A child with spina bifida walks towards a bright horizon in Uganda.

Neural Tube Defects in Uganda: Unveiling the Challenges and Charting a Path Forward

Theo Raines in Health & Wellness July 2025 • 4 min read.

"A new study highlights the urgent need for improved care and resources for children with neural tube defects in Uganda, revealing critical gaps in antenatal care, surgical access, and long-term support."

Neural tube defects (NTDs) are birth defects that occur when the neural tube, which develops into the brain and spinal cord, doesn't close completely during pregnancy. Spina bifida and myelomeningocele are among the most common NTDs, leading to a range of neurological deficits and physical disabilities.

While NTDs can be prevented with adequate folic acid intake and early antenatal care, many low-resource settings face significant challenges in providing these essential interventions. In Uganda, where access to healthcare is limited and coordinated care is lacking, children with NTDs often experience poor outcomes and face a lifelong struggle.

A recent study conducted at Mulago National Referral Hospital (MNRH) in Kampala, Uganda, sheds light on the challenges faced by children with NTDs and highlights the urgent need for improved care and resources. The study, which followed up with patients who received treatment at MNRH, reveals critical gaps in antenatal care, surgical access, and long-term support.

What Challenges Do Children With NTDs Face in Uganda?

A child with spina bifida walks towards a bright horizon in Uganda.

The study paints a concerning picture of the challenges faced by children with NTDs in Uganda. Key findings reveal:

The majority of patients (92%) were diagnosed with myelomeningocele, a severe form of NTD. The median age at presentation was 6 days, indicating delays in diagnosis and treatment. Half of the patients had documented surgeries, with 5% receiving multiple procedures. The 1-year mortality rate was alarmingly high at 34%.

Lack of Antenatal Care: Nearly half of the mothers did not have a documented gestation age, suggesting inadequate antenatal care and limited access to folic acid supplementation.
Surgical Delays: The median time to surgery was 10 days, with some patients waiting over a month for intervention. These delays can lead to increased complications and poorer outcomes.
Limited Access to Follow-Up Care: Only 15% of patients reported access to home health resources post-discharge. Many families struggle to access specialized care, assistive devices, and ongoing support.
High Rate of Hydrocephalus: Hydrocephalus, a buildup of fluid in the brain, was diagnosed in 88% of patients at follow-up. This highlights the need for close monitoring and timely intervention to prevent neurological damage.
Poverty and Stigma: Many families face financial constraints and cultural stigmas that hinder their ability to provide adequate care for their children with NTDs.

These findings underscore the urgent need for a comprehensive and coordinated approach to NTD care in Uganda, addressing the gaps in antenatal care, surgical access, and long-term support.

The Path Forward: Improving Outcomes for Children with NTDs in Uganda

Addressing the challenges of NTD care in Uganda requires a multi-faceted approach that involves strengthening antenatal care, improving surgical access, and providing long-term support for affected children and their families. Increased awareness, education, and community-based rehabilitation programs are also crucial to combat stigma and promote inclusion.

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Everything You Need To Know

What are Neural Tube Defects (NTDs) and why are they a concern in Uganda?

Neural Tube Defects (NTDs) are birth defects occurring when the neural tube, which develops into the brain and spinal cord, doesn't fully close during pregnancy. Spina bifida and myelomeningocele are common examples. In Uganda, NTDs are a major concern because of the limited resources and healthcare access. The study highlights poor outcomes for children, including neurological deficits and physical disabilities, compounded by issues like delayed diagnosis and treatment, and lack of follow-up care.

What specific healthcare gaps were identified by the study at Mulago National Referral Hospital (MNRH) in Kampala, Uganda, concerning children with NTDs?

The study at Mulago National Referral Hospital (MNRH) revealed critical gaps in the care of children with NTDs. These included inadequate antenatal care, as evidenced by the lack of documented gestational age for many mothers, which also implied limited folic acid supplementation. There were also surgical delays, with some patients waiting a month for intervention. Moreover, the study highlighted limited access to follow-up care, high rates of hydrocephalus, and the impact of poverty and stigma on families' ability to provide adequate care.

How does the lack of antenatal care impact the outcomes for children with NTDs in Uganda, according to the study?

The study indicates that the lack of antenatal care has significant consequences for children with NTDs in Uganda. Without adequate antenatal care, mothers are less likely to receive essential interventions like folic acid supplementation, which is crucial for preventing NTDs. The lack of documented gestational age suggests that many mothers did not receive the necessary prenatal check-ups. This deficiency in antenatal care can lead to delayed diagnosis, insufficient early intervention, and, ultimately, poorer outcomes for children with NTDs.

What is the significance of the high 1-year mortality rate and the prevalence of hydrocephalus among children with NTDs in Uganda?

The high 1-year mortality rate of 34% indicates a dire situation for children with NTDs in Uganda, reflecting the severity of the condition and the challenges in providing adequate care. It underscores the urgency of addressing the gaps in healthcare. The high rate of hydrocephalus (88%) at follow-up is also very significant. Hydrocephalus, the buildup of fluid in the brain, can cause neurological damage, requiring close monitoring and timely intervention, such as surgery or shunts. The prevalence of hydrocephalus, in conjunction with the high mortality rate, highlights the need for immediate and comprehensive intervention strategies.

What steps are needed to improve outcomes for children with NTDs in Uganda?

Improving outcomes for children with Neural Tube Defects (NTDs) in Uganda requires a comprehensive and coordinated approach. This includes strengthening antenatal care to ensure access to folic acid and early diagnosis. Surgical access needs to be improved to reduce delays in intervention. Long-term support for affected children and their families is crucial, encompassing specialized care, assistive devices, and ongoing support. Additionally, increased awareness, education, and community-based rehabilitation programs are necessary to combat stigma and promote inclusion. Such a multi-faceted approach, addressing gaps in antenatal care, surgical access, and long-term support, is essential for improving the lives of children with NTDs in Uganda.