Monrovia — The John F. Kennedy Medical Center (JFKMC) Neurosurgical Unit, under the Department of Surgery and in partnership with NeuroKids, has, for the first time in Monrovia, joined the global community in observing World Hydrocephalus and Spina Bifida Day.
The celebration, held on Saturday, October 25, 2025, at the JFK Medical Center’s main lobby, focused on raising awareness, promoting prevention, and improving care for people living with these conditions in Liberia.
It brought together heads of the hospital’s surgical departments, nursing directors, representatives from NeuroKids, members of the Monrovia Medical and Professional Lions Club, and the hospital’s Chief Medical Officer, Dr. John Emmanuel Tamba, among others.
World Hydrocephalus and Spina Bifida Day was established by the International Federation for Spina Bifida and Hydrocephalus (IF) at its General Assembly in Guatemala in 2011. The first observance took place on October 25, 2012, in Strasbourg, France.
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The day is dedicated to raising awareness and helping people understand spina bifida and hydrocephalus, the challenges individuals and families face, and the need for greater access to prevention, treatment, and social support.
Spina Bifida is a congenital condition in which the spine and spinal cord do not form properly during early pregnancy, a neural tube defect that may cause partial or full exposure of spinal nerves and vertebrae. Also, Hydrocephalus, commonly referred to as “water on the brain,” occurs when excess cerebrospinal fluid builds up in the brain’s ventricles, causing pressure and potential damage. It can occur alongside spina bifida or independently.
In Liberia, children born with these conditions often face stigma. Many communities wrongly label them as “gena,” meaning “child of the devil.” Myths persist that such conditions result from supernatural causes, such as a pregnant woman bathing outdoors, allowing spirits to “enter the womb.”
As a result, some parents abandon or neglect affected children, leaving them vulnerable and sometimes discarded at dump sites.
The global day was created purposely to advocate for the rights of children and adults living with spina bifida and hydrocephalus, including their inclusion, participation, and equal access to healthcare, education, and social services.
This year’s celebration was held under the theme “Accelerate Action for Spina Bifida and Hydrocephalus.” It seeks to increase awareness and promote prevention strategies, helping communities understand that these conditions are medical, not spiritual or supernatural, and can be managed with proper care and understanding.
During the program, several mothers of affected children attended and listened to presentations explaining the causes, effects, and preventive measures associated with the conditions.
One of the mothers narrated the stigma she experienced after discovering that her child was living with the condition, noting that whenever they go out, her child often becomes the center of attention.
According to her, she initially felt embarrassed. Still, after traveling and her child undergoing surgery, she decided to ignore public opinions and focus on caring for her child, whom she described as a “warrior child.”
Speaking at the event, Dr. Alvin Nah Doe, one of Liberia’s only neurosurgeons and head of the Neurosurgical Unit at JFK, emphasized the importance of ending discrimination against affected children.
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He said, “It is wrong to consider these kids as demon-possessed, and that they should be included in society without any form of stigma or exclusion.”
Dr. Doe revealed that this was the first time World Hydrocephalus and Spina Bifida Day had been celebrated in Liberia.
He added that plans are underway to expand awareness efforts to other parts of the country where cases are more prevalent.
“With the next celebration, we hope to spread out across all counties. We intend to engage referral hospitals, teaching institutions, and local healthcare centers so that similar programs can take place nationwide,” Dr. Doe said.
However, the event marked a significant step toward changing misconceptions about hydrocephalus and spina bifida in Liberia while promoting inclusion and access to care for those living with the conditions across the country.
