Clark University - Clark News summer 2005
Alumnus helps give children a new life (summer 2005)
Robert Marion '74 serves as lead pediatrician for conjoined twins now separated
By Judith Jaeger
For the past one-and-a-half years, Robert Marion '74 has had his hand in a miracle. Marion is the lead pediatrician for Carl and Clarence Aguirre, conjoined twins who were separated with great success at the Children's Hospital at Montefiore (CHAM) in New York City.
"I can't tell you how proud I am," says Marion, director of the Center for Congenital Disorders at CHAM. "It's like working with a miracle, and everyone involved feels this way. It's been an amazing and gratifying experience."
Carl and Clarence, who celebrated their third birthday in April, were born in the Philippines joined at the tops of their heads. This rare type of conjoining is called craniopagus, Marion explains. The twins shared a two-inch section of brain tissue, skull bone, dura mater (the protective lining around the brain) and blood vessels that took blood to and from their brains. Their mother, Arlene Aguirre, found CHAM neurosurgeon James Goodrich through an international children's aid agency. Marion says that Goodrich got approval from CHAM and Blythedale Children's Hospital in New York, where the twins receive rehabilitation care, to take the case pro bono. Marion remembers seeing Carl and Clarence for the first time when they arrived in New York in September 2003. The twins were 17 months old.
"It was a very dramatic experience to see two children attached at the head like this. It was like a kick in the gut."
Preparing for surgery
A clinical geneticist who specializes in caring for children and adults with genetic disorders and congenital malformations, Marion became the boys' pediatrician. He immediately recognized their need for significant medical attention before any surgery could be performed. Because the twins could not sit upright, they had to be fed lying down, Marion explains. This left them malnourished and caused chronic pnuemonias from formula pooling in their throats and lungs. The same problem caused cavities in their teeth, he adds, which increased their chances of infection. Clarence also had severe hypertension and both were significantly developmentally delayed because their physical movement was limited to rolling from side to side.
Marion and the medical team addressed these issues by feeding the twins high-calorie formula through tubes, which allowed them to gain weight and also stopped the pneumonias and any new cavities. They removed several of the boys' baby teeth and brought Clarence's hypertension under control. Clarence's heart was pumping blood to and from both of their brains, Marion explains, which caused the hypertension and also made Clarence much smaller than Carl because he was using more calories to take care of both brains.
‘Really a miracle'
According to Marion, separating craniopagus conjoined twins usually involved performing a single, mammoth, multiday operation, and—until Carl and Clarence—there had never been a case in which both twins survived without brain damage. Marion says the neurosurgeon decided to do the procedure in stages, in hopes that between surgeries, Carl's brain would develop its own system of blood vessels to feed and drain blood from his brain. The first of four procedures happened in October 2003. The final procedure took 17 hours on Aug. 4 and 5, 2004. Although all previous tests showed that the twins were not connected at the brain, Marion says it was during this final procedure that the surgeons discovered the two-inch section of shared brain tissue. The surgeons evaluated the situation, he recalls, but determined that they were too far into the procedure to halt it. The twins were separated and spent three weeks in intensive care—in separate beds for the first time.
"Since that time, they've been making steady progress," says Marion, describing how their distinct personalities continue to develop, how they play and argue and "do normal things any twin brothers would do." Back in May, he expected the boys to be walking soon.
"It's really a miracle. When they came to us, they had no prognosis; if left alone in the Philippines, they would certainly have died within six months. Now, here they are, a year-and-a-half later, ready to lead full, independent lives."
Life beyond medicine
Marion traces his medical career—and a writing career that includes five nonfiction books and a novel—straight back to Clark.
"The reason I'm a medical geneticist is because of my experience with Dr. Timothy Lyerla and the Biology Department."
His wife, Beth Schoenbrun '74, had the same experience and went on to earn a degree in genetic counseling. She currently teaches high-school biology, chemistry and applied science. Marion and Schoenbrun have fond memories of Clark and greatly value their Clark education.
"The background that I received at Clark has allowed me to have a life that is more than just about being a doctor," says Marion, explaining that premedical education at other colleges is much narrower. "It has allowed me to approach my life in a more well-rounded way."
|
 |
|
Clarknews Summer 2005
|
|
|
 | Robert Marion '74 with Carl and Clarence Aguirre and their mother Arlene Aguirre on the twins' third birthday. Photo courtesy of Montefiore Medical Center |
|
|
