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Formerly Conjoined Twins Continue to Thrive: Carl and Clarence are Now 6 Years Old

July 09, 2008: Formerly Conjoined Twins Continue to Thrive: Carl and Clarence are Now 6 Years Old

Staged Surgery Becomes International Model for Craniopagus Separations

New York City, NY (July 8, 2008) - Formerly conjoined twins Carl and Clarence Aguirre are now six years old.  They celebrated their last birthday at a small party attended by friends and members of their healthcare team from The Children's Hospital at Montefiore (CHAM) this past April 21. 

Both boys are now in school with children their own age.

At the gathering, 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 millions of dollars in surgeries and specialty medical care that has been given to them by Montefiore and Blythedale Children's Hospital. 

"No such twins in history have lived to the age of five, much less continued to develop physically, emotionally and intellectually as Clarence and Carl have," 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. 

According to documented medical history, the Aguirres' case was the first-ever separation of craniopagus twins (twins joined at the tops of their heads) where both twins survived with no resulting neurological damage or deficit. Their delicate separation surgeries, performed in four stages over a period of 10 months, represented a new 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
In the past, neurosurgeons and plastic surgeons have tried to separate conjoined twins in single, marathon operations lasting many hours.  Tragically, one or both of the twins in these cases has often died, and of those who have lived, all have done so with severe mental 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 resulting neurological damage or deficit. 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 already have consulted with a surgical team in Europe on a recent successful separation of craniopagus twin girls using the staged procedure. 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 helmets as an extra precaution to protect the tops of their heads from normal roughhousing and playtime activity.  "We have not needed to perform surgery to complete cranial reconstruction of their skulls," said Dr. Staffenberg.  "The boys' native bone in their skulls continues to grow on its own."

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. "I was invited to their birthday party and I see how far they are coming along. It is a thrill to watch them growing up as two independent little boys."

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