October is designated as Spina Bifida Awareness Month in order to create awareness about this lifelong condition. If you don’t know what Spina Bifida is, here’s a quick read that answers your questions and tells you all you need to know about it.
What is Spina Bifida?
Spina Bifida is a birth disorder that occurs when the spine and spinal cord of a foetus do not fully develop during the embryonic period. The condition occurs during early pregnancy, and can range from mild to severe.
Early during a pregnancy, a structure called the neural tube is formed. The neural tube eventually becomes the baby’s brain and spinal cord. This tube generally closes at about four weeks or 28 days of pregnancy. When the tube does not close fully, it can leave a gap in the spine, affecting the vertebrae, spinal cord and nearby nerves. This condition is known as Spina Bifida, meaning “split spine”. It falls under the category of neural tube defects.
Types of Spina Bifida
There are three main types of spina bifida. The most serious form of the condition is myelomeningocele or open spina bifida. In this type, part of the spinal cord and nerves are exposed through a sac at the opening of the gap in the spine. The second type, meningocele, is a less common type of spina bifida that occurs when the meninges, or the protective membranes around the spinal cord, push out through the opening in a fluid-filled sac. Usually, in this type, the spinal cord has developed normally and the nerves are not affected. The third type of the condition is known as spina bifida occulta or ‘hidden’ spina bifida. This is mildest form of the condition in which one or more of the vertebrae not forming properly, resulting in a small gap. It usually does not cause any symptoms and many people with the condition are not aware that they have it.
Risk factors
The exact cause of spina bifida is not known. Genetic, environmental and nutritional factors are believed to play a role. There are however certain risk factors. These include: not getting enough folic acid during the pregnancy, taking certain antiseizure medications, uncontrolled diabetes, and a family history of neural tube defects. Obesity and increased body temperature early in the pregnancy may also be risk factors.
Signs and symptoms
Spina Bifida symptoms depend on the type of condition it is, where the opening or gap in the spine is and how big it is. In mild cases, there may be no noticeable symptoms.
In more severe cases, symptoms may include: bowel and bladder issues, back pain, weakness or lack of movement in the legs and loss of sensation in the legs. Many children may also develop hydrocephalus, which is a building up of fluid in the brain that can exert pressure on brain tissue.
How is it diagnosed and treated?
Spina bifida can generally be detected during pregnancy. Prenatal diagnosis usually happens at ultrasounds taken during the first or second trimester of the pregnancy. The second trimester ultrasound exam is important to rule out conditions that may be present at birth. In other cases, blood tests may be carried out to check for elevated levels of a certain protein that could indicate spina bifida. However, in the case of blood tests, further evaluation may still be needed to confirm the diagnosis. Amniocentesis is another test that involves taking a sample of amniotic fluid to test for genetic disorders.
Treatment for spina bifida depends on how serious the condition is. There is no cure for the condition; however, treatment options are available to manage symptoms.
Surgery is one treatment option available. Surgery may be done before birth, while the baby is still in the womb, or just after birth, for severe cases of myelomeningocele. This is done in order to close the gap in the spine and protect the developing spinal cord from being exposed. Surgery while the baby is in the womb has risks for both mother and baby, but some researchers believe it can lead to better outcomes for the baby and decrease disability. Babies with hydrocephalus may need a surgery to help drain the fluid out. Some may also require surgery for tethered spinal cords — a condition, where the spinal cord, instead of floating freely, is attached to the spinal canal.
Surgery apart, treatment options include medication and physical and occupational therapy. Medications may be prescribed for bladder and bowel management and routine tests and evaluations may be needed. Regular care is important. Physical and occupational therapy may help improve independence. Some persons may require assistive devices and mobility aids such as wheelchairs, walkers, crutches or braces.
With the correct treatment and support, many children with spina bifida can survive well into adulthood and live active, productive lives.
What is the Indian scenario?
A 2024 meta-analysis, ‘Burden of neural tube defects in India: a systematic review and meta-analysis’, in Child’s Nervous System, found that the prevalence of neural tube defects was 9.46 per 1,000 births. Another 2024 paper in the Journal of Neurosurgery, ‘Spina bifida transition care in India: strengths amidst challenges’, noted that limited surveillance studies in India suggest the prevalence of spina bifida is approximately 40 to 50 per 10,000 births. This paper also stated that it was unknown how many children survive to adulthood, but recent improvements in healthcare and education have resulted in a larger population of adults living with this condition.
The first paper notes that “there is an urgent need for comprehensive prevention strategies such as advocacy and awareness, antenatal screening for NTDs, folic acid supplementation, and food fortification.” It also highlighted the need for more research for identification and implementation of target-based region-specific interventions.
Published – October 28, 2025 07:00 pm IST
