Formerly conjoined twins Carl and Clarence Aguirre celebrated the tenth anniversary of their separation today with the medical team that successfully separated and cared for them at The Children's Hospital at Montefiore (CHAM).
"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.
One in two and a half million live births are craniopagus and, 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.
"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."
When Carl and Clarence arrived at Montefiore from the Philippines in September 2003, they were already dying from complications of their condition. Doctors believe that without the surgery, both boys would have died within 6-8 months. Ten years 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.
"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."
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.
CHAM Surgeries Establish New Standard of Care
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.
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.
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 Nuerosurgery.
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