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The Facts about Spina Bifida for patients and parents

Spina bifida, which literally means 'cleft spine', occurs when a child's spine and spinal cord do not properly develop in the womb, resulting in a gap in the spine. Specifically, part of the neural tube (a structure which starts to form in the early stages of pregnancy, develops into the brain and spinal cord and closes around one month after conception) does not develop or close correctly.

The Facts about Spina Bifida

It is not completely understood what causes spina bifida but several risk factors have been identified:

  • A lack of folic acid (vitamin B9) intake during pregnancy. This is one of the most important factors influencing the chances of a child being born with spina bifida; the NHS estimates that taking folic acid supplements (available over the counter or by GP prescription) before conception and during pregnancy could prevent as many as 7 out of 10 cases of neural tube defects. 
  • Family history of spina bifida. If you have a family member with spina bifida then your chances of having a baby with the condition is increased. 
  • Usage of certain medicines. The medicines valproate and carbamazepine (used in the treatment of epilepsy and some mental health conditions) has been linked to a heightened risk of having a baby with spina bifida. 
  • Obesity. Women with a body mass index exceeding 30 are more likely to conceive a child with spina bifida.
  • Diabetes. Women who have diabetes could have a higher risk of having a child with spina bifida.

All pregnant women are offered a mid-pregnancy anomaly scan between 18 and 21 weeks, at which spina bifida is often detected. After birth, several tests can be administered to find out the severity of the condition and help determine which forms of treatment will be best. Spinal repair surgery soon after birth is usually recommended.

People with spina bifida usually have weakness in the legs; sometimes the legs are totally paralysed. Many experience problems with continence and reduced or absent sensation in the legs. Some babies also develop hydrocephalus, which is a build-up of fluid on the brain. A fraction of people with spina bifida have learning difficulties.

In addition to surgery, there are many ways to improve the lives of people with spina bifida, from physiotherapy to occupational therapy. Mobility equipment can also help improve independence, as can the wearing of dynamic compression garments such as those from the Sensory Dynamic Orthosis (SDO®) from Jobskin®. Though spina bifida is a challenging condition to live with, most people with the condition can live independent, fulfilling lives with the right support and treatment.

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