Montefiore in the News
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Montefiore in the News

May 20, 2005

New York City, NY (May 20, 2005) -- Nine months after their historic separation surgery at The Children's Hospital at Montefiore (CHAM), three-year-old formerly conjoined twins Carl and Clarence Aguirre are doing "extremely well medically,” according to Robert Marion, MD, the boys pediatrician and director, Center for Congenital Disorders, CHAM. 

"Slow speech development is our only real concern," said Dr. Marion during a news conference at CHAM today. “What they really need are haircuts," he said, "because they haven't had one since they were separated nine-and-a-half months ago and it's gotten kind of wild.”

A day earlier, David A. Staffenberg, MD, chief of Pediatric Plastic Surgery, CHAM, had supervised fitting the boys with custom-made helmets created from detailed MRI images of each boy's skull and specific head shapes.  "These will protect the tops of their heads much better now that they are older and have discovered the joys of roughhousing," said Dr. Staffenberg.  "They will also help us slowly begin to reshape their heads."

The custom-fitted and -shaped helmets, called DOC bands, are typically used for the non-surgical correction of abnormal head shapes in infants.  For Clarence and Carl, the helmets now replace the bulky bandages that have been protecting the tops of their heads where they had been conjoined.  Once they were separated, neither boy was left with a complete skull. 

"Craniofacial surgery to reconstruct the missing bone is not in the immediate future," said Dr. Staffenberg, "because the benefits from therapy far outweigh the benefits of reconstructive surgery at this time.  Clarence and Carl are soaking up information and really accelerating in occupational and physical therapy.  We feel that surgery should wait.”  

"Remarkably, both boys have added about two new inches of skull bone generated by their own bodies' healing processes," said Dr. Staffenberg.  "This is an unusual amount of natural growth for boys their age."  

"Clarence and Carl continue to receive aggressive physical, occupational and speech therapy at Blythedale ChildrenÂ’s Hospital, and they have made great strides in motor development," said Dr. Marion.  "They can stand with support and can walk a few steps with a walker.  Both are avid tricyclists."

“We expect them to take their first steps unassisted in a month or two,” said Dr. Marion.  "This is excellent progress, because the boys have been receiving therapy for only nine months after their final separation surgery and it generally takes one year for babies to learn to walk."

The doctors all said the boysÂ’ language skills are lagging a bit;  they are not speaking sentences but do say words including "pick up," "thank you" and "hi." 

"In the meantime, I notice that they are very good about making their wishes known without language," said James T. Goodrich, MD, PhD, director, Division of Pediatric Neurosurgery, CHAM.  "Clarence and Carl are very clear about when they want something and there is no mistaking what it is they want."  The boys also communicate in sign language, and their language development challenges are being addressed through speech therapy as well as surgery.

“When we suspected that their lagging language skills might be linked to hearing loss, we addressed that,” said Dr. Marion.  A few weeks ago, the boys each underwent surgery at the hands of Sanjay Parik, MD, a pediatric otolaryngologist at CHAM, who implanted tiny tubes in their ears, a common procedure that relieves pressure and fluid build up.  Doctors and the boys' mother have already noticed improvements in both boys.

"While the boys are medically ready for surgery today, reconstructive surgery of their skulls will probably not take place until the fall," according to Dr. Goodrich. "We are shooting for it, but it's not a set timetable."

"We timed each of their separation surgeries based on when they were best for Clarence and Carl in terms of their overall health and development at the time," said Dr. Goodrich.  "We will continue to operate with this as our guiding philosophy.  It has served the boys very well so far."