Searching for salvation

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Searching for salvation

On March 4, a 32-year-old woman lay in a Seoul clinic experiencing heavy labor pains while delivering twins. After seven hours of effort, the woman’s doctor insisted she get a Caesarean section, because one of the two babies weighed far less than the other, making the ordeal that much more challenging.
When the doctor first saw the twins, his first expression was not one of congratulations. What he saw intimidated him: The two little girls were fused together at their tailbones. In other words, they were Siamese twins.
Exhausted from the delivery and the surgery, the mother Chang Yoon-kyung, along with the 34-year-old father, Min Seung-joon, felt confused and shocked.
“I simply did not know what to do,” Ms. Chang said. “But after a couple of days passed, I started to accept the fact that my little girls were not as normal as other babies.”
The number of Siamese twin births in Korea goes unreported because often in these rare deliveries, parents of conjoined twins tend to hide their existence.
Since 1950, the number of official Siamese twin births in Korea ― including Ms. Chang’s children ― amounts to three. While the precise reason why Siamese twins are born is not known, medical experts believe such cases occur when a fertilized egg, which is supposed to divide in two to form identical twins, does not fully cleave, leaving the two fetuses connected. Conjoined twins account for one of every 200,000 births.
The Min girls’ doctor, Song Young-tak, a pediatric surgeon at St. Mary’s Hospital in Yeouido, southern Seoul, said they could be as normal as other babies after surgery to separate them.
“Their reproductive organs are normal except that one of the babies might have to have an artificial attachment to her anal region after surgery, but the other will have a clean and normal-looking anus,” the surgeon said. “The operation is less complicated and simpler than for other Siamese twins, who are frequently attached at their spines or heads.”
Medical techniques aside, what really matters is the surgical price tag. The procedure for the little girls cannot be covered by government medical insurance because the condition is too rare in Korea, the doctor said.
“It takes approximately 1 billion won ($830,000) to separate these babies and the costs are even more for recovery and some additional cosmetic surgery,” Mr. Min said.
“I don’t think the surgery is for improving my children’s looks, to give them double eyelids or make their nose bigger,” he said. “They are sick and should be treated like anyone who receive medical benefits that the nation provides.”
The twin girls, Sa-rang and Ji-hye, whose names mean “love” and “wisdom,” respectively, in Korean, seem content if not happy despite being fused together. They eat five or six times a day and sleep deeply.
Suddenly, Sa-rang, who has snoozed through a reporter’s interview, woke up and cried. She seemed uncomfortable because she could not move her body freely. Furthermore, whenever the two girls defecate or urinate, their discomfort is intensified on account of a skin irritation caused by their attached condition.
“I am worried,” Ms. Chang said. “The two girls’ heads look tilted because they cannot move their bodies freely. The sooner they get the operation, the more likely they will recover from their condition. But the question is, how can we finance it?”
The parents, lacking in financial resources, have scoured up and down the land for help. Mr. Min’s small PC-bang recently went bankrupt because he could not focus on his business. The couple has consulted with various foundations for diseased children but the answers all had a similar ring: The case is too rare to get assistance.
Kim Young-eun, a social worker at the Seoul-based Child Protection Fund, explained that because the case has not been categorized as one of the Korean health insurance program’s insurable diseases or deformities, such as leukemia, AIDS, heart problems and third-degree burns, the fund cannot help. Ms. Eun added that the fund’s cap on individual cases is 3.5 million won.
Officials at welfare funds of several conglomerates contacted by Mr. Min and Ms. Chang told them their budget caps are 10 million won for individual cases, Mr. Min said, so they could not provide such a large sum as the family had requested.
Frustrated and desperate, the couple created an online Web site where people can donate money to the twin girls’ parents. Thus far, about 1,700 people have pledged to help Sa-rang and Ji-hye.
“I am really grateful to everyone who was willing to give help,” Mr. Min said, adding that the total amount collected by early June amounted to just 5 million won.
The couple then decided to take drastic action ― flying overseas in search of a handout, a free operation. At first, they considered London. This past January, surgeons at Great Ormond Street Children’s Hospital there separated two baby girls joined from mid-chest to mid-abdomen. After a four and a half-hour operation, the renowned pediatric surgeon Dr. Lewis Spitz and his team succeeded in a procedure that necessitated dividing a liver the girls shared.
“We heard the news and contacted the medical team there,” Mr. Min said earlier this month. “They did not confirm that they would operate on my little girls free of charge but my wife and I decided to give it a shot.”
Britain’s medical welfare program provides every citizen ― even foreign students studying temporarily in the country ― free medical treatment. Mr. Min even considered registering in a language course to qualify. However, the anticipated living expenses in London, one of the most expensive cities in the world, cast a pall over the couples’ mood.
Then, the couple heard about another neurosurgeon, Dr. Keith Goh of Singapore’s Raffles Hospital. Two years ago, he successfully separated 11-month Nepali twins conjoined by their heads, and will attempt a similar feat on adult conjoined twins from Iran this summer.
Members of a Korean church in Singapore helped bring the Min twins to Singapore for separation upon learning of their plight, the New Straits Times reported, and they arrived a week ago. The church elders were impressed by Dr. Goh’s work and reputation.
The Iranian twins are scheduled to be operated on July 5, and the latest reports from Singapore have Sa-rang and Ji-hye on the calendar for mid-July. No date has yet been set, however.
The surgery’s estimated $29,000 cost continues to pose a stumbling block. But according to Cho Woon-ho, a close neighbor of the couple’s in Singil-dong, southern Seoul, officials at Raffles Hospital will seek funding for the conjoined Koreans’ surgery from local companies or international foundations.
“At first I was crying so much and worried about the future of the twins, but now that I know they are going to get surgery, I’m extremely delighted,” Ms. Cho said Friday. Attempts to reach Dr. Gho or Min family members in Singapore were unsuccessful.
Before leaving Seoul, Mr. Min said, “The Korean government should have treated its people and children,” as his wife echoed his words. “We should not have to get on a plane and take a long journey to get medical help from foreign countries.”


by Kim Hae-noon
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