The Asian reporter. (Portland, Or.) 1991-current, August 18, 2014, Page Page 8, Image 8

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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
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
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
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
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
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
a type of white blood cell called a
Medical experts reject this.
arm and leg.
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
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
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
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.
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
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.”
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
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
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.
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