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Jakarta Post

Incontinent teenager hopes for cure, ordinary life

At a glance, Muhammad Arfah looks like a typical teenage boy, healthy and cheerful

Andi Hajramurni (The Jakarta Post)
Makassar
Sat, February 6, 2010

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Incontinent teenager hopes for cure, ordinary life

A

t a glance, Muhammad Arfah looks like a typical teenage boy, healthy and cheerful. If you get a little closer, you'll find that he's not.

The 14-year-old is incontinent, which means an unpleasant odor lingers around him constantly.

Doctors at the Wahidin Sudirohusodo Hospital in Makassar, South Sulawesi, where he is a patient, say Muhammad suffers for epispadia, a rare abnormality that afflicts male genitalia and prevents him from urinating normally.

"I want to be cured. I want to continue studying. I want to be a doctor," said Muhammad, who is in the sixth grade at an Islamic school Madrasah Ibtidaiyah Sugiale in Barebbo subdistrict, Bone regency, South Sulawesi.

The hospital's pediatric surgeon, Irawan, said the boy's bladder had developed abnormally. Instead of being located internally, near his stomach, it is above his penis, and external, appearing as a lump of reddish flesh the size of an adult finger.

"This is a rare case. It's the first to occur in South Sulawesi and probably even in Indonesia," Irawan said.

He said the treatment should be conducted very carefully and required repeated and thorough tests to avoid mistakes.

The boy has undergone a series of tests, including X-rays, biopsies, urine analysis, anatomical examination and psychological examination.

The hospital's three leading experts in pediatric, urology and plastic surgery, respectively, plan to create and insert an artificial urethra to allow him to urinate normally.

"We are still coordinating with other doctors, especially urologists from the Cipto Mangunkusumo hospital in Jakarta, as we plan to involve them in the surgery," said Irawan, adding that no clear date had been set for the surgery.

Arfah was admitted to Wahidin Sudirohusodo Hospital Dec. 7, 2009, a transfer from the Sugiale community health center, with his costs covered by the government's Jamkesmas health insurance.

The boy's mother, Becce Tang, said she did not suspect her son had an abnormal medical condition when he was born on Nov. 8, 1995.

She thought the defect was nothing to worry about.

When the boy was 20 days old, she took him to a physician who advised her to take him to Wahidin hospital but since there was no vacant ward, she brought him to another hospital.

At the other hospital she was told her son would need three surgeries, each at the cost of Rp 2 million without any guarantee of success.

"We finally went home since we simply could not afford it," Becce said.

Until recently, she had continued to stay away from hospitals and doctors, as she saw that, physically, her son was growing up normally, apart from incontinence.

He also could not wear underwear since rough material hurt his bladder.

Becce said that every time he went to school, he would wet his pants and become smelly, an occurrence that he was increasingly uncomfortable with as he grew older.

He subsequently began to withdraw from his friends, causing his family such concern that they finally returned to finding medical treatment for his condition.

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