Montefiore in the News
Formerly Conjoined Twins Celebrate a 'Miracle' Fifth Birthday
Staged Surgery Becomes International Model for Craniopagus Separations
New York City, NY (April 20, 2007) - Formerly conjoined twins Carl and Clarence Aguirre celebrated their fifth birthdays today at a party hosted by the medical team that successfully separated and cared for them at The Children's Hospital at Montefiore (CHAM).
Doctors recalled that the boys were already slowly dying from complications of their condition when they arrived here from the Philippines in September 2003. Since they were separated, the boys have experienced remarkable physical and cognitive development as a direct result of the surgeries and specialty medical care that has been provided for them.
"In reviewing the history of conjoined twins, it is very rare to see craniopagus twins live to the age of five. Even more rare and perhaps unique is to see a set of twins undergo a separation without developing further neurological injury, and this has been the case in this surgical separation," said James T. Goodrich, MD, PhD, director of pediatric neurosurgery at CHAM, who, with David A. Staffenberg, MD, chief of pediatric plastic surgery, led the CHAM surgical team that separated the boys.
The Aguirres' case is now recognized as the first-ever separation of craniopagus twins, or twins joined at the heads, where both twins survived with no neurological damage or deficit incurred from the surgery. Their delicate separation surgeries, performed in four stages over a period of 10 months, represented a novel approach to an especially devastating medical condition.
"It's pretty much a miracle that Carl and Clarence are alive and happy, their mother is happy, and they are developing well," said Robert Marion, MD, the boys' pediatrician at CHAM. "Without the precedent-setting neurosurgical and plastic surgical operations and other care they have had at Montefiore, it is highly unlikely that they would have even survived this long. And now, they are off to kindergarten in the fall!"
CHAM Surgeries Establish New Standard of Care
Historically, neurosurgeons and plastic surgeons attempted to separate conjoined twins in single, marathon operations lasting many hours. The typical outcome was that one or both often died, and of those who lived, all have done so with severe neurological and physical handicaps and other debilitating medical conditions.
Because of the CHAM team's approach, the Aguirre twins emerged from the series of surgeries with no new neurological deficits. 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 outcome, Drs. Goodrich and Staffenberg have been in demand throughout the world as lecturers, and they have also consulted with a surgical team in Europe on a recent successful separation of craniopagus twin girls using the staged procedure. They are currently working closely with a team at Rainbow Babies Hospital in Cleveland, OH, on a staged separation of craniopagus twins expected to begin sometime this spring. Articles describing their work in the Aguirres' case have been published in medical journals including Craniofacial Surgery and Brain: A Journal of Neurology.
Outlook is Positive for Carl and Clarence
"The twins have retained their distinctly individual personalities," said Dr. Goodrich. "Clarence is still a ham. He runs around like a bandito. Carl was always the shy one, and holds back more."
Both boys are still wearing blue helmets to protect the tops of their heads from normal roughhousing and playtime activity. "We have not performed surgery to complete cranial reconstruction of their skulls because we do not want to interrupt their developmental gains with additional hospital stays," said Dr. Staffenberg. "The boys' native bone continues to grow on its own. We are letting the boys' own bodies dictate when to perform more reconstructive surgery."
The boys' physicians agree that while they are doing exceptionally well, they are not quite at the level of typical five year olds. "They lived as conjoined twins for more than two years, and they definitely lost time, developmentally, as a result," said Dr. Goodrich. Dr. Marion put it another way: "Are they delayed in their development? Yes. Will they be able to catch up? All indications are, yes."
"Their progress to date is extremely encouraging," said Dr. Staffenberg. "In every new contact I have with Carl and Clarence, I see how far they are coming along. It is a thrill to watch them growing up as two independent little boys."
One of the most technically advanced children's hospitals in the world, The Children's Hospital at Montefiore provides advanced and specialized medical treatment for children from New York City and around the world. The 106-bed hospital, opened in October 2001, has floors designed by age rather than therapeutic area for the best psychosocial outcomes. CHAM treats all major children's illnesses and is committed to providing family-centered health care in a nurturing environment that extends well beyond its walls.
Montefiore Medical Center, The University Hospital and Academic Medical Center for the Albert Einstein College of Medicine, is internationally recognized as a leader in patient care, research, teaching, and community service. Montefiore provides treatment programs for patients with all major illnesses and has distinguished centers of excellence in women's health, children's health, heart care, cancer care, and surgery.
The Children's Hospital at Montefiore is located at 3415 Bainbridge Avenue in the Bronx. Its telephone number is (718) 741-CHAM (2426).