of violence hangs over the city, terrorising the population and preventing anything resembling normal life.

One family has it tougher than most.

They are struggling to care for their nine-month-old baby, who recently returned home after life-saving heart surgery in Sydney.

Anne Barker reports.

(sound of baby Maria laughing)

ANNE BARKER: The tiny girl with a heart problem has captured more than a few hearts along the way.

Publicity about baby Maria's condition in April drew a flood of generosity from Australians wanting to help.

Donations covered the cost of her trip to Sydney for open heart surgery.

And doctors at Sydney Children's Hospital volunteered their time and expertise to repair the hole in her heart, which at the time was the size of a thimble and as frail as tissue paper.

DAN MURPHY: She had a big whole through the left and the right side of her heart.

ANNE BARKER: It was Dili-based American doctor Dan Murphy who diagnosed baby Maria with a ventricular septal defect, which meant her heart was sending too much blood to her lungs.

The operation is now routine surgery in Australia, but in East Timor, Maria dos Santos would almost certainly have died.

DAN MURPHY: First of all she was premature. Secondly she had so much trouble breathing, she couldn't gain weight. All her energy was used just to try to keep up enough air going in and out.

So there was no way she would have survived.

ANNE BARKER: Now baby Maria is back home in Dili, slowly adjusting to family life.

The dos Santos family lives in a flimsy bamboo hut in one of the poorest suburbs in Dili.

And their daughter's plight is not helped by the constant threat of violence.

Sporadic fighting for the past six months has made it impossible for her parents to find proper work.

Her father, Vidal dos Santos, is forced to sell cheap children's toys to get by.

"It's very difficult," he says, "because of the fighting I can't get around. It's difficult to get money. Only when things calm down can I look for another job."

But for all their troubles, the dos Santos family is relatively lucky. More often than not other babies here with the same heart condition are destined to die.

There simply aren't the doctors or the medical equipment in East Timor to perform the high-risk surgery.

Now, Dr Murphy is worried that baby Maria will need another trip to Australia to correct ongoing complications.

DAN MURPHY: She continues to have upper respiratory infections, and I can still hear a heart murmur there. They weren't able to completely repair everything. But we have to see how she does, and the mother knows to come here all the time, so we'll check, and if it starts to get worse, we'll have to call Australia.

ELIZABETH JACKSON: Dr Dan Murphy, from the Bairo Pite clinic in Dili, with Anne Barker.

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