A child with spina bifida in Uganda receiving support from healthcare workers and the community.

Neural Tube Defects in Uganda: Understanding the Challenges and Improving Outcomes

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Nico Varela in Health & Wellness October 2026 • 4 min read.

"A follow-up study reveals the critical need for enhanced antenatal care, coordinated treatment, and long-term support for children with neural tube defects in Uganda."


Neural tube defects (NTDs) are birth defects that occur when the neural tube, which forms the brain and spinal cord, doesn't close completely during pregnancy. These defects can lead to a range of disabilities, affecting a child’s physical and neurological development. Spina bifida, one of the most common NTDs, results in incomplete closure of the spinal cord, often causing mobility issues and other health problems.

In resource-limited settings like Uganda, the challenges associated with NTDs are magnified. Timely surgical intervention and ongoing management by specialized healthcare teams are essential, but often difficult to access. A recent study conducted at Mulago National Referral Hospital (MNRH) in Uganda sheds light on the outcomes of spina bifida patients and highlights the urgent need for improved care and support.

This article delves into the findings of the study, exploring the obstacles faced by children with NTDs in Uganda and the potential strategies to enhance their quality of life. By understanding the realities on the ground, we can work towards a brighter future for these vulnerable individuals.

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U.S. Snapshot

Neural tube defects occur when the neural tube does not close properly, and the most common types are spina bifida, anencephaly, and encephalocele. The CDC reports that spina bifida affects about 1,300 babies a year in the United States. It can occur anywhere along the spine.

Diagnosis and Clinical Considerations

Spina bifida occulta may involve only the vertebral arches; BMJ Best Practice describes it as clinically insignificant and a common incidental radiologic finding, affecting 10% of the population. Open neural tube defects include open spina bifida and anencephaly, caused by incomplete neural tube closure at about four weeks of pregnancy. For fetuses with myelomeningocele or other spina bifida anomalies, fetal exome sequencing may be considered after multidisciplinary counselling and when appropriate criteria are met. Minimally invasive fetal repair techniques aim to achieve similar benefits while reducing maternal morbidity.

Historical Evidence and Care

A verified case of spina bifida has been identified in an Egyptian mummy. Texts from Babylonia may describe neural tube defects, while ancient texts from India, Greece, and Rome discuss birth defects in different contexts. The use of selection criteria in spina bifida care dates to the late 19th and early 20th centuries, when patients with neurological impairment, hydrocephalus, or major congenital anomalies were typically excluded from surgery.

What Are the Key Findings of the Uganda NTD Study?

A child with spina bifida in Uganda receiving support from healthcare workers and the community.

The study, published in Neurosurgical Focus, examined the outcomes of children treated for NTDs at MNRH between 2014 and 2015. Researchers conducted follow-up phone surveys with caregivers to assess mortality rates, health issues, access to healthcare, and overall well-being. Here’s a breakdown of the key findings:

Prevalence and Characteristics:

  • The vast majority (92%) of the 201 patients studied were diagnosed with myelomeningocele.
  • The median age at presentation was just 6 days old, highlighting the need for early detection and intervention.
  • Half of the patients underwent surgical procedures, including defect closures, ventriculoperitoneal (VP) shunts for hydrocephalus, and endoscopic third ventriculostomy.
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Kampala Surveillance and Fortification

A hospital-based birth-defect surveillance study in Kampala examined neural tube defect prevalence in relation to maternal HIV status and antiretroviral therapy. The study reports that Uganda passed legislation in 2011 to fortify wheat and maize flour with folic acid, iron, zinc, and other B vitamins. It also notes that compliance with the fortification legislation has been reported as variable.

The Range of Possible Effects

Neural tube defects result from incomplete closure of the neural tube along its length, which otherwise forms the brain and spinal cord. Their effects can include brain damage, hydrocephalus, learning disabilities, and difficulty swallowing. Spinal cord damage can also cause severe problems involving the bowels, bladder, and legs.

Regional Prevalence Estimates

A systematic review and meta-analysis estimated the pooled prevalence of all neural tube defects in Eastern Africa at 33.30 per 10,000 births (95% CI: 21.58 to 51.34). A separate African systematic review and meta-analysis, covering 58 studies, 16 countries, and 7,150,654 participants, estimated a pooled burden of 32.95 per 10,000 births (95% CI: 29.77–36.13). These are estimates from separate reviews with different geographic scopes, and their figures differ.

Mortality Rates and Follow-Up Care:
  • The one-year mortality rate was alarmingly high at 34%.
  • Among survivors, 91% had received healthcare since their initial discharge, but only 67% returned to MNRH for follow-up.
  • Hydrocephalus was a common diagnosis, affecting 88% of patients.
  • Caregivers reported physical deficits in 39% of patients, including clubfoot (18%) and bowel or bladder incontinence (12%).
  • Access to home health resources was limited, with only 15% of patients reporting such access.

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

The study's findings underscore the urgent need for a multi-pronged approach to improve outcomes for children with NTDs in Uganda. This includes enhancing access to quality antenatal care, ensuring timely surgical intervention, providing comprehensive follow-up care, and addressing the social stigmas associated with these conditions. By working together, healthcare professionals, policymakers, and communities can create a supportive environment where children with NTDs can thrive.

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Research Directions

NICHD reports that PPB-supported researchers have validated positive outcomes of in utero surgery to repair myelomeningocele, the most severe form of spina bifida. With PPB support, researchers are also investigating techniques for diagnosing spina bifida before birth. A 2024 review discusses potential future therapeutic approaches including gene editing and regenerative medicine.

What prevention evidence can tell us

The evidence links taking folic acid supplements or a vitamin-B before conception and continuing for at least three months during pregnancy with reduced occurrence of neural tube defects. This describes an association reported across epidemiologic studies, not a measure of how much either approach changes risk in a particular population.[1]

The recommendation to fortify flour and the stated limits of the review mean that the rationale for fortification is clearer here than the certainty of its population-health effects.[2] [3]

How the prevention evidence compares

A Kampala hospital-based surveillance system excluded infants born at home and infants born at nonparticipating health centers who were referred to surveillance hospitals for follow-up. Its recorded cases therefore do not include those groups.[4]

An earlier Mulago report examined newborns for congenital anomalies and reported an incidence rate of 54 per 1,000 births. It concerns congenital anomalies generally, rather than neural tube defects alone.[5]

What prevention evidence leaves unresolved

  • How closely do reported folic acid intake patterns reflect intake before conception, during pregnancy, and after birth? The Uganda report calls for measurements across those periods to clarify actual intake.[6]
  • What effects would sensitization campaigns and health-worker training have on folic acid intake? The report identifies evaluation of those efforts as an unanswered question.[6]

Sources

  1. Birth prevalence of neural tube defects and associated risk factors in Africa: a systematic review and meta-analysis (pmc.ncbi.nlm.nih.gov)
  2. Fortification of maize flour and corn meal (www.who.int)
  3. The effects of fortification of wheat and maize flour with folic acid on population health outcomes | Cochrane (www.cochrane.org)
  4. Prevalence of neural tube defects, maternal HIV status, and antiretroviral therapy from a hospital-based birth defect surveillance in Kampala, Uganda (pmc.ncbi.nlm.nih.gov)
  5. A description of congenital anomalies among infants in Entebbe, Uganda (nru.uncst.go.ug)
  6. Prevention of spina bifida: folic acid intake during pregnancy in Gulu district, northern Uganda (pmc.ncbi.nlm.nih.gov)

About this Article -

Written with AI assistance from published research, and reviewed by the Mystum team. See our About page for more information.

Everything You Need To Know

1

What exactly are neural tube defects?

Neural tube defects (NTDs) are birth defects that occur when the neural tube, which develops into the brain and spinal cord, does not fully close during pregnancy. This incomplete closure can result in conditions like spina bifida, where the spinal cord doesn't close completely. This can lead to a range of physical and neurological disabilities. The severity of these defects varies, but they often require medical intervention and ongoing care to manage associated health issues.

2

What were the main challenges and outcomes revealed by the Uganda NTD study?

The study found that a significant number of children treated for neural tube defects (NTDs) at Mulago National Referral Hospital (MNRH) between 2014 and 2015 faced high mortality rates, with 34% dying within the first year. Among the survivors, many experienced ongoing health issues like hydrocephalus (88%), and physical deficits (39%) such as clubfoot and bowel or bladder incontinence. Limited access to follow-up care at MNRH (67%) and home health resources (15%) were also noted as significant challenges.

3

What is myelomeningocele, and how does it relate to neural tube defects?

Myelomeningocele is a specific type of neural tube defect (NTD) where the spinal cord protrudes through an opening in the back. This condition makes up the vast majority of the cases studied (92%). This protrusion can cause nerve damage, leading to mobility issues, bladder and bowel control problems, and other neurological complications. Surgical intervention is often required to close the opening and protect the spinal cord, but ongoing management and support are essential to address the long-term effects of myelomeningocele.

4

What is hydrocephalus, and how is it treated in the context of neural tube defects?

Hydrocephalus, a common condition affecting 88% of the patients, involves the build-up of fluid in the brain. This excess fluid can put pressure on the brain, leading to developmental delays and neurological problems. Ventriculoperitoneal (VP) shunts and endoscopic third ventriculostomy are surgical procedures used to drain the excess fluid and relieve pressure. While these procedures can effectively manage hydrocephalus, they require careful monitoring and may need revisions over time.

5

Why is antenatal care so important for preventing and managing neural tube defects?

Antenatal care is vital because it includes interventions such as folic acid supplementation and ultrasound screenings, which can help prevent neural tube defects (NTDs) or detect them early in pregnancy. Detecting NTDs early allows for better preparation for the child's birth and immediate medical needs. Additionally, comprehensive antenatal care can address other maternal and fetal health issues, improving overall outcomes for both mother and child. Improved antenatal care and early intervention is a crucial step to improve the quality of life for newborns.

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