Today is World Spina Bifida and Hydrocephalus Day, an event which aims to raise awareness and understanding of these conditions internationally. In conjunction with the day, charities such as Shine are organising events to campaign for better access to health and social services for people affected by spina bifida and hydrocephalus, and today national buildings all over the UK will be lighting up in honour of World Spina Bifida and Hydrocephalus Day.

Spina Bifida

Spina bifida, literally meaning “split spine”, is an extremely common form of birth defect. It occurs in around 1-2 births per 1000 births worldwide, although at differing levels of severity.

It is a fault in the development of the spinal cord and surrounding bones which leaves a gap or “split” in the spine.

Spina bifida comes in a number of forms, varying in severity. The most severe, referred to as myelomeningocele or Spina Bifida Cystica is caused by a section of the spinal cord and nerves going through the gap in the spine resulting in a visible sac or cyst on the back where the gap in the spinal cord is present. This can result in nerve damage and other disabilities. This form of spina bifida will often result in hydrocephalus.

The cause of spina bifida is unknown and is still being researched. It is agreed that it is probably connected with both genetic and environmental factors.

Spina bifida is usually detected at the mid-pregnancy scan at between 18-21 weeks and further tests are then performed to confirm the diagnosis. After birth, further tests may be done to assess the type and severity of the condition. A child with myelomeningocele is usually operated on within 48 hours from birth as the surgery prevents infections and helps save the spinal cord from more damage. Some babies with spina bifida are now operated on before they are born, via keyhole surgery.

Taking folic acid supplements with vitamin B12 or three months before conception and during the first three months of pregnancy can reduce the risk of spina bifida in unborn babies.


Hydrocephalus (literally meaning: “water on the brain”) is a build up of cerebrospinal fluid in the head, resulting in the swelling of the head and brain damage. Babies can be born with hydrocephalus (congenital hydrocephalus) or it can develop after birth (acquired hydrocephalus). Causes of hydrocephalus include genetic disorders, meningitis, head injuries and stroke as well as neural tube defects including spina bifida.

Babies born with hydrocephalus may have an unusually large head and a thin scalp with easily visible veins. They may also have symptoms such as poor feeding and drowsiness. Where hydrocephalus develops later in life symptoms include headaches, drowsiness, blurred or double vision, mental confusion and difficulty walking.

Hydrocephalus requires prompt surgical treatment to reduce the pressure on the brain from the additional fluid. If left untreated, the increase in pressure caused by the hydrocephalus will lead to brain damage.

Unfortunately there are some cases where opportunities to diagnose spina bifida or hydrocephalus are missed. If you or a family member have been affected by one of these conditions and are concerned that there has been a delay in diagnosis, please contact us for a free confidential discussion.