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Decade on, separate lives for once-conjoined twins



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

Join the discussion

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aaldrew August 05 2014 at 11:08 AM

Glad they both survived. Thank God.

Flag Reply +25 rate up
2 replies
nedsabbagh aaldrew August 05 2014 at 12:58 PM

Maybe if there really was a GOD they wouldn't have been born like this and have to live the lives they live now. Your GOD has a strange way of showing love fro his children.

Flag Reply +1 rate up
6 replies
milliebsp aaldrew August 05 2014 at 3:35 PM

nedsabbagh and Dan ...

I believe children such as these boys are put on this earth to teach us lessons.

CLEARLY you two have never learned a DAMN thing!!!

Flag Reply +1 rate up
dewlady357 August 05 2014 at 12:20 PM

The joyful face on the mother of these boys and the grins on the boys faces says it all. Thank God for medical science. Yes, there are trying times ahead, but obviously they are all aware of that and will take each day as it comes. God bless them and the medical team that made this beautiful picture happen.

Flag Reply +20 rate up
1 reply
CAMERON dewlady357 August 05 2014 at 1:24 PM

Yes.

Flag Reply 0 rate up
Janice August 05 2014 at 11:37 AM

God bless them and have a good long life.

Flag Reply +17 rate up
Rhoda August 05 2014 at 11:55 AM

I love hearing good news. Bless them.

Flag Reply +14 rate up
2 replies
Sue Rhoda August 05 2014 at 1:04 PM

And Rhoda, it appears you need glasses, because DAN posted 6 nasty comments. I flagged each one, but I doubt ahol will take the off.

Flag Reply +1 rate up
3 replies
donpantanella Rhoda August 05 2014 at 3:07 PM

Sue, Dan can't help that he is a turd. He was born a turd and the doctors were unable to change him into a real human.

Flag Reply +1 rate up
Jimmy August 05 2014 at 12:16 PM

Bless their hearts. Couple of little cute'. May they have a long and wonderful life with each other.

Flag Reply +11 rate up
1 reply
Linda Jones Jimmy August 05 2014 at 1:57 PM

I think you need glasses. There is nothing cute about these two deformed beings.

Flag Reply +1 rate up
10 replies
juanmpuertas August 05 2014 at 12:08 PM

ONE MORE AMERICAN MIRACLE .HAPPY FOR THEM GOD BLESS

Flag Reply +10 rate up
gracecampbell59 August 05 2014 at 12:16 PM

It is good to have a super power country like the US with their sophisticated tech. and caring people to help people in need like these twins. God bless this nation!

Flag Reply +10 rate up
1 reply
jerimalibu gracecampbell59 August 05 2014 at 12:33 PM

I'm glad they both survived, especially when she refused the heart wretching decision to "pick one." I just don't get why these Countries don't care for their own. They should be ashamed of themselves.

Flag Reply +1 rate up
phpoling August 05 2014 at 12:23 PM

May they live a long happy full lifes ahead of them! Hope they will become American Ciztzens soon!

Flag Reply +9 rate up
2 replies
trinity2320 phpoling August 05 2014 at 1:15 PM

Than has nothing to do with the miracle.
They need to live in their country.

Flag Reply +1 rate up
2 replies
Patrick trinity2320 August 05 2014 at 1:59 PM

OK,you've had YOUR opinion BUT the kids aren't YOUR children!

Flag 0 rate up
MICHELLE trinity2320 August 05 2014 at 2:29 PM

This is their country. Life in the US is the only life they have ever known!

Flag 0 rate up
Beth phpoling August 05 2014 at 6:56 PM

its great the hospital did the surgery at no cost...who is footing the rest of the bills for them??? my tax dollars???? she's a single mom w special needs kids...go bk to ur country.....

Flag Reply +2 rate up
Willie August 05 2014 at 12:27 PM

Good to read a happy story.

Flag Reply +8 rate up
kittyzena August 05 2014 at 12:03 PM

They are truly blessed.... However, I'm just waiting for the Trolls to start spewing their "I-hate-these-handicapped-kids" vomit.

Flag Reply +7 rate up
5 replies
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