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