Symptoms - Spina bifida

Spina bifida can cause a wide range of symptoms, including problems with movement, bladder and bowel problems, and problems associated with hydrocephalus (excess fluid on the brain).

The severity of the symptoms of spina bifida varies considerably, largely depending on the location of the gap in the spine.

A gap higher up the spine is more likely to cause paralysis of the legs and mobility difficulties compared with gaps in the middle or at the base of the spine, which may only cause continence issues.

A baby is more likely to have learning difficulties if they develop hydrocephalus.

Movement problems

The brain controls all the muscles in the body with the nerves that run through the spinal cord. Any damage to the nerves can cause problems controlling the muscles.

Most children with spina bifida have some degree of weakness or paralysis in their lower limbs. They may need to use ankle supports or crutches to help them move around. If they have severe paralysis, they'll need a wheelchair.

Paralysis can also cause other, associated problems. For example, as the muscles in the legs are not being used regularly, they can become very weak.

The muscles support the bones so muscle weakness can affect bone development. This can cause dislocated or deformed joints, bone fractures, misshapen bones and an abnormal curvature of the spine (scoliosis).

Bladder problems

Many people with spina bifida have problems storing and passing pee. This is caused by the nerves that control the bladder not forming properly. It can lead to problems such as:

• urinary incontinence
• urinary tract infections (UTIs)
• hydronephrosis – where one or both kidneys become stretched and swollen due to a build-up of pee inside them
• kidney scarring
• kidney stones

The bladder and kidneys will need to be regularly monitored because of the risk of infection. Ultrasound scans may be needed, as well as tests to measure the bladder's volume and the pressure inside it.

Bowel problems

The nerves that run through the spinal cord also control the bowel and the sphincter muscles that keep poo in the bowel.

Many people with spina bifida have limited or no control over their sphincter muscles and have bowel incontinence.

Bowel incontinence often leads to periods of constipation followed by episodes of diarrhoea or soiling.

Hydrocephalus

Some babies with spina bifida have hydrocephalus (excess fluid on the brain), which can damage the brain and cause further problems.

Many people with spina bifida and hydrocephalus will have normal intelligence, although some will have learning difficulties, such as:

• a short attention span
• difficulty solving problems
• difficulty reading
• difficulty understanding some spoken language – particularly fast conversations between a group of people
• difficulty organising activities or making detailed plans

They may also have problems with visual and physical co-ordination – for example, tasks such as tying shoelaces or fastening buttons.

In some babies the lower parts of the brain are pushed downwards towards the spinal cord. This is known as type 2 Arnold-Chiari malformation and is linked to hydrocephalus.

Hydrocephalus can cause additional symptoms soon after birth, such as irritability, seizures, drowsiness, being sick and poor feeding.

Read more about the symptoms of hydrocephalus.

Other problems

Other problems associated with spina bifida include: 

• skin problems – reduced sensation can make it difficult to tell when the skin on the legs has been damaged – for example, if the skin gets burnt on a radiator; if a person with spina bifida injures their legs without realising, the skin could become infected or an ulcer could develop; it's important to check the skin regularly for signs of injury
• latex allergy – people with spina bifida can develop an allergy to latex; symptoms can range from a mild allergic reaction – watery eyes and skin rashes – to a severe allergic reaction, known as anaphylactic shock, which requires an immediate injection of adrenalin; tell medical staff if you or your child is allergic to latex