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New York City, NY (April 21, 2004) -- Along with a dozen of their pediatric patient pals who donned party hats, Carl and Clarence Aguirre, the Filipino conjoined twins, celebrated their second birthdays with a party today.
Iridescent bubbles and colorful balloons filled the air and up to 150 friends, care givers, media representatives and the boys’ mother, Arlene, sang “Happy Birthday.” Amid cheers, the boys’ neurosurgeon, James T. Goodrich, MD, director of Pediatric Neurosurgery at Montefiore Medical Center, cut one of two chocolate birthday cakes he baked himself for the twins.
The boys were celebrating not only their birthdays, but also beating the odds and living until their second birthdays, according to Dr. Goodrich. He said that historically, craniopagus (joined at the head) twins who are untreated have odds of only 50-50 to live until two years of age.
The twins have had three surgical procedures at the Children’s Hospital at Montefiore (CHAM) since they arrived in the United States in September, 2003. A multi-disciplinary surgical team at CHAM is preparing for a fourth, and hopefully final, separation procedure some time this summer.
To prepare for the very risky procedure, physicians will be conducting special diagnostic MRI studies to calculate the volume of blood flow in the cranial veins and arteries of the twins.
Special attention to blood flow is necessary because the one major potential complication for this final separation surgery is severe brain swelling caused by damaged blood vessels, according to Dr. Goodrich.
Next month, Montefiore surgeons, led by David Staffenberg, MD, chief of Plastic Surgery at CHAM, will insert tissue expanders as a preparation for that final operation. The tissue expanders, small pouches gradually filled with saline to stretch the skin, will be placed just above the left ears at the base of the scalps of each twin, away from the sites of the earlier surgeries. The extra skin, which will include scalp hair, will be used to cover the exposed scalp areas when the twins heads are separated.
Robert Marion, MD, director, Center for Congenital Disorders at CHAM, reported that the first DNA tests ever on conjoined twins have confirmed that Carl and Clarence, who have completely different personalities, weights and medical histories, are monozygotic (identical) twins, originating from the same egg.
“This is amazing to me as a geneticist,” said Dr. Marion, “and gives you pause to think that genetics plays so little of a role in what makes up these two kids.” Carl is larger, more serious and somber and has hypotension, while Clarence is notoriously outgoing and bubbly and has hypertension.
Physicians, occupational therapists and physical therapists at the Blythedale Children’s Hospital, in Valhalla, NY, where the birthday party was held, enthusiastically reported that the twins are “happy, healthy and delightful” and are showing a range of improvements beyond a 50 percent weight gain since their arrival in the US.
For example, their communications skills are blossoming: Carl can now say five words: “hi”, “bye”, “up”, “down” and “mama”; and he mimics the words to “Itsy Bitsy Spider.”
Motor skills are also improving through the help of therapy and specially made strollers and swings. They can both take off their socks and shoes and are “eager to experience the world in an upright position,” according to Blythedale Physical Therapy Director Barbara Milch. Therapists have helped the twins to assume a near sitting position and have introduced them to cups, for drinking.
Some of the twins’ more rambunctious ambitions, such as pulling themselves up the crib and arching their backs into a quasi-standing position, are “nerve wracking,” said Dr. Goodrich, who was concerned about potential injuries.
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