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

Nico Varela in Health & Wellness December 2025 • 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.

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.

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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Everything You Need To Know

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.

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.

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.

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.

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.