CARL & CLARENCE AGUIRRE, my famous nephews

SCARSDALE, N.Y., Nov. 1 — It had all the trappings of a Cinderella story. Carl and Clarence Aguirre, impoverished Filipino twins conjoined at the top of their heads, arrived in New York in 2003, sick and malnourished, and after a series of death-defying operations, emerged late one night on separate gurneys — fragile, sedated and bandaged, but each with his own life.
The tale captivated the public and generated headlines around the globe. “Dateline NBC” chronicled the boys’ journey; one newspaper hailed the surgeons as miracle doctors; and the twins’ mother, Arlene Aguirre, appeared on CNN and on the “Today” show. She repeatedly expressed her gratitude for the medical care, attention and good wishes her children received at the Children’s Hospital at Montefiore Medical Center in the Bronx. And always, she smiled.
Four years later, the cameras are gone, but the Aguirres are not. The twins need more surgery, and it can only be performed here. And Ms. Aguirre is alone, contemplating the uncertainties of the future and struggling to care for her boys, who are still in diapers even though they are 5.
Carl can speak a few words, but they are often unintelligible, and he cannot walk on his own because of an impaired left side; he crawls with his right knee and arm, dragging his limp left limbs as he moves about the house. Clarence can walk and talk, though his speech is somewhat garbled.

The boys do not eat well, so they must be fed all night, every night. Liquid food is pumped into their bodies through tubes Ms. Aguirre attaches to an opening in their bellies. On a recent afternoon, a dozen boxes of Nutren Junior, the liquid formula they are fed as they sleep, were stacked against a wall in the kitchen.
There are also financial concerns: The family lives in a home managed by a charity, and Ms. Aguirre is not sure how much longer they will be allowed to stay. If the donations that have supported them dry up, she wonders, how is she going to provide for her sons since, as a visitor from abroad, she is not allowed to work? What if their visas are not renewed and they are forced to return to the Philippines, where they lived in a poor village with no electricity, before doctors can close the holes left in the boys’ skulls?
“I guess nobody really think, if ever we’re going to live in a community, how we’re going to survive,” she said, struggling to express herself in English.
Every year, hundreds of gravely ill children from poor countries come to the United States for life-saving medical care, but little attention is paid to what happens afterward. Many return home after surgery and go on to live healthy lives; some, though, suffer severe setbacks, in part because they return to dire living conditions and a lack of adequate care in their own countries, said Cris Embleton, co-founder of Healing the Children, a charitable organization that has brought thousands of ailing children to the United States for treatment.
The Aguirres’ case is somewhat exceptional: The boys need further treatment, which must be carried out here, but it is unclear how much longer they will be able to stay.
“Conjoined twins have a unique situation that requires people to look at other alternatives with them because it can be life-threatening to send them home,” said Ms. Embleton, who is now director of Mending the Kids International, based in Santa Clarita, Calif. “After all the work that went into getting them to the point of separation, you have to determine if it’s prudent for them to go home, and if it’s not, how they’re going to be cared for while they’re here.”
A pair of Guatemalan twin sisters who were also conjoined at the heads were surgically separated in August 2002 in California and returned home five months later. But in May 2003, they came back after one of them contracted meningitis. The twins are still in the United States, living with volunteer families; their parents visit sometimes, said Ms. Embleton, whose charity is sponsoring their stay through private donations.
Over the last two years, Ms. Aguirre, 33, has slowly cut the family’s daily ties to the doctors, nurses, therapists and social workers who had made up their safety net. The family had been living at Blythedale Children’s Hospital in Valhalla, N.Y., but in November 2005, the boys were transferred to an outpatient program, and the family had to move. Then, last August, the twins were discharged from Blythedale altogether and Ms. Aguirre had to enroll them in the public school district, though at the time she had no idea what a school district was.
Now Ms. Aguirre and her sons are caught in a vacuum, celebrating the end of the first phase of the boys’ recovery while waiting to hear when the next portion of their treatment, an operation to reconstruct the parts of their skulls that were removed in the separation surgeries, will take place. (Had they not been separated, the boys would probably not have survived their second birthday, doctors said.)
Montefiore Medical Center, where Carl and Clarence were separated, is still paying for their prescription medications and other medical supplies. Pamela Adkins, the hospital’s public relations director, said Montefiore had provided “millions and millions and millions of dollars in medical care for the boys and their mother.”

She noted that the broader issues facing the family fell outside the scope of a hospital’s responsibilities.
Residents in Scarsdale collected donations that provide a monthly food allowance of $160 for the Aguirres at a local supermarket, but it is not certain how much longer the allowance will last. Ms. Aguirre has no relatives or friends here, except for Meredith Gosin, a social worker once employed by Blythedale, and Ronald E. Feiner, a Manhattan entertainment lawyer who took pity on the Aguirres and is volunteering his time to help them. Mr. Feiner has set up a trust fund to administer cash donations made to the Aguirres; he estimates the money will be enough to cover the family’s needs for about six months.
“The operation was a miracle,” Mr. Feiner said. “The twins are alive and functioning. But, unfortunately, this is not the happy ending we all hoped for, not the perfect story we were all led to believe.”
For the last two years, Ms. Aguirre and the twins have lived in Scarsdale, in a house managed by Westhab, a charity that provides shelter for homeless families in Westchester County. The arrangement was meant to be temporary from the start, and last August, a Westhab worker told Ms. Aguirre that their home would have to be vacated by the end of the school year. Ms. Aguirre called Mr. Feiner in a panic.
“How do I find a house?” she asked him, as they recalled later in separate interviews. (After a reporter’s inquiry, a Westhab spokeswoman, Connie Elkinson, said that “the position of our president, Robert Miller, is that the family can stay at the home for as long as they need.”)
The Aguirres’ medical visas must be renewed every six months. Ms. Aguirre, who fills out the visa renewal forms with Ms. Gosin’s help, said that the last visas expired in September, and she still does not know if new ones have been approved.
“I’m so nervous and afraid,” Ms. Aguirre said. “Nobody really explained me or told me, when you come to New York, all this is going to happen.
“I see about immigrants deported on TV,” she said, “and I’m thinking, is this going to happen to us? If we don’t have visa, are we going back to the Philippines? My boys are not ready.”
Craniopagus joined twins, as twins fused at their heads are known, are rare, estimated to occur once in 10 million births. Dr. James T. Goodrich, chief pediatric neurosurgeon at Montefiore and one of the doctors who operated on Clarence and Carl, said that no more than 60 sets of craniopagus twins worldwide have undergone separation surgery, and that, in most cases, the separation was carried out in one operation. The single-operation approach, Dr. Goodrich explained, often resulted in serious neurological setbacks for at least one of the children.
After carefully reviewing the Aguirre twins’ case, Dr. Goodrich and his colleagues decided to separate them in stages and wound up performing four operations over 10 months.
Dr. Goodrich and Dr. David A. Staffenberg, a pediatric plastic surgeon who is part of the twins’ medical team, have traveled the world giving lectures about the technique they used to separate Clarence and Carl, including talks at the Royal Society of Medicine of London and at a medical conference in Brazil. They have also advised other doctors on the treatment of craniopagus twins, and last year they helped a team of British doctors separate a pair of such twins.
A section devoted to the boys on the Montefiore Web site describes the medical work as “the first-ever separation of craniopagus twins where both twins survived with no neurological damage or deficit incurred from the surgery.”
By many measures, Carl and Clarence’s separation was a success, even if the boys have progressed unequally. Clarence is learning his ABCs and spends hours in front of a computer at home, playing games that feature Diego, one of Nickelodeon’s animated stars, making his way across a dense forest.
Carl can maneuver a children’s VCR hooked to a television in the playroom, and he seemed to entertain himself turning the TV on and off. But because of his limp left side, he has to hold on to something to take a few steps. When he goes to school, he wears plastic braces on his lower legs for more stability.
“I’m sure this is related to the separation because we had to cut through the brain to get them apart and Carl took the hit,” Dr. Goodrich explained.
“We hope that he will outgrow” it, he said.
The boys wear blue helmets to protect their fragile skulls and sleep in special cribs with high bars to prevent falls.
Sometimes, when the boys are frustrated, they slap their helmets repeatedly. Late one afternoon, as Ms. Aguirre tried to get him to sit down for dinner, Clarence hit her and yelled, angrily, “Stop it! Stop it!”
The stress has taken a visible toll on Ms. Aguirre, who sat slumped on a couch one recent afternoon, bags under her eyes. When she was exasperated, she let out a short, high-pitched scream.
She has developed an ulcer, she said, and often cries herself to sleep.
“I cry, but nobody see,” Ms. Aguirre said. “I feel embarrassed to cry. If I’m going to cry, I’m like a weak person, and nobody is going to help me because I’m a weak person.”
She added, “Because of everything that’s going on with the boys, with our lives, I have to stay strong.”