Ailing boy's parents fight to get him equal medical treatment

By Ayun Sundari and Mike Ormsby

JAKARTA (JP): Susanto is four years old and has a tumor. What began as a lump in his nose is now almost as large as his head, pulling his face out of position.

It is hard not to flinch when first meeting the little lad with the big brown eyes. Silently, he gazes back, accustomed to the unwitting stares of strangers. Doctors are unable to confirm whether or not the tumor is malignant. What is certain, however, is that it is growing day-by-day. And that time may be running out.

The problem was diagnosed two years ago when Susanto was living with his parents Tupon and Dasiyem, transmigrant farmers in East Kalimantan. Susanto suffered frequent nose-bleeds and a local doctor found a marble-sized growth in his nose. He was then referred to a bigger hospital in Palangkaraya, whose staff referred him to Cipto Mangunkusumo General Hospital in Central Jakarta.

By November 1999, Susanto's "marble" was as big as a tennis ball.

Doctors at Cipto Mangunkusumo recommended surgery, but Susanto's age and a high fever ruled against it. Instead, he was prescribed drugs, which slowed the tumor down, and the family returned to their home town in Yogyakarta. This year, the swelling returned. Soon, it was the size of a large mango.

A report about Susanto in Yogyakarta's Kedaulatan Rakyat daily newspaper raised public donations for chemotherapy in Sarjito hospital, but Tupon says the side effects of the treatment were severe.

"I was afraid Santo might die. His temperature was high, he was vomiting blood after each session. We stopped the chemotherapy," Tupon said.

In desperation, Tupon wrote to then president Abdurrahman "Gus Dur" Wahid, whose aides answered promising free treatment back at Cipto Mangunkusumo. The family returned to the capital, with high hopes. But after almost two months living in Cipto, Tupon now says their case is going nowhere fast.

"Seven doctors examined Susanto. They took samples. They told me they would perform surgery. Five weeks ago. Since then, no results, nothing. The tumor is bigger. Why the delay?" he asked.

Sometimes, just like any healthy kids, Susanto plays in the hospital corridors. His spirits too can often be surprisingly feisty, with an attitude that says: "Yeah, I got a problem, what's yours?". But when darkness falls, it is a different story. Susanto cries. His only relief are the frequent painkillers Tupon administers via the child's anus.

"Nurses here refuse to help," claimed Tupon, "so I have to do it myself. They don't even allow me to keep medication in the fridge. Plus I have to pay for drugs, despite the promise of free help. We feel like pariahs. I fear for my son's life. The doctors are dragging their feet."

The Cipto Mangunkusumo doctors, including the hospital's medical service deputy director Irchramsyah, who was representing director Merdias Almatsier, and Budi Sulistyo -- the doctor closest to Susanto's case -- responded to these fears, insisting that the hospital does care.

"Cipto is a hospital that loves people. Staff are currently treating eight hundred cases from poor families. Please do not use this case to overlook the fact that we do a lot of good work.

"Cipto would never neglect a patient. Our doctors sometimes even use their own money to help. Cipto will take care of all costs, including surgery if needed. We don't expect his family to pay for that," Irchramsyah said.

Delays, such as on Susanto's biopsy results, were blamed to its difficult procedure.

"It's a more difficult procedure than a regular biopsy. Results take time. Perhaps this message was not properly communicated to the parents," said Bambang Hermany, another doctor.

Late biopsy results were questioned by chairman of the Foundation to Empower Indonesian Health Consumers Marius Widjajarta. "Such a delay for biopsy results is strange. They should at least have a 'working diagnosis'. Even if it's bad news, the family has the right to know," he said.

However, the delays, according to the hospital, were inevitable.

"We have to wait for the results, before we know if and when to operate. Or maybe Susanto needs radiation treatment instead? We simply can't say at this stage," Budi Sulistyo said.

The general hospital, known for its vast and reputable doctors and specialists in the country, has long been criticized for its poor service.

A resident even told a grim joke, "Go to Cipto with acne, and you may go home in a hearse. If you can afford one!"

Chief of a Jakarta-based NGO which works toward children's health, who offered this opinion on conditions of anonymity, even accused the hospital for imposing a ruthless self-interest culture.

"Forced to be self-sufficient, Cipto has an internal mafia and a culture of ruthless self-interest. It's understandable, but regrettable. Cipto doctors have their hands tied. Susanto's case is tragic, but not unusual. That's the real shame."

However, Susanto could not wait too long.

"I've just been to buy Susanto's medication. The doctor said he knows I have money from donations, so I had to pay. I was promised free treatment by Gus Dur, but at this rate, we will soon have no money again. Then what?" Tupon asked.

Susanto watches and listens as if searching for clues to his fate. It's as if he knows time alone will provide the answer. Or maybe a miracle.

-- Both authors work in the production unit, Internews Indonesia, a media NGO in Jakarta.