One day some weeks ago, a young mother of a seven-month-old baby from Jharkhand called in tears, about her child who was born with a large lump on his back and was unable to move his legs. Local doctors did not give her any information about the problem that her newborn had, and were also not responsive about treatment options.. The infant seemed otherwise normal, and in the first six months was growing as any other child, except for paralysis of his lower limbs. He smiled, recognised his parents and was a great source of joy for the entire family. But his diagnosis and treatment had remained unknown to the parents. They were not informed that this birth defect is called Spina Bifida and is the commonest birth defect in India. Nor were they aware that this serious condition can potentially be prevented by taking a folic acid tablet periconceptionally. And most of all, they were not aware that there are several medical and surgical treatments for children born with this condition.
Understanding Spina Bifida
Spina Bifida is a birth defect of the spinal cord that causes serious childhood paralysis and occurs in more than 25,000 children in India each year, making the country home to one of the highest prevalence rates of this condition in the world. And yet, awareness about it remains scarce.
The range of paralysis in Spina Bifida patients varies from mild weakness in the feet to complete paralysis from the hip downwards, resulting in many patients being wheelchair dependent right from early childhood. Additionally, affected children may have associated problems such as excessive water in the brain (hydrocephalus), urinary and bowel incontinence (lack of control) and orthopaedic issues such as club feet, and other medical problems.
Though many children become paraplegic and incontinent, there is no intellectual impairment: they are capable of leading independent and productive lives, if they are able to access expert medical care. However, in India, medical care is not available to over 75% of children with Spina Bifida.
Spina Bifida, therefore, can be a devastating condition for those affected by it, as well as for their families.
Meaningful efforts missing
What is both tragic and unpardonable, is the fact that despite the knowledge that Spina Bifida can be largely prevented with a B complex vitamin (folic acid), awareness regarding this simple and inexpensive intervention continues to remain lacking..
Since 1991, the fact that pre-conceptional intake of folic acid by women can prevent more than 70% of Spina Bifida cases has been known, after the results of the Medical Research Council (MRC) Vitamin Study were published in The Lancet. Yet, 30 years later, India is one of the few countries where no meaningful efforts to create awareness about this intervention have been carried out — both at the level of States and the Centre. This gap has resulted in thousands of children in India being born with serious childhood paralysis, causing great socio-economic distress to a multitude of families.
While it is understood that in unplanned pregnancies awareness about pre-conceptional vitamins may not be given, the lack of any effort to educate the public about this common, devastating and preventable condition cannot be termed anything less than gross public health negligence.
Global efforts, research
Many countries across the world have conducted national awareness campaigns and initiated programmes to create awareness in order to prevent of Spina Bifida through folic acid supplementation. Additionally, 68 countries have made fortification of relevant food vehicles, with folic acid, mandatory by law. In these countries, awareness campaigns and food fortification have reduced the prevalence rates of Spina Bifida to below 1 per 1,000 births by eliminating folic acid preventable cases. In India, in contrast, the prevalence rate remains unacceptably high, at about 4 per 1,000, primarily because no such efforts have been undertaken.
Research is now ongoing to study the fortification of food vehicles such as salt and tea that are widely and uniformly consumed – especially in countries such as India. A preliminary trial for tea fortification (results of which were published in BMJ Nutrition, Prevention & Health) found that tea could potentially be vehicle for fortification with folate and vitamin B12 in India, in order to help eliminate haematological and neurological complications.
The message
Spina Bifida places enormous socio-economic burdens on families, societies and the healthcare system in India. Each rupee spent on prevention in this regard can help save more than 100 rupees required for treatment and rehabilitation.
It is time for a national awareness campaign about Spina Bifida and how it can be prevented. Simultaneously, efforts must be made to explore food fortification with folic acid and vitamin B12. It is only efforts such as these that will contribute toward the primary prevention of Spina Bifida and anencephaly, averting stillbirths, and under-five deaths due to these birth defects says Vijaya Kancherla, director, Center for Spina Bifida Prevention (CSBP) at Emory University, U.S.
Until every woman in our country knows that a folic acid tablet, taken before conception and during pregnancy, can help prevent Spina Bifida and until our healthcare systems are in place to comprehensively help families with affected children, the work remains incomplete.
(Dr. Santosh Karmarkar is a paediatric surgeon based in Mumbai and founder-trustee of Spina Bifida Foundation. santoshjk@yahoo.com Sneha Sawant is social worker and chief coordinator of Spina Bifida Foundation. sneha.ccsbf@gmail.com)
Published – January 05, 2026 10:59 am IST
