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Conjoined Aguirre twins from the Philippines helped rewrite medical history with a series of operations at Montefiore Medical Center a decade ago that separated them, but struggle with disabilities
Jane Lerner, email@example.com 7:29 p.m. EDT August 3, 2014
Clarence and Carl Aguirre were the rarest of conjoined twins — joined at the skull. They were separated 10 years ago, in a first-of-its-kind series of successful operations at Montefiore Medical Center in the Bronx.
Clarence and Carl, who turned 12 in April, will attend a party Monday at Montefiore to mark the anniversary.
The decade has been marked by both joyous milestones and the acceptance that both boys — Clarence has fared better than his identical twin, Carl — will always struggle with disabilities.
"I never regret that they had the surgery," said their mother, Arlene, as Clarence, the stronger of the two boys, danced around the Scarsdale apartment the family shares. "It saved them."
She made the trip from the Philippines to New York after doctors told her they didn't think they could save both boys. Montefiore donated all medical care and continues to support the family.
On the cusp of adolescence, both boys have wispy hints of mustaches. They continue to wear helmets to protect their fragile skulls.
Each attends a special education program in Westchester through the Board of Cooperative Educational Services.
Clarence is quick to greet a stranger, offering his hand for a high-five. His speech is hard to understand and his mother said he receives regular speech therapy and other services to strengthen the right side of his body.
He likes to swim and hang out with his best friend, Hector.
Carl, who developed a seizure disorder after the surgery, can say a couple of words. His mother said he communicates with his eyes and by pointing. He can take a step or two with assistance, but spends most of his time lying down.
His seizures have decreased from a dozen a day to two or so every day. It's hard for him to move the left side of his body. He wears diapers and sleeps in a crib-like bed in the small room he shares with his brother.
"Carl took the hit," said Dr. James Goodrich, chief of pediatric neurosurgery and co-leader of the surgical team that separated the boys 10 years ago.
The surgeons had to cut through some of the brain that the boys shared, which is likely responsible for the youngsters' disabilities. Without surgery, the odds that boys would have lived to their fifth birthday were 10 percent, Goodrich has said.
He is pleased with their progress, which he thinks will continue.
"There is a lot of plasticity in the brain," he said.
The boys have grown new bone to cover their reconstructed skulls, he said. They might still need more surgery to fill in sections. The helmets could come off in another couple of years when they are done growing.
Goodrich pioneered a technique involving a series of operations to separate craniopagus (joined at the head) twins instead of one marathon surgery. The Aguirre boys had three operations before the 17-hour August 2004 surgery that separated them.
Since then Goodrich and Dr. David Staffenberg, a plastic surgeon who operated on the children, have consulted on 15 similar cases throughout the world.
Goodrich said five families decided to go ahead with surgery. The others either did not want the surgery or the children could not have been separated.
"We did five surgeries and had 10 good outcomes," he said.
The Aguirre surgery focused attention on Montefiore Medical Center, which has since made a push into the Lower Hudson Valley. The Bronx system now owns hospitals in Mount Vernon and New Rochelle and is developing partnerships with White Plains Hospital and Nyack Hospital.
The hospital continues to provide support for Arlene Aguirre, a single parent, and her children.
Aguirre was a nurse in the Philippines. But she has been unable to work in this country because of visa problems. She recently took a test to be a registered nurse in New York, but narrowly failed.
She doesn't drive and spends her days in her small apartment, owned by a charitable organization, with the boys. It's been more than 10 years since she has visited the Philippines or seen her parents.
She talks to her mother on the telephone and sometimes uses Skype. Clarence and Carl do not speak or understand Tagalog, the language of their native country.
Sometimes she catches Clarence staring a picture on the wall of himself and his brother when they were still conjoined.
"I don't know how much he understands about what happened," she said. "Maybe someday he will."
Webmasters Note: Dr. Goodrich is a life member of the Westchester County Detachment Marine Corps League