Facial surgery helps a Lampung boy enjoy life again

Facial surgery helps a Lampung boy enjoy life again

By Ati Nurbaiti

JAKARTA (JP): Alip Mustofa Arifin is one young Indonesian who
is ever so proud of his very flat nose.

"It looks nice now, my nose is gone," he said shyly when asked
how he felt when he looked in the mirror after a recent surgical
procedure relieved him of a facial deformity.

"His father, brothers and sisters will be so surprised," said
his mother Suparmi.

A high pressure of brain fluid, which caused the swollen-
looking nose, brought on daily dizzy spells, making studying
difficult and focusing his eyes painful. He is lucky not to have
lost his eyesight.

Alip, 11, has only advanced as far as second grade at his
elementary school in Way Halim, Lampung.

Although his mother claims relatives and neighbors are fond of
Alip, there are times when his peers cannot behave.

"Sometimes they are naughty and deliberately push him to the
ground when they prayed together," Suparmi said, adding that the
falls caused Alip to pass out.

Suparmi also found it necessary to reprimand Alip's teachers.

"I tell them that they (the young ruffians) can hit Alip
anywhere but the nose if he's naughty."

Alip didn't linger long in front of the mirror - he was off
with a group of new friends to the Indonesia in Miniature Park in
East Jakarta barely two days after the surgery.

"He had wanted to visit Taman Mini for a long time," said his
smiling mother.

Other worries can come later, like catching up with semester
exams. "The Foundation people have arranged for permission with
his school principal," said Suparmi.

Alip is one of over 2,000 children suffering from deformities
of the head and face (cranio-facial) who have benefited from the
services of the Citra Baru Foundation, founded in 1989 by a group
of patrons now headed by Hartini Moerdani.

Complexities in the womb before the fetus is three months old
and hereditary factors are among the causes of cranio-facial
abnormalities.

Such abnormalities include protruding brain membranes and the
brain itself through skull defects (meningoencephalocele), or
premature union of the sutures of the skull which cause misshapen
heads.

Severe cases may lead to low intelligence, blindness or mental
retardation - worsened by low self-esteem or seclusion.

Dr. Bisono, a surgeon, says operations by plastic surgeons and
neurosurgeon are designed to make the patient's head and facial
injuries "less of a health hazard, less humiliating as well as
less frightening for others and, with luck, normal."

Running on a few regular donations, active fund raising by the
Foundation is necessary to meet monthly costs of some Rp 25
million for the Jakarta center alone. One activity is a week-long
exhibition and sales of ceramic pieces by noted contemporary
sculptor Widayanto. The exhibition opened yesterday and will run
until June 14 at Tunjungan Plaza in Surabaya.

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Based in South Jakarta and Surabaya, Citra Baru
representatives are also found in seven other locations in
Sumatra, Bali, Lombok, Ambon and the tiny Buton Island of
Southeast Sulawesi.

"Information to representatives is spread by word of mouth,"
said Moerdani. Individuals in areas which housed former patients
have become representatives, a crucial link to the Foundation in
the absence of any statistics for people with these deformities.

Information is also obtained from doctors or hospital staff
who have told distraught parents that necessary treatment,
equipment and expertise is not on hand or within their financial
capacity.

But while physically-deformed people evoke curiosity and
sympathy, leading to reports from remote villages to the
Foundation, "many families with abnormal-looking children tend to
be withdrawn," said Moerdani of the difficulty in obtaining a
wider picture.

"The only figures we have (for such persons) are those from a
number of medical institutions concerning one type of cranial-
facial deformity, cleft lips, which affects around one in 800
people born worldwide," said Dr. Bisono, who heads the selection
team at Citra Baru which decides on which patients to operate.

"More severe deformities are known to be rare, both in
Indonesia and elsewhere," he said.

Nevertheless, Citra Baru is forced to limit registration to
about 10 per month, "or else people would be piled up at our
center," Moerdani said of the office-cum-temporary homestay on
Jl. Bangka Buntu I/49 in Pela Mampang, South Jakarta.

"There are even those who come here to request treatment of
other deformities like on the leg," said Endang who runs the
Foundation's administration.

"Are figures really important?" Dr. Bisono said, adding there
is no way of quantifying variations among age groups, sex or
income levels. "Maybe those from rich families directly seek
treatment abroad," he added.

Moerdani thinks it may be a coincidence that several patients
have come from Lampung, East Nusa Tenggara and Buton.

"We plan to research these cases. We may learn why they are
found in certain areas with poor nutrition but not in others
where nutrition is equally bad," she said.

Given the high costs of surgery and specialized equipment, he
said it would be inefficient to construct surgical facilities
outside the large cities, "which require class A hospitals."

Besides, experts are rare because "there is little reward."

Therefore patients outside Jakarta and Surabaya must expect to
leave homes and schools for at least a month, and return
indefinitely for treatment.

Costs range from around Rp 500,000 to upwards of Rp 7 million,
depending on individual cases, and do not include surgeon's
services, which thankfully are free.

However, Moerdani says families are encouraged to pay whatever
they can, "to share the responsibility of treatment, and to help
others."

Families which are considered capable of independent fund
raising are not accepted.

For Dr. Bisono and a handful of other surgeons, what is more
important than hunting for statistics is getting down to business
once patients are selected, like 21-year-old Nurrudin from
Ujungpandang, South Sulawesi, whose left side of the face - his
eye, nose and cheek - look literally torn apart.

"It was from an infection during childhood," said Dr. Bisono
of one of the causes of Nurrudin's condition.

Productive

Citra Baru only admits patients under 25, "so they can still
be productive for a relatively long time," says Dr. Bisono.

For Nurrudin, this means starting to learn to read and write
beyond his own name. He patiently sat waiting for another round
of surgery at Sejahtera clinic in Central Jakarta, and claims he
is "no longer afraid."

Countless stitches run from his forehead all the way to below
his neck, attracting attention from curious onlookers, but he
seemed oblivious to their staring.

"I am no longer in pain," he said in a muffled voice, and then
spoke passionately about his trip to Taman Mini.