Warf with the Ugandan hospital’s first five surgical patients
In 2000, Benjamin Warf sold his house and a small farm in Kentucky and left his position as Chief of Pediatric Neurosurgery at the University of Kentucky. After giving away most of their possessions, Warf, his six children, and his wife boarded a plane for Uganda, believing they were leaving the United States for good.
It was the beginning of an extraordinary six-and-a-half-year journey, fraught with violence, racism and difficult living conditions. Warf, at the age of 42, quickly went from being a respected neurosurgeon with many friends to being the strange white man people pointed to and laughed at on the street. But it was his life-long dream to bring high quality medical care to the developing world.
“I knew when I was a young person,” says Warf, now the director of Neonatal and Congenital Anomalies within the department of Neurosurgery at Children’s Hospital Boston, “that medical mission work was something I was meant to do.”
Warf was slated to be the director of a new pediatric hospital in Mbale, Uganda, built by the Christian non-profit, CURE International. At the time, there were no pediatric neurosurgical hospitals and few trained neurosurgeons in all of Africa – where high birth rates, poor perinatal care and very large numbers of children create an extraordinary need for qualified pediatric specialists.
When the hospital opened eight months after Warf arrived, he saw a “river of children coming through the gate.”
The obstacles to providing quality care were immense. The nursing staff were poorly trained, lacking even training in CPR or proper drug dosing. Some equipment was ancient — lacking a CT scanner, Warf “got really good” at doing cranial ultrasounds with an old obstetric ultrasound machine.
But the rewards were equally profound. There was no shortage of surgical work, and Warf also quenched his thirst for research. When the hospital received an unlimited supply of low-cost shunts, Warf performed a randomized trial and one-year follow-up with patients from the hospital, proving that the cheaper shunts – at $35 each — worked just as well as their $650 counterparts.
Warf teaches Ugandan surgeons a technique that treats hydrocephalus without shunts
It was the first of many surprising and groundbreaking studies Warf would publish based on his work at the hospital. He also developed and trialed a new, minimally invasive surgical procedure to treat infant hydrocephalus, a buildup of cerebrospinal fluid (CSF) in the brain. Shunts, the usual U.S. treatment, often fail and must be fixed quickly. But in Africa, getting back to a neurosurgeon is rarely possible. Instead, Warf’s procedure combines endoscopically reducing the tissue inside the brain that produces the fluid with another procedure called endoscopic third ventriculostomy, which creates a small opening allowing the trapped fluid to escape and to be absorbed normally.
Doctors at Children’s Hospital Boston are now employing this combined procedure in selected infants, allowing hydrocephalus to be treated without a shunt – and bringing a technique created from dire necessity in the developing world into high-tech Western medicine.
Living in Uganda made an indelible impact on Warf’s family. In the evenings, he read to his children over candlelight, gathered around a big table. Having less made the family closer.
There were also serious challenges. His family often had no running water, electricity or any reliable way to contact friends and family back home. There was no safety net, like decent hospitals or police. Robberies of ex-pats were frequent and violence was a constant concern. One of the family’s friends was murdered.
The transition was hardest for his daughter, Sarah, now 19 years old, who is severely affected by neurofibromatosis. In many African cultures, disability and deformity are seen as curses, and even some adults were cruel to her.
In spite of the difficulties, Warf says his time in Uganda was the highlight of his career. Now the hospital is self-sustaining, performing about 1,000 pediatric neurosurgical operations every year. The doctors he trained, including the current medical director, neurosurgeon John Mugamba, continue working at the hospital.
“I worked myself out of a job,” says Warf.
But that was the goal. “I was able to do more good there in six years than in 20 years of practice in the U.S.”
Warf’s strong ties to Uganda haven’t frayed. He returns at least once a year to train surgeons in the hydrocephalus technique and oversees research projects on a daily basis. He is collaborating with CURE International on a new venture, “CURE Hydrocephalus,” a network of hydrocephalus treatment centers in developing countries.
Though most of Warf’s children are now grown, they have never forgotten their time in Uganda. Perhaps his daughter Sarah, who attends a special needs school in Massachusetts, has benefited the most from the family’s return to the states. Her struggle to receive the proper care and treatment in Uganda mirrors the plight of the many ill and disabled Ugandan children Warf is still trying to help.
