NEW YORK – Ten years after that fateful day in August 4, 2004, the once conjoined twin brothers Carl and Clarence Aguirre celebrate another milestone in their separate lives. The boys, now 12, were born conjoined at the top of their heads when their case was accepted at the Children’s Hospital at Montefiore (CHAM) in the Bronx for a delicate surgery — one that involved three operations before the 17-hour that separated them.
At age 2 when they arrived in New York in September 2003, they “were dying from complications of their condition. Doctors believe that without the surgery, both boys would have died within 6-9 months.They were unable to sit up or eat normally. Today, following the surgery, Clarence and Carl are happy 12-year-old boys, enjoying time in the seventh grade. While Carl loves playing video games, eating ice cream and playing with his brother, Clarence is very outgoing and active, and enjoys swimming, dancing and singing.
“We are thrilled to commemorate the 10 year anniversary of one of the first successful staged separations of craniopagus twins in the world, also known as twins joined at the heads. The surgery was groundbreaking and our knowledge from the procedure has helped guide similar successful surgeries around the world,” said James T. Goodrich, M.D., Ph.D., D.Sci. (Hon.), director, Pediatric Neurosurgery, CHAM and professor, Clinical Neurological Surgery, Pediatrics and Plastic and Reconstructive Surgery, Albert Einstein College of Medicine, who led the CHAM surgical team that separated the children.
According to CHAM, one in two and a half million live births are craniopagus. CHAM also said that according to documented medical history, the Aguirre boys were among the first set of twins to undergo a successfully staged separation. Their delicate separation surgeries, performed in four stages over a period of 10 months, represented a new approach to an especially devastating medical condition. Since then, this method has been replicated around the world and has become the standard of care for all such procedures.
“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.
Since the Aguirre twins’ successful surgery 10 years ago, Dr. Goodrich and the CHAM team have consulted on 15 sets of twins. Five sets of twins have since gone to have staged separation procedures successfully in London, Melbourne and Saudi Arabia. A few of the surgeries that Dr. Goodrich has consulted on couldn’t move forward due to the way in which the brain was conjoined, since surgery can be risky if too much of the brain is shared between twins. While the surgical technique has been refined over the past 10 years, Dr. Goodrich has consulted with surgeons on how to modify it or in some cases, recommended not to proceed based on how the twins are joined.
“We are honored to have played a part in helping these boys develop into the unique individuals they are today,” said Steven M. Safyer, M.D., president and CEO of Montefiore Medical Center. “Our thanks to the family for their confidence in us and to the brilliant interdisciplinary Montefiore team that has worked so hard to take care of them. It is with great pride that we mark the 10th anniversary of this trailblazing surgery.”
Due to CHAM’s multidisciplinary, team-based approach, staged surgeries to separate craniopagus twins has now become the recommended standard of care for neurosurgeons, accepted by both the Congress of Neurological Surgeons and the European Society of Pediatric Neurosurgeons.
Dr. Goodrich believes the key to success in separating craniopagus twins is the staged procedure, which allows the twins’ vascular system and veins to recover between each operation. In fact, a review published in the journal Brain and co-authored by Dr. Goodrich looked at the outcome of 41 craniopagus surgeries and found a death rate of 63 percent for single stage operations, compared with 23 percent for multiple-stage operations. If left untreated, 80 percent of craniopagus twins die by age two. Articles describing Dr. Goodrich’s work in the Aguirres’ case have been published in medical journals including Craniofacial Surgery, Brain: A Journal of Neurology and Journal of Neurosurgery.
“The doctors at Montefiore saved the lives of my sons and I am so grateful for every moment spent with them,” said Arlene Aguirre. “While they have distinctly different personalities, it is heartwarming to see them interacting, with Clarence acting as a big brother to Carl and helping him around the house.” She added: “Clarence shows tenderness toward his quiet twin. He feels like he’s the big brother. He likes to read to Carl, and he’s very patient.”
Carl and Clarence continue to see Dr. Goodrich twice a year for check-ups in addition to seeing a pediatrician and neurologist at Montefiore on a regular basis. While the boys are still wearing helmets to protect their heads, doctors are optimistic that their bone will become more fully developed and there will soon come a time when they no longer need them.
The hospital continues to provide support for the family. Arlene, a single parent, was a nurse in the Philippines. Due to her medical visa, she has been unable to work here. She recently took a test to become a registered nurse in New York and nearly passed it. She has built a network of friends who come over on weekends to stay with her sons while she buys groceries and runs errands.
They live in a small apartment in Scarsdale, owned by a charitable organization. She has not gone home to visit her hometown in Silay, in the Philippines to see her parents since she and her sons came here in 2003. However, she communicates with her mom on the telephone or through Skype.
Clarence and Carl are entering 7th grade. Both are in a BOCES program in the Scarsdale school system where they receive services such as speech therapy and physical therapy for Carl.
Arlene Aguirre said, “I did the right thing,” when she accepted Montefiore’s offer to do the surgery – and absorb the multimillion-dollar cost.
-With reports from AP and The Journal News
PHOTO CAPTIONS AND CREDITS
PHOTO 1: Formerly conjoined twins Carl, left, and Clarence Aguirre play with their mom, Arlene, on Thursday in the playroom of their home in Scarsdale, Westchester County. (Photograbbed from the Frank Becerra Jr./Journal News)
PHOTO 2: Early days (AP Photo)