Page 8 n THE ASIAN REPORTER U.S.A. August 18, 2014 A decade on, separate lives for once-conjoined twins By Jim Fitzgerald Photo/Montefiore Medical Center The Associated Press AP Photo/Kathy Willens S CARSDALE, New York — One twin uses an iPad, plays video games, and dances to Michael Jackson tunes. The other has significant, possibly permanent, problems walking and talking. The delicate separation 10 years ago of conjoined twins from the Philippines wasn’t perfect, but the mother of the boys says their very survival is reason enough to celebrate the anniversary. “When they were born, the doctors at home told me, ‘You have to choose which one is to live,”’ Arlene Aguirre said. “I said, ‘I cannot choose that.’ The doctors here did not ask me to choose.” The boys, now 12, were born joined at the top of their heads, unable to sit up, stand straight, eat normally — or see each other. Once their case was accepted by the Children’s Hospital at Montefiore Medical Center in New York City, leaving Carl and Clarence conjoined was not an option. “If they hadn’t come to us when they did, they would have just withered away and died,” said Dr. Robert Marion, the boys’ pediatrician. “I am extremely proud of having been a part of this. I’m a little disappointed with some of the outcome but, clearly, to see how these kids have survived and are for the most part thriving, is really wonderful.” Montefiore’s president and CEO, Dr. Steven Safyer, said, “We are honored to have played a part in helping these boys develop into the unique individuals they are today.” The boys were separated on August 4, 2004, in an operation that climaxed a then-unusual “staged separation” that required four surgeries over nine months. When it was over, Dr. David Staffenberg, the boys’ plastic surgeon, told the mother, “You’re now the mother of two boys.” Aguirre, who never left the area after the operation and now raises the boys in Scarsdale, New York, said she throws quiet twin, and Arlene Aguirre said, “He feels like he’s the big brother. He likes to read to Carl, and he’s very patient.” Both boys still wear helmets to protect their skulls. Goodrich said that once they are fully grown, the skulls will be patched. Arlene Aguirre said, “I did the right thing,” when she accepted Montefiore’s offer to do the surgery — and absorb the multimillion-dollar cost. And caring for her sons alone — she’s a single mother — is getting easier as the boys grow up in their white house behind a picket fence off a busy road. She has a support network of friends who come over on weekends to stay with the boys while she buys groceries and runs errands. With Montefiore’s support, the family lives in the U.S. on a medical visa. They have not been back to their hometown of Salay in the Philippines — and Arlene Aguirre said she misses her family. She hopes that she and her sons can eventually become American citizens. “The boys are Americans, really,” she said. “They don’t want my Filipino food. They like spaghetti, mashed potatoes — and McDonald’s, of course.” SUCCESSFUL SEPARATION. Arlene Aguirre, center, plays with her formerly conjoined 12-year-old twin sons, Clarence, left, and Carl, right, at the family’s home in Scarsdale, New York. The family celebrated the 10th anniversary of the risky surgery in which the boys were separated at Montefiore Hospital, where the surgery was initially performed. Pictured in the right photo, a December 8, 2004 file photo, are Clarence, left, and Carl sitting upright unassisted while playing. birthday parties twice a year — on April “bye” and “thank you.” He spends the 21, the day they were born, and on school day in classes for kids with multiple August 4. disabilities and gets occupational, “The historical treatment was basically physical, and speech therapy. to sacrifice one to save the other,” said the She said Clarence, who can be difficult to lead surgeon, Dr. James Goodrich. “The understand when he speaks, also gets staged separation turned out to be some special instruction in communica- obviously very successful.” tion. But unlike Carl, he is an attention- He and his team have since separated seeking preteen who leaps up to high-five four other sets of joined-at-the-head twins visitors and is quick to show them his in London, Melbourne, and Riyadh. favorite video games. The Aguirre boys shared a “bridge” of “He’s kind of a delightful kid,” said brain, five or six centimeters long, which Marion, who is chief of genetics at the had to be divided. “When you get beyond Children’s Hospital. “I think he’s going to one centimeter or two centimeters, one or be a typical adult.” both kids takes a hit,” Goodrich said. Clarence shows tenderness toward his Eventually there was some q degeneration of Carl’s right parietal lobe, which controls the left side, Goodrich said. Carl suffered seizures, now controlled with Continued from page 5 He presented an animated video medication, and has limited use of his left showing a type of white blood cell called a Medical experts reject this. arm and leg. macrophage breaking down a chrysotile “All types of asbestos fiber are causally Carl uses a wheelchair and leg braces, implicated in the development of various fiber and carrying it out of the lungs. and there’s hope he’ll eventually be able to diseases and premature death,” the “We have defense mechanisms. Our walk on his own, though Goodrich doubts Societies of Epidemiology said in a 2012 lungs are remarkable,” Bernstein said. there will be a full recovery. Other studies indicate, however, that position statement. As for speech, his mother said he can chrysotile collects in the membrane lining Russia now provides most asbestos on utter just a word or two at a time, such as the world market. Meanwhile, rich nations the lungs, where the rare malignancy q are suffering health and economic mesothelioma develops and chews through the chest wall, leading to Nepal gay community parades for same-sex marriage consequences from past use. American businesses have paid out at excruciating death. rallies and lobbying political parties for Continued from page 4 Research such as Bernstein’s frustrates least $1.3 billion in the largest collection of the 27.5 million population is 14 or the change. The group’s founder became personal injury lawsuits in U.S. legal retired U.S. assistant surgeon general Dr. Nepal’s first openly gay legislator, while younger. history. Billions have been spent stripping Richard Lemen, who first advocated a chrysotile ban in 1976. “It is not going to dent the culture or the group has also opened a travel agency asbestos from buildings in the west. “His presentation is pretty slick, and religion,” Acharya said at his temple in the for gay tourists advertizing wedding and Umesh Kumar, a roadside vendor in mountainous capital. “If two people are honeymoon packages on Mount Everest, Bihar’s capital, has long known there are when he puts it on animation mode, people the world’s tallest peak. happy then no one should say anything.” health hazards to the 10’ x 3’ asbestos think: Wow, he must know what he’s Analysts say Nepal’s gay community Thousands of people lined the narrow, cement sheets he sells for 600 rupees ($10) talking about,” Lemen said by telephone cobblestoned streets of Kathmandu’s old was among the first groups to demand each. But he doesn’t guide customers to the from Atlanta. Asbestos plant city to watch those parading with rainbow- recognition, along with the country’s 800 rupee tin or fiberglass alternatives. In Vaishali, the permit for the asbestos colored balloons and banners along the ethnic minorities, when autocratic rule “This is a country of poor people, and for plant was cancelled by Bihar’s chief half-mile route, from the tourist hub of transitioned to democracy. less money they can have a roof over their “These groups were finally able to voice heads,” he said. minister last year. But Indian officials Thamel to the city’s central square. remain divided and confused about the Some of the revellers wore the their demands and concerns,” said Keshab Asbestos conference traditional dress of their ethnic Poudel, editor of Spotlight magazine. The two-day asbestos conference in risks. India placed a moratorium on new communities. Many others were painted in “Nepal is mostly a liberal society, and December was billed as scientific, though people are able to absorb and digest new organizers admitted they had no new asbestos mining in 1986, but never banned makeup and wearing cross dress. use of the mineral despite two Supreme And some on the sidelines disapproved. values with ease.” research. In 2007, gay rights activists won a legal “Whatever happens inside closed doors One could say they’ve gone back in time Court orders. The position of Prime Minister should remain there,” said retired case with the country’s Supreme Court to defend asbestos. government worker Raja Sharma, 62. ordering the scrapping of all laws that The Indian lobby’s website refers to 1998 Narendra Modi’s new government is homosexuality and WHO guidelines for controlled use of unclear. “This is ridiculous, marriage is a sacred decriminalized Meanwhile, Vaishali’s resistance has thing between a husband and wife that has discriminated on the basis of sexual chrysotile, but skips updated WHO advice worked for centuries, and it should be left identity. from 2007 suggesting all asbestos be sparked other protests, including in the “Gay rights activists were able to banned. Its executive director, John nearby district of Bhojpur. alone. Nepal has enough problems.” “Many people are not aware of the Still struggling with poverty, achieve without much political support. It Nicodemus, dismissed the WHO update as effects, especially the illiterate,” said unemployment, and poor infrastructure, was all because of their advocacy and “scaremongering.” Nepal has leapt forward in granting rights activism,” said Kapil Shrestha, a political Many of the speakers are regulars at Madan Prasad Gupta, a village leader in to gays and minorities, becoming the first science professor at Tribhuwan University asbestos conferences in the developing Bhojpur, sipping tea at the roadside tea shop he built decades ago when he had no South Asian nation to decriminalize in Kathmandu. world. While Nepal’s political parties have said homosexuality in 2007 as the country Toxicologist David Bernstein said that idea what asbestos was. Over his head: a broken, crumbling embraced democracy and secularism they agree same-sex marriage should be while chrysotile could cause disease if legal, it is unclear when they might agree inhaled in large quantities or for prolonged asbestos cement roof. following centuries as a Hindu kingdom. “We have come a long way, but it is time and vote on the overall constitution after periods, so could any tiny particle. we finally legalize same-sex marriage,” years of failing to do so amid political Bernstein consulted for the Quebec-based said Monica Jha, who heads the Blue bickering. Prime Minister Sushil Koirala Chrysotile Institute, which lost its Canadian government funding in 2012. Diamond Society credited with organizing has promised to finish the work this year. Asbestos pushed in Asia as product for the poor