Spina bifida can cause several health complications. It can also have a significant psychological effect on those living with the condition and their carers.

Bladder and kidney problems

Many people with spina bifida have problems storing and passing urine. This can sometimes lead to:

• recurrent urinary tract infections (UTIs)
• hydronephrosis (where one or both kidneys become stretched and swollen as a result of a build-up of urine inside them)
• kidney scarring
• kidney stones

Signs of a urinary tract infection can include a high temperature (fever) and blood in your urine. You may also have an ache or pain in your back or side, and pain when urinating.

Because of this risk, you may need to have regular appointments to monitor bladder and kidneys. This may involve ultrasound scans, as well as tests to measure the volume or your bladder and the pressure inside it.

In some cases, you may need long-term antibiotic treatment to prevent UTIs.

Skin problems

If you have spina bifida, you may have reduced sensation in your legs because the nerves are unable to send clear signals to the brain.

This could mean that it's hard for you to tell when you have damaged the skin on your legs, either due to an injury, a burn, or prolonged pressure (for example, from sitting for a long period of time).

If you injure yourself without realising it, there is a risk your skin could become infected or develop into a long-lasting ulcer (open sore), so it's important to check your skin regularly for any signs of injury.

Latex allergy

Children and adults with spina bifida can develop an allergy to latex. Latex is a type of naturally occurring rubber used to create products such as latex gloves, masks and other items of clothing, as well as some types of medical equipment.

Symptoms can range from a mild allergic reaction – watery eyes and skin rashes – to a severe allergic reaction, known as anaphylactic shock. Anaphylactic shock can be life-threatening and requires immediate treatment with an injection of adrenalin.

You should tell medical professionals involved with your care if you or your child is allergic to latex, as alternative materials can be used.

Psychological effects on parents

Being told your unborn baby has spina bifida can be a traumatic experience. You may have feelings of grief, anger, shock, fear and guilt. Parents are also often concerned about what will happen in the months and years ahead and, in particular, what extra support and care their child will need.

If your child has spina bifida, discuss your concerns with your care team. Psychological support can be made available to help you cope with what is sure to be a difficult time.

Talking to other parents with experience of spina bifida is a good way to find out more about the practicalities of raising a child with the condition and can help you to cope with any fears or concerns you have.

Psychological effects on children and young people

Young children with spina bifida are often able to cope relatively well with the condition. Problems tend to develop as a child gets older and they begin to mix with other children.

During this period, children become more aware of how their condition makes them different from other children. Some children with spina bifida become reserved and withdrawn, while others begin to exhibit challenging behaviour due to a sense of anger or frustration.

Encouraging your child to participate in activities with other children can help to boost their confidence and self-esteem.

The teenage years

The teenage years can be a particularly difficult time both for young people with spina bifida and their parents.

Tensions can develop as many young people want more independence, which some parents can be reluctant to give. Trying to increase your child’s independence while protecting them from harm can sometimes be a difficult balancing act.  

Sex and sexuality

Sexuality can also be a sensitive area for young people with spina bifida. Like other teenagers, as they go through puberty they will develop sexual feelings and a sexual identity. However, a young person with spina bifida will be naturally concerned about how their condition may affect their ability to develop and maintain intimate relationships.

Teenagers are often reluctant to discuss these kinds of intimate issues with their parents, so they may benefit from talking to other qualified adults, such as a nurse or social worker.

There is no reason why young people with spina bifida cannot experience normal adult sexual relationships as they get older. However, some men and boys may experience erectile dysfunction as a result of nerve damage. This can usually be treated with medication.