Spina bifida - Complications of spina bifida

Spina bifida (myelomeningocele) can cause several health complications. It can also have a significant psychological (mental) effect either on those living with the condition or caring for someone with spina bifida.

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 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.

Shunt malfunction

If you or your child has had a shunt fitted to treat hydrocephalus, there is a risk of it becoming blocked or infected. A shunt is a thin tube implanted in the brain. As your child grows, the shunt may become too small and need to be replaced.

It is estimated that four out of 10 shunts will need to be replaced within the first year of being fitted. Within 10 years, eight out of 10 shunts will need replacing. As most people with spina bifida need to have a shunt for the rest of their life, more than one replacement may be required.

Shunt blockage

A shunt blockage can lead to an excess build-up of fluid on the brain, which can cause brain damage. You should immediately contact your care team if you notice the following symptoms in your child:

• their head growing larger
• the soft spot (fontanelle) on their head being full or tense 
• poor feeding or being sick
• crossed eyes 
• not being able to look up

Symptoms of a shunt malfunction in older children and adults include:

• headache, nausea and vomiting
• increased irritability, lethargy or drowsiness
• changes in personality
• confusion
• visual problems, such as double vision or blurred vision
• seizures (fits)
• back pain
• difficulty walking
• a sudden change in continence patterns, for example, urinary incontinence in a person with no previous history of the condition

Surgery will be required to replace the malfunctioning shunt.

Shunt infection

It is also possible for the shunt to be infected. The infection begins during surgery, but symptoms usually show around two months later.

The symptoms of shunt infection vary depending on the type of shunt you have, but may include:

• a high temperature (fever)
• headache
• vomiting
• neck stiffness
• pain in your tummy (if the shunt drains into your tummy)
• irritability or drowsiness in babies

The shunt will need to be replaced.

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 also 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. It can also help you to cope with any fears or concerns you have. Raising a child with spina bifida can be challenging and at times stressful, but also a rewarding and fulfilling experience.

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 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 with spina bifida may experience erectile dysfunction as a result of nerve damage. This can usually be treated with medication.

Read more about erectile dysfunction for information about this condition and how it is treated.