(BALTIMORE) — Seven-year-old Dawa Titung grew up in Nepal with a head the size of a basketball, about 10 inches larger than the average head size for children his age. He couldn’t hold his head up, and strangers would often stare at him.
His mother, Phool Titung, said her son’s head was so heavy that she needed help lifting him from his bed or carrying him.
Dawa was born with hydrocephalus, a condition in which too much fluid fills the space between the brain and the skull. The still-forming skulls of children with the condition will expand around the fluid, causing the head to grow too large.
About one in 500 children are born with hydrocephalus, according to the National Institutes of Health, and doctors can often treat the condition early in life by shunting the excessive fluid to other parts of the body.
But in Nepal, Dawa and his parents had limited access to medical care. About six months ago, a doctor on a missionary visit to their region told them that help was available from doctors in the U.S.
Dawa’s parents brought him to Johns Hopkins Children’s Center in Baltimore. Dr. Amir Dorafshar, the plastic surgeon who performed Dawa’s operation, said he had never seen a child’s head as large as Dawa’s.
“His mother was unable to do all the things that a mother should be able to do,” Dorafshar said. “Our goal was to help his family care for him more easily.”
Doctors planned an operation to make Dawa’s head smaller. But the surgery to take apart the skull is risky. Beneath the skull are very large blood vessels that feed blood to the brain. Any mistaken slice during surgery can cut those vessels, causing the patient to lose a lot of blood. Dorafshar said he told the Titungs that Dawa had up to a 50 percent chance of dying during the surgery.
To lower that risk, Dorafshar and his colleagues used computer modeling and brain imaging to plan just where the surgeons would cut the bones of Dawa’s skull and design how they could be resized and pieced back together.
“We were able to practice the surgery at our desks before we ever got to the operating room,” Dorafshar said.
On May 9, doctors put their plan into action. The delicate operation took about 12 hours.
Dr. Reid C. Thompson, chairman of neurosurgery at Vanderbilt University, said using computer modeling is an innovative approach to treating advanced hydrocephalus cases like Dawa’s, who would likely have experienced serious developmental problems or even death without the surgery.
Thompson said computer modeling technologies will likely become a larger part of modern surgery as doctors and engineers collaborate to try to make different types of operations faster and safer for patients.
After two weeks in the hospital, Dawa was released and is recovering very well. He suffers developmental delays from his condition and his head is still larger than most children’s, but his mother said caring for him will be much easier now.
“Now it’s very easy to lift him, carry him from one place to another. I can do that by myself,” Titung said. “I am very thankful.”
Copyright 2012 ABC News Radio
Susan Scutti, CNN
Sam Penrod, KSL.com
Sonia Moghe and Wayne Drash, CNN
Michael Nedelman, CNN