Cheerful, shy and restless, Khan Sang is little different from most 10-year-olds. Those who know him say he is well-liked in his homeland in Stung Treng province’s Thala Barivat district.
But Khan Sang stood out until a few weeks ago. The top section of his nose bone was missing, leaving a hole in his skull through which part of his brain protruded, in the form of a fist-sized growth between his eyes and nose.
The medical term for the condition is nasofrontal encephalocele. The common Khmer term is Bromoy Damrei, or elephant trunk, a medical official who works with Khan Sang said last month.
Such children seldom make it to adulthood without expert medical intervention, hospital officials say. But Cambodia has no hospitals able to perform the operations that would save their lives, hospital and Ministry of Health officials said last month.
On Oct 24, thanks to international sponsorship, Khan Sang flew to the US. He had extensive—and successful—brain and reconstructive surgery on Sunday.
The operation came not a moment too soon, Khan Sang said in an interview in Phnom Penh last month. “I want to go to the US for the operation and I want to go now,” he said.
His father, Sorn Sokhun, said he hoped the operation would go according to plan. “He can’t breathe well and he can’t see normally,” he said.
It is remarkable that Khan Sang has even lived to age 10, John Morgan, executive director of the Angkor Hospital for Children, said last month. The Siem Reap hospital has cared for Khan Sang in the past and helped coordinate the US operation.
The hospital alone has more than 20 children suffering from nasofrontal encephalocele on a waiting list for surgery.
The children were brought to the hospital by their parents for other conditions over the past three to four years, he said. They come from all over Cambodia, Morgan said.
Nasofrontal encephalocele affects one in every 50,000 children worldwide, Morgan said. The incidence rate here is not higher than in other countries, hospital and Health Ministry officials said.
But in Cambodia, it is very difficult to diagnose and treat the condition in its early stages, Morgan said. In the US, children with the condition “are identified while newborns and are treated before they leave the hospital,” he explained.
Khan Sang received surgery at San Diego Children’s Hospital in the US state of California. The operation was scheduled to be conducted by a team of at least five unpaid neurosurgeons, plastic surgeons and pediatricians, Morgan said last month.
Khan Sang is now expected to enjoy an ordinary lifespan once he returns to Cambodia, said Dr Christopher Greeley, a US pediatrician who volunteers at Angkor Hospital. All that will be left of his large growth will be a scar beneath his eyes.
The operation and flights were paid for with money donated and raised by David Snell, a doctor with the US Air Force. Snell met Khan Sang for the first time in 2001, while doing volunteer work here, hospital officials said.
Hospital officials were unable to confirm how much the entire procedure, including flights and the use of hospital equipment, would cost.
The US Embassy granted visas to Khan Sang and his father, Sorn Sokhun, without any interviews, according to Marin Yann, Angkor Hospital’s Phnom Penh representative.
The causes of Khan Sang’s condition are unclear, hospital staff and Health Ministry officials said. The most likely cause is malnutrition during pregnancy, Greeley said. Other possible explanations could include genetic problems, or poisoning caused by toxic pesticides used for farming.
The fates of the other children on the waiting list at Angkor Hospital, or those undiagnosed in the rest of the country, remain uncertain.
“In Cambodia, there is a once in a million chance to get surgery like this,” Marin Yann said. Without surgery abroad, their future looks bleak.
“Children like this are condemned to a very short and painful life,” Morgan said.