Decade on, separate lives for once-conjoined twins

Before you go, we thought you'd like these...

Decade on, separate lives for once-conjoined twins
Arlene Aguirre, center, plays with her formerly conjoined twin sons, Clarence, left, and Carl, 12, at the family's home in Scarsdale, N.Y., Thursday, July 31, 2014. On Monday, Aug. 4, the family will celebrate the 10th anniversary of the risky surgery in which the boys were separated at Montefiore Hospital, where the surgery was initially performed. (AP Photo/Kathy Willens)
Arlene Aguirre, center, plays with her twin sons, Clarence, left, and Carl, at the family's home in Scarsdale, N.Y., Thursday, July 31, 2014. On Monday, Aug. 4, the family will celebrate the 10th anniversary of the risky surgery performed that separated the formerly conjoined twins at Montefiore Hospital in the Bronx, where the surgery was performed. (AP Photo/Kathy Willens)
Co-surgical team leader Dr. James T. Goodrich, center left, and his team operate on conjoined twins, Carl and Clarence Aguirre, at the Children's Hospital at Montefiore Medical Center in the Bronx, N.Y., Wednesday, Aug. 4, 2004. Doctors, who began at 10am operating on the two-year-olds from the Philippines, decided to go ahead with the final separation surgery Wednesday. (AP Photo/Montefiore Medical Center, Alice Attie)
Clarence, right, and Carl Aguirre, conjoined twins from the Philippines, play during a their second birthday party Wednesday, April 21, 2004, at Blythedale Children's Hospital in Valhalla, N.Y. The two-year-old boys have undergone three major surgeries. Although they remain conjoined, the Philippine boys are showing positive health indicators. (AP Photo/Gregory Bull)
FILE. In this Sept. 9, 2003 file photo provided by Philippine Airlines, 17-month-old Filipino twins Carl, left, and Clarence Aguirre wait at Manila's International airport before their flight to New York. When they were born joined at the head, their mother remembers doctors in the Philippines telling her that she would have to choose which one would live and which would die. But ten years ago doctors at Montefiore Medical Center in the Bronx were able to save both boys in an operation done in 2004. (AP Photo/Philippine Airlines, File)
Formerly conjoined twins Clarence, left, and Carl Aguirre, 12, embrace while relaxing with their mother Arlene at the family's home in Scarsdale, N.Y., Thursday, July 31, 2014. On Monday, Aug. 4, the family will celebrate the 10th anniversary of the surgery that separated the twins at Montefiore Hospital in the Bronx, where the surgery was performed. (AP Photo/Kathy Willens)
Carl Aguirre, 12, poses for a photograph at his home in Scarsdale, N.Y., Thursday, July 31, 2014, with his mother Arlene. On Monday, Aug. 4, Carl, his twin brother Clarence and their mother will celebrate the 10th anniversary of the surgery that separated the formerly-conjoined twins. (AP Photo/Kathy Willens)
Clarence Aguirre, 12, poses for a photograph at his home in Scarsdale, N.Y., Thursday, July 31, 2014. On Monday, Aug. 4, Clarence, his twin brother Carl, and their mother Arlene will celebrate the 10th anniversary of the surgery that separated the formerly-conjoined twins. (AP Photo/Kathy Willens)
Clarence Aguirre, 3, walks with Julie Knitter, right, Blythedale Children's Hospital occupational therapist, at the end of a media briefing at The Children's Hospital at Montefiore in the Bronx borough of New York Monday Sept. 26, 2005. The briefing updated the media on the progress of formerly conjoined twins Clarence and his brother Carl who came from the Philippines for the operations that separated them. Clarence began walking unsupported late August 2005. (AP Photo/Tina Fineberg)
Formerly conjoined twins Clarence Aguirre, left, and Carl Aguirre, center, prepare to leave the Blythedale Children's Hospital in Valhalla, N.Y., with their mother Arlene Aguirre, right, Tuesday, Oct. 18, 2005. The 3-year-old Filipino twins and their mother are to live in Westchester County, New York, according to a spokeswoman for County Executive Andrew Spano. (AP Photo/Jennifer Szymaszek)
Clarence Aguirre, 3, right, plays as his mother Arlene Aquirre, second from right, stands by and his twin brother Carl, second from left, rests in the arms of Blythedale Children's Hospital physical therapist Mara Abrams, during a media briefing at The Children's Hospital at Montefiore in New York Monday Sept. 26, 2005. The briefing updated the media on the progress of formerly conjoined twins from the Philippines. Clarence began walking unsupported in late August 2005. Seated center is Joelle Mast, MD, Blythedale Children's Hospital chief medical officer. (AP Photo/Tina Fineberg)
Clarence Aguirre, 3, standing foreground, holds his mother Arlene Aquirre's hand, left, as his twin brother Carl, third from left, rests in the arms of Blythedale Children's Hospital physical therapist Mara Abrams, second from left, during a media briefing at The Children's Hospital at Montefiore in the Bronx borough of New York Monday Sept. 26, 2005. The briefing updated the media on the progress of formerly conjoined twins Clarence and Carl who came from the Philippines for the operations that separated them. Clarence began walking unsupported late August 2005. Seated from right are Julie Knitter, Blythedale Children's Hospital occupational therapist, and Joelle Mast, MD, Blythedale Children's Hospital chief medical officer. (AP Photo/Tina Fineberg)
Occupational therapist Julie Knitter has her hands full with formerly conjoined twins Clarence, left, and Carl Aguirre, during a therapy session at Blythedale Children's Hospital Wednesday, July 27, 2005 in Valhalla, New York. The 3-year-old Filipino boys are wearing custom built plastic helmets so that the rebuilding of their skulls can be postponed and they can stay in therapy designed to get them walking and talking. (AP Photo/Julie Jacobson)
Formerly conjoined twins Carl, left, and Clarence Aguirre, spend time working with their physical therapists Mara Abrams, far left, and Barbara Milch at Blythedale Children's Hospital Wednesday, July 27, 2005 in Valhalla, New York. The 3-year-old boys are wearing custom built plastic helmets so that the rebuilding of their skulls can be postponed and they can stay in therapy designed to get them walking and talking. (AP Photo/Julie Jacobson)
Arlene Aguirre, center, tells stories about her son Carl, as she sits with Carl's twin brother Clarence, 12, at the family's home in Scarsdale, N.Y., Thursday, July 31, 2014. On Monday, Aug. 4, 2014, Montefiore Hospital and the family will celebrate the 10th anniversary of the risky surgery that separated the boys, who were born as conjoined twins. (AP Photo/Kathy Willens)
Formerly conjoined twin Clarence Aguirre walks on his own at the Blythedale Children's Hospital in Valhalla, N.Y., as he prepares to leave with his brother Carl Aguirre and mother Arlene Aguirre (not shown), Tuesday, Oct. 18, 2005. The 3-year-old Filipino twins and their mother will live in Westchester, N.Y., while they continue occupational and nutritional therapy at Blythedale. It's another milestone for the brothers, whose separation last year is considered a major success. There have been no serious complications. (AP Photo/Jennifer Szymaszek)
Previously conjoined twins Clarence, left, and Carl Aguirre, right, celebrate their third birthday with mother Arlene Aguirre, center, at Blythedale Children's Hospital in Valhalla, N.Y., Thursday, April 21, 2005. Less than eight months after their dramatic separation, the two boys are slowly catching up to children their own age and are impressing doctors and therapists with their good spirits. (AP Photo/Karen Vibert-Kennedy)
Previously conjoined twins Clarence, left, and Carl Aguirre, right, celebrate their third birthday at Blythedale Children's Hospital in Valhalla, N.Y., Thursday, April 21, 2005. The twins, orginally from the Philippines, were born April 21, 2002, joined at the tops of their heads. They were separated on August 4, 2004. (AP Photo/Karen Vibert-Kennedy)
Arlene Aguirre, center, holds her two conjoined twin boys Carl and Clarence, as they try to blow out candles on birthday cakes marking their second year Wednesday, April 21, 2004. At left is pediatric neurosurgeon James Goodrich, and at right is social worker Meredith Gosin. The boys have undergone three major surgeries. Although they remain conjoined, the Philippine boys are showing positive health indicators. (AP Photo/Gregory Bull)
Clarence Aguirre, left, embraces his twin brother Carl while relaxing at the family's home with their mother Arlene in Scarsdale, N.Y.,Thursday, July 31, 2014. On Monday, Aug. 4, the the formerly-conjoined twins, now 12, are celebrating the ten year anniversary of the risky surgery that separated them. The surgery was performed in four stages at Montefiore Hospital in the Bronx. (AP Photo/Kathy Willens)
of
SEE ALL
BACK TO SLIDE
SHOW CAPTION +
HIDE CAPTION


By JIM FITZGERALD

SCARSDALE, N.Y. (AP) -- 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 boys' mother 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 the Bronx, 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, who plans to be at the hospital Monday to mark the separation anniversary. "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 Aug. 4, 2004, in an operation that climaxed a then-unusual "staged separation" that took 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, said she throws birthday parties twice a year - on April 21, the day they were born, and on Aug. 4.

"The historical treatment was basically to sacrifice one to save the other," said the lead surgeon, Dr. James Goodrich. "The staged separation turned out to be obviously very successful."

He and his team have since separated four other sets of joined-at-the-head twins in London, Melbourne and Riyadh.

The Aguirre boys shared a "bridge" of brain, 5 or 6 centimeters long, that had to be divided. "When you get beyond 1 centimeter or 2 centimeters, one or both kids takes a hit," Goodrich said.

Eventually there was some degeneration of Carl's right parietal lobe, which controls the left side, Goodrich said. Carl suffered seizures, now controlled with medication, and has limited use of his left arm and leg.

Carl uses a wheelchair and leg braces, and there's hope he'll eventually be able to walk on his own, though Goodrich doubts there will be a full recovery.

As for speech, his mother said he can utter just a word or two at a time, such as "bye" and "thank you." He spends the school day in classes for kids with multiple disabilities and gets occupational, physical and speech therapy.

She said Clarence, who can be difficult to understand when he speaks, also gets some special instruction in communication. But unlike Carl, he is an attention-seeking preteen who leaps up to high-five visitors and is quick to show them his favorite video games.

"He's kind of a delightful kid," said Marion, who is chief of genetics at the Children's Hospital. "I think he's going to be a typical adult."

Clarence shows tenderness toward his 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're 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."

---

Online: Children's Hospital at Montefiore, http://www.cham.org

Read Full Story

People are Reading

The Latest from our Partners
1 - 3 of 15