Spina Bifida: Care Staff Guide to Hydrocephalus, Bladder and Mobility

Spina bifida is a lifelong condition, and many people who have it now reach adulthood and live full lives. That means care staff increasingly support adults with spina bifida in supported living, care homes, day services and community settings, as well as children and young people. Needs vary widely: some people have no symptoms at all, while others need help with mobility, bladder and bowel care and the management of a shunt. This guide, based on NHS information, explains the condition and how to support people safely and respectfully.

What is spina bifida?

The NHS describes spina bifida as a condition in which a baby's spine and spinal cord do not fully develop in the womb. It is usually diagnosed during pregnancy or shortly after birth. The two main groups are:

• Open spina bifida, including myelomeningocele and meningocele, in which the spinal cord or its coverings push out through a gap in the spine. It is less common but usually more serious.
• Closed spina bifida, including spina bifida occulta and lipomyelomeningocele, in which a small gap in the spine is covered by skin so that the cord does not push out. Most people with closed spina bifida have no symptoms.

Symptoms

According to the NHS, open spina bifida can cause leg weakness or paralysis, problems with bladder and bowel control, loss of feeling in the legs and bottom, scoliosis (curvature of the spine) and hydrocephalus, a build-up of fluid on the brain. Closed spina bifida can cause pain or numbness in the legs or back, leg weakness and bladder and bowel problems, and may be noticed at birth through signs such as a fatty lump, a hairy patch or a deep dimple on the back. Some people have no symptoms and may not know they have the condition.

Causes and prevention

The exact cause is unknown. The NHS lists factors that can increase the chance of spina bifida, including low folic acid or vitamin B12 during pregnancy, a close family member with the condition and certain medicines taken in pregnancy, such as sodium valproate or carbamazepine. The NHS directs women who are pregnant or planning a pregnancy to its guidance on folic acid and other vitamins. Staff supporting women with epilepsy who may become pregnant should encourage them to speak to their GP or specialist before pregnancy, and should never advise stopping a prescribed medicine themselves.

Treatment and ongoing care

The NHS explains that open spina bifida is treated with surgery to close the spine and put the spinal cord back, usually within 48 hours of birth or, in some cases, before birth, usually before 26 weeks of pregnancy. Surgery cannot reverse existing nerve damage. Closed spina bifida usually needs no treatment, although surgery is sometimes required. Ongoing support often includes:

• physiotherapy and occupational therapy
• mobility aids such as wheelchairs, leg splints and braces
• orthopaedic surgery, for example for hip dislocation or club foot
• treatment for bladder and bowel incontinence
• self-care advice for joints, skin and feet

Hydrocephalus and shunts

Hydrocephalus is common in open spina bifida. The NHS explains that it is treated with a shunt, a thin tube that drains fluid from the brain, and that the shunt stays in for life and may need replacing if it becomes infected or fails. Hydrocephalus can also damage the brain and lead to learning difficulties. Staff need to know the signs of shunt problems, which can include new or worsening headache, vomiting, drowsiness, irritability, changes in behaviour or vision, or a return of earlier symptoms. If you suspect a shunt problem, treat it as urgent: seek immediate medical advice and call 999 if the person is very drowsy, confused or has a seizure. Our guide to normal pressure hydrocephalus explains how fluid build-up can affect thinking, walking and continence in later life.

Bladder and bowel care

Bladder and bowel control problems are common. Treatment is available, and plans may involve scheduled toileting, catheterisation, medicines, bowel routines or other approaches arranged by continence specialists. Support with continence is intimate care, so protect privacy and dignity, follow the person's plan, and use infection prevention measures. Report signs of urinary tract infection, such as fever, new incontinence, cloudy or smelly urine, pain or confusion, as people with reduced sensation may not feel pain. Skin care is also vital: reduced feeling in the legs and bottom raises the risk of pressure damage, so check skin regularly and report any redness or sores. Our guide to spinal cord injury care covers many related principles for people with reduced sensation and bladder or bowel dysfunction.

Mobility, falls and independence

Some people walk independently, some use braces or sticks and some use a wheelchair. Staff should follow the physiotherapy and occupational therapy plan, support safe transfers, check equipment, and encourage people to be as active as they can. Reduced sensation means injuries to feet and legs may go unnoticed, so check footwear and skin daily. Our guide to falls prevention and CQC Regulation 12 covers how services assess and reduce risk without restricting independence.

Learning, education and work

The NHS notes that most children with spina bifida attend mainstream school with some support, although some have learning disabilities and need a specialist school. Adults may have difficulties with memory, organisation or planning that are less visible than physical needs. Offer clear information, written prompts and time, and support people to take part in work, education and community life.

Outlook and wellbeing

The NHS says most people with open spina bifida reach adulthood and can live full lives, and many can have children. Wellbeing involves more than physical care: friendship, sexuality and relationships, employment and mental health all matter. Treat the person as an adult, ask what they want, and avoid assumptions.

Support organisations

The NHS signposts to Shine, a charity providing information and support for people with spina bifida and hydrocephalus, whose membership is free but required for some services, and to The Brain Charity. Information about people with spina bifida is shared with the National Congenital Anomaly and Rare Disease Registration Service for research, and people can opt out at any time.

Frequently asked questions

Is spina bifida always serious?

No. The NHS explains that closed forms often cause no symptoms, while open spina bifida is usually more serious.

Can people with spina bifida have children?

Yes. The NHS says many people with open spina bifida can have children.

What should I do if a shunt might not be working?

Treat it as urgent. Seek immediate medical advice, and call 999 if the person is very drowsy, confused, vomiting repeatedly or having a seizure.

Keep building your knowledge

Person-centred support for long-term neurological conditions starts with understanding. Explore the health and social care learning available through Learnsignal CPD to keep your knowledge current.

This article is general information for care staff, based on published NHS guidance, and does not replace the advice of a person's own clinicians.