A distraught phone call from a young mother in Jharkhand about her seven-month-old paralysed baby captures a larger public health failure in India. Her child, born with a large swelling on the back and paralysed legs, had never been formally diagnosed, counselled, or treated. The family did not know that the condition had a name — Spina Bifida — that it is among the most common birth defects in India, that treatment options exist, or that the condition is largely preventable with something as simple as a folic acid tablet taken before pregnancy. This gap between scientific knowledge and public awareness lies at the heart of India’s continuing burden of preventable childhood disability.
What exactly is Spina Bifida?
Spina Bifida is a congenital defect in which the spinal cord and surrounding structures fail to develop properly during early pregnancy. It is part of a broader group called neural tube defects, which arise within the first 28 days after conception — often before a woman even knows she is pregnant.
In India, more than 25,000 children are born every year with Spina Bifida, giving the country one of the highest prevalence rates globally. The severity varies widely:
- Some children have mild weakness in the feet.
- Others experience complete paralysis from the hips downward.
- Many are wheelchair-dependent from early childhood.
The condition is frequently accompanied by hydrocephalus (excess fluid in the brain), bladder and bowel incontinence, and orthopaedic deformities such as clubfoot. Crucially, Spina Bifida does not impair intelligence. With timely medical and surgical care, affected children can lead productive, independent lives.
Why the condition becomes devastating in India
The tragedy of Spina Bifida in India is not only medical but systemic. Over 75% of affected children lack access to specialised care — neurosurgery, rehabilitation, urological management, and long-term follow-up. Families, especially in rural and tribal areas, often receive no diagnosis, no counselling, and no roadmap for care.
This leads to:
- Lifelong disability without rehabilitation support
- Loss of household income due to caregiving responsibilities
- Social stigma and educational exclusion
- High out-of-pocket healthcare expenditure
What could have been a manageable chronic condition becomes a cycle of poverty, neglect, and preventable suffering.
The science of prevention is well established
What makes this burden especially troubling is that Spina Bifida is largely preventable. Since 1991, following the landmark Medical Research Council Vitamin Study published in The Lancet, it has been conclusively known that periconceptional intake of folic acid can prevent over 70% of cases.
Folic acid — a B-complex vitamin — plays a critical role in early neural tube development. The window for prevention lies before conception and in the earliest weeks of pregnancy, making public awareness essential.
Despite three decades of evidence, India has not implemented a sustained national awareness campaign on folic acid supplementation for women of reproductive age.
How other countries reduced the burden
Globally, many countries have treated Spina Bifida prevention as a public health priority rather than an individual responsibility. Key interventions include:
- Mass awareness campaigns targeting adolescent girls and women
- Mandatory fortification of staple foods with folic acid
As of now, 68 countries legally mandate folic acid fortification in commonly consumed foods. These combined efforts have brought prevalence rates below 1 per 1,000 births in many regions by virtually eliminating folic-acid-preventable cases.
India, by contrast, continues to record around 4 cases per 1,000 births — a reflection of policy inaction rather than scientific uncertainty.
India’s missed opportunity on food fortification
Given India’s large number of unplanned pregnancies, relying only on pre-conception counselling is insufficient. This makes food fortification a critical complementary strategy.
Ongoing research is exploring culturally appropriate food vehicles such as salt and tea — items consumed uniformly across socio-economic groups. A preliminary trial published in BMJ Nutrition, Prevention & Health suggests that tea fortification with folate and vitamin B12 could help address both neural tube defects and broader nutritional deficiencies.
Such population-level interventions offer a cost-effective route to prevention in low-resource settings.
The economic and social case for prevention
Spina Bifida imposes heavy long-term costs on families, healthcare systems, and society. Estimates suggest that every rupee spent on prevention can save more than ₹100 in treatment, rehabilitation, and lost productivity.
As highlighted by Vijaya Kancherla of the Center for Spina Bifida Prevention at Emory University, preventing neural tube defects also helps reduce stillbirths and under-five mortality — outcomes central to India’s public health goals.
What to note for Prelims?
- Spina Bifida is a neural tube defect occurring early in pregnancy.
- Folic acid supplementation before conception prevents over 70% of cases.
- India has one of the highest global prevalence rates.
- Food fortification is a proven population-level preventive strategy.
What to note for Mains?
- Public health negligence vs. availability of scientific evidence.
- Equity issues in access to diagnosis, surgery, and rehabilitation.
- Cost-benefit rationale for preventive nutrition policies.
- Need for convergence between maternal health, nutrition, and disability policy.
Until every woman in India is aware that a simple folic acid tablet taken before pregnancy can prevent Spina Bifida — and until healthcare systems are equipped to support affected children — this remains a silent, preventable crisis rather than an unavoidable tragedy.
