Both a blessing and a curse
Updated: 2011-11-09 07:57
By Liu Zhihua (China Daily)
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As elsewhere in the world, conjoined twins are a rare phenomenon in China, but they tend to be born to poor families, who cannot afford treatment.
Li Xin, an 11-year-old boy from Langchi town, Yingshan county in Sichuan province, has always been made aware that he is different from his peers.
When Li and his brother Li Qiao were born on May 12, 2000 - their bodies fused from the upper thorax to the stomach - doctors were so frightened they dropped the pair on the ground.
When the parents were told that a hospital in Chongqing could treat the "disease", they asked for a consultation.
They were not charged for the long-distance bus ride, as their plight elicited sympathy. When they arrived in Chongqing, a taxi driver also waived his fee and took them to Xinqiao Hospital, where the twins were sent straight away to intensive care unit.
"We didn't know the taxi driver had called the hospital," the mother, Wen Xueqing, says. "He must have known the hospital had done a successful operation before."
Xinqiao has treated five sets of conjoined twins and successfully separated two conjoined boys in 1996. It confirmed it was prepared to treat the Li twins for free, too.
After three months, the two boys underwent a 10-hour operation, followed by a series of treatments.
Both boys survived the operation, but Li Qiao later died of cerebral palsy and pneumonia at age 4. Li Xin has problems seeing out of his right eye.
As a result of the publicity, the family has received public donations and government assistance, including helping them build a new house. Li Xin also attends the best primary school in town for free.
"In China, conjoined twins are more than likely to be born to poor families from poverty-stricken areas," says Wang Weidong, director of Xinqiao Hospital. "They are vulnerable and need our help."
But not all conjoined twins are so fortunate with assistance.
Li Dumiao, director of the Department of Pediatric Surgery of the First Affiliated Hospital of Fujian Medical University, has performed seven successful separation operations for conjoined twins but says money for treatment is always an issue.
There is no State-level medical insurance plan for conjoined twins. Nor are there any associations or foundations for their families to turn to.
"The occurrence of conjoined twins is rare, and it is impossible to establish a foundation for such a small group of people," Li says.
He adds the usual method of raising money for treatment is to rely on media reports and establish donation drives.
"Sometimes, I go to shopping malls in (Fujian province's) Fuzhou and make appearances that are broadcast on electronic screens to justify the operations and solicit donations," Li says.
For families of conjoined twins, in addition to the financial burden, social stigma is also an issue. Occasionally, the parents will leave their kids at the hospital and vanish.
Other families are reticent about media attention, saying they don't want people to know their kids are conjoined twins in case they face discrimination.
Wen Xueqing, the mother of Li Xin, says although many people have been kind enough to donate money to help them, they still face rumors the family is cursed because they have done something wrong.
"I have no friends at school," Li Xin says.