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.