By Mike Rwothomio

The sub-regions of Acholi, Lango, and West Nile in Uganda are confronting a significant public health challenge with over 957 reported cases of spina bifida and hydrocephalus among children, raising alarm among stakeholders. 

Spina bifida, a congenital neural tube defect characterized by incomplete closure of the spinal cord and surrounding membranes during early pregnancy, affects approximately 800 children annually in Uganda. Experts suggest that many more individuals may be silently enduring related complications.

Acan Judith Okech, a representative of AVSI, an organization providing rehabilitation services for individuals with these conditions since 1994, spoke on October 8, 2025, during a stakeholder engagement in Nebbi municipality at Gaf Apartment and Entertainment Center.

She highlighted the urgent need for collective action to address this "deep-seated yet silent" health crisis.

“West Nile, Acholi, and Lango have over 957 cases of spina bifida. We must raise awareness and provide information about these conditions affecting our communities,” Acan urged stakeholders.

According to Acan, risk factors amongst others include inadequate folic acid intake during pregnancy and environmental influences. 

“Folic acid deficiency, often due to poor dietary balance, is a significant issue. We encourage expectant mothers to deliver in healthcare facilities and urge communities to abandon harmful cultural practices that may contribute to spina bifida and hydrocephalus,” Acan advised.

Affected person file photo

The Spina Bifida and Hydrocephalus Association of Uganda (SHAU) and AVSI. are implementing launched five-year initiative in Nebbi, Gulu, and Lira to enhance awareness and address these conditions. This project, implemented through the Collective Action for Disability Project in partnership with NUDIPU Uganda and Mental Health Uganda, is funded by the Norwegian Association of Spina Bifida and Hydrocephalus (RHF) via Norway.

Financial barriers continue to exacerbate the issue, with many families unable to access treatment.

Nebbi Municipality Mayor Geofrey Ngiriker shared a personal account: “I lost my child to these complications years ago when referrals were made to Mbale. The journey was challenging, and many families lose their children due to financial constraints.”

AVSI, through its Gulu Regional Rehabilitation Center at Gulu Regional Referral Hospital, has provided comprehensive rehabilitation services to over 1,400 clients since 1994, aiming to enhance quality of life and promote community inclusion. 

Justine Kamakune of SHAU emphasized the importance of grassroots awareness.

“We have the knowledge; let’s encourage our communities to seek help instead of suffering in silence.”

SHAU recently identified two children with these conditions in Nebbi's Erussi Sub-County and Nyaravur-Angal Town Council, who are receiving surgical interventions at Mbale Regional Referral Hospital, with the organization covering surgical costs and families responsible only for transportation.

Innocent Adubu, the Male Councillor for Persons with Disabilities in Kucwiny Sub-County, Nebbi District, reported 5–6 cases of spina bifida in his area alone and called for stronger collaboration with NUDIPU to combat the condition.

Alex Judagi, LCIII Chairperson of Nyaravur-Angal Town Council, stressed collective responsibility: “We must take up the mantle and increase awareness.”

Christopher Ongom, Nebbi General Hospital Administrator, advocated for intensified community outreach and dialogue to identify and support affected children. 

Mayor Ngiriker noted that many individuals suffer silently, and urged technical staff to disseminate information through community gatherings, including churches, mosques, and funerals.

SHAU plans to conduct further training for health workers, including Village Health Teams, to improve case identification in both rural and urban settings. 

AVSI reports that spina bifida and hydrocephalus are prevalent congenital anomalies in Uganda, occurring in approximately 1 in every 1,000 live births, with a higher burden in northern Uganda.

Over six years, 5,900 children with hydrocephalus have undergone surgical interventions, offering hope to affected families.

To escalate efforts, SHAU has scheduled a comprehensive health camp for October 20, 2025, at Nebbi General Hospital. Additionally, the organization recently trained journalists in Greater Nebbi to enhance ethical reporting on spina bifida and hydrocephalus.

“We need leaders, health workers, and communities to champion dialogue and action to address these conditions,” Kamakune concluded.

Mike Rwothomio is news editor at zoomer Africa your number one grassroot informations