Once-Conjoined Twins, Now 12, Are Thriving

A Filipino woman who gave birth to conjoined twins has thanked the New York doctors involved on the 10th anniversary of the boys’ separation.

During a celebration Monday at Montefiore Medical Center, Arlene Aguirre said she put all her trust and hope in the hospital’s surgeons.

“When they were born, the doctors at home told me, ‘You have to choose which one is to live,’” Aguirre said. “I said, ‘I cannot choose that.’ The doctors here did not ask me to choose.”

The 12-year-old twins have not had equal outcomes. Clarence Aguirre is close to being a normal preteen. But his brother Carl has trouble walking and talking.

The boys attended the celebration and guests watched a video of Clarence dancing. Now 12, the twins 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 the Bronx hospital, 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.”

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 on  medical visa, 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.

This article appeared in print on page 14 of the August 7th, 2014 edition of Hamodia.