How is spina bifida treated?

The baby will be seen by a paediatric neurosurgeon shortly after birth. The surgeon will then decide whether the child should have surgery to repair the defect in the back: this surgery will take place in a specialist unit usually within 48 hours. Sometimes, in large lesions or premature babies, there may not be enough skin available to close the lesion right away, and the Plastics Team may be involved.

What are the effects of spina bifida?

These vary greatly. Even people with a lesion of similar size and position may experience different impairments. Generally, people with lesions at waist level (L1 or above) often use wheelchairs at all times, while most people with lesions at the bottom of the spine (sacral) will be able to walk as adults.

Many children with lesions in the mid lumbar area walk during childhood, but choose to use a wheelchair for longer distances, sports, or as they get older. Splints often help support the feet and ankles.

Loss of skin sensation can lead to sores on the feet, through injury or shoes that rub, and sometimes burns to the feet and legs. It’s important to protect the feet, by having correctly fitting shoes or splints, covering hot pipes and carefully checking the bathwater before getting in.

Bladder and bowels are very often affected, even in people with sacral lesions. Loss of sensation, and lack of coordination between the bladder muscle and the outlet (bladder neck) can lead to difficulty filling and emptying the bladder. Infections, leaking and frequency of passing urine can occur, but intermittent catheterisation, and medication to relax the bladder can be a big help. Bowel issues such as constipation or leakage can often be helped with irrigation and/or medication.

Because spina bifida changes the way the brain develops, there can be an impact on learning and behaviour.

Genetic Counselling

Prospective parents who have had a baby with a neural tube defect, or who have a close relative with a neural tube defect, should be referred to a genetic counsellor for advice.

Need more help?

If you need to speak with one of Shine’s specialist advisers about spina bifida or hydrocephalus, call us on 01733 555988 or click here to email us.

Our office hours are Monday to Friday, 9am to 5pm. We aim to respond to all enquiries as quickly as possible!

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