By David Cruz 

In the ten years that’s passed, 12-year-old twin Clarence Aguirre has picked up some serious dance moves. In a video presentation, Clarence is seen showing off the robot dance, which slowly morphed to an electronic hip-hop routine to the tune of will.i.am’s “I’m Alive.”

It’s a fitting song given the celebration of Clarence and his twin brother Carl, siblings once vertically conjoined at the skull and partially the brain, a condition known as craniopagus. The malformation is reported to occur in one or two babies a year. Their lives would’ve been different or probably cut short if not for a series of complex surgeries that ultimately separated them.

This year marks ten years since the groundbreaking operation that’s since been etched in medical textbooks, serving as a great leap forward for craniopagus operations and a major hallmark to the Children’s Hospital at Montefiore, where the procedure was performed.

“I was scared,” said Arlene, the boys’ mother, a native of the Philippines, attending an event that paid tribute to the surgery and recovery. “I was in a different country, but I put my faith and trust in the doctors.”

The Aguirres met with medical staffers on Monday, August 4, ten years to the day of the final surgery.

The event also served as a reminder of the milestone CHAM achieved, agreeing to take on the surgery that came with high-level risks. In many cases, the procedure’s success rate is poor, often leading to death given the complications linked to the operation.

“This is something that had never been done successfully,” said Dr. Steven Safyer, president and Chief Executive Officer of Montefiore Medical Center, who was the hospital’s chief medical officer at the time. “What made us so happy was we succeeded.”

Taking On The Case
The Aguirre case stretches back to 2002 in the Philippines where doctors told Arlene, a single mother, that the boys were attached by the skull and brain.

“I knew this was a trial that God gave to me,” said Arlene of her boys condition. “So I told myself that I would do everything I can to help and save my boys.”

The unusual attachment left the boys bed-ridden, unable to properly digest or see one another.

“They would always have formula in their mouth so their teeth kind of rotted,” said Dr. Robert Marion, the boys’ pediatrician since they were toddlers. “So it was clear that there was no way these two would survive if they were left the way they were without separation.”

Arlene sought help from Children’s Chances, a Connecticut-based nonprofit that linked them to Montefiore Medical Center.

What followed was a logistical breakdown over how to execute the surgery. Dr. James Goodrich, CHAM’s director of pediatric neurosurgery and the lead surgeon behind the procedure, decided the surgery should work piecemeal, applying a “staged separation” surgery that fragments what would be a 30-hour procedure. It would allow for the twins to regain their strength for the next set.

“The staging principle is basically if you think of a rotisserie, it’s four quadrants around the head,” said Dr. Goodrich. “And you just work your way each quadrant, separated at a time.

“I listened to the doctors and to their plan, how they plan to approach this,” recalled Dr. Safyer. “And it was logical, it was sensible, and it was a story I could believe it.”

Behind Dr. Goodrich was a cooperative of anesthesiologists, radiologists, nurses and other medical staff members that provided input into how to successfully proceed. In many ways, the team had entered uncharted medical territory—combining all these types of care for one procedure was rarely done.

For Dr. Goodrich, the key hurdle involved carefully snipping the blood vessels that comprise the brain’s vasculature.

Four surgeries passed over a length of nine months. Dr. Goodrich’s fellow plastic surgeon, Dr. David Staffenberg, would later tell Arlene that she “has now two separated boys.”

With Arlene that day was Meredith Gosin, a social worker with Blythedale Children’s Hospital where the boys were recuperating in between surgeries. She helped tend to their recovery and care while the twins recovered.

“To be a part of that was a gift,” said Gosin.

Post Surgery

The surgery broke barriers for craniopagus procedures, with Dr. Goodrich having performed several of these types of surgeries around the world.

“We’ve learned that the staging technique versus single separation clearly works the best and gives you the best outcome,” said Dr. Goodrich, adding the procedure has now become the national and international standard for these types of surgeries.

These days, the two boys have developed distinct personalities. Clarence, the more outgoing twin, has learned how to dance, swim and assume the big brother role to Carl, who largely bore the brunt of limitations with seizures and an inability to walk.

Both are confined to wearing a heavy-duty helmet for now until the next stage of grafting can be done to cover a portion of their skulls. “When they finish their growth they’ll have surgery to conclude that and they won’t need their helmet,” said Dr. Marion.

Visits to CHAM are yearly. The boys still haven’t missed the chance to stop by Dr. Safyer’s office.

“They come by and say hello to me,” said Dr. Safyer.

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Welcome to the Norwood News, a bi-weekly community newspaper that primarily serves the northwest Bronx communities of Norwood, Bedford Park, Fordham and University Heights. Through our Breaking Bronx blog, we focus on news and information for those neighborhoods, but aim to cover as much Bronx-related news as possible. Founded in 1988 by Mosholu Preservation Corporation, a not-for-profit affiliate of Montefiore Medical Center, the Norwood News began as a monthly and grew to a bi-weekly in 1994. In September 2003 the paper expanded to cover University Heights and now covers all the neighborhoods of Community District 7. The Norwood News exists to foster communication among citizens and organizations and to be a tool for neighborhood development efforts. The Norwood News runs the Bronx Youth Journalism Heard, a journalism training program for Bronx high school students. As you navigate this website, please let us know if you discover any glitches or if you have any suggestions. We’d love to hear from you. You can send e-mails to norwoodnews@norwoodnews.org or call us anytime (718) 324-4998.