Spina bifida (myelomeningocele) can cause several health complications. It can also have a significant psychological (mental) effect on those living with the condition or on those who are 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 that is used extensively in the medical profession. It is used to create products such as latex gloves, masks and other items of clothing, as well as some types of medical equipment.
It is thought that latex allergies occur because people with spina bifida often need to spend a lot of time in medical environments, such as hospitals. They are therefore exposed to more latex than most people. This over-exposure may trigger the development of a latex allergy.
The allergic reaction can range from mild to severe. Mild symptoms of an allergic reaction include watery eyes and skin rashes. A severe allergic reaction, known as anaphylactic shock, can be life threatening because the airways can narrow, causing serious breathing problems. Anaphylactic shock requires immediate treatment with an injection of adrenalin.
If you or your child develop a latex allergy, you will need to tell all of the medical professionals who are involved with your care or your child’s care. Alternatives to latex can be used.
Some people with latex allergies also develop an allergy to foods that contain certain proteins that are similar to those found in latex. These foods include:
- bananas
- avocados
- chestnuts
- mangoes
- kiwi fruits
- tomatoes
- potatoes
Shunt malfunction
If you or your child has had a shunt fitted to treat hydrocephalus (excess fluid on the brain), there is a risk that it could become blocked or infected. A shunt is a thin tube that is implanted in the brain. As your child grows, the shunt may become too small and need to be replaced.
It is estimated that 4 out of 10 shunts will need to be replaced within the first year of being fitted. Within 10 years, 8 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 be very serious because it 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 or your child experiences the symptoms that are listed below.
Symptoms of a shunt malfunction in infants include:
- their head growing larger
- the soft spot (fontanelle) on their head being full or tense
- irritability
- 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
- 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 become infected. 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
You may need antibiotics (medicines to treat bacterial infections) and in some cases you will also need surgery to replace the shunt.
Psychological effects on parents
Being told that your unborn baby has spina bifida can be a very 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 to 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 that you have. Raising a child with spina bifida can be challenging and at times stressful, but it can also be a rewarding and fulfilling experience.
Association for Spina Bifida and Hydrocephalus (ASBAH)
The Association for Spina Bifida and Hydrocephalus (ASBAH) is the UK’s largest spina bifida charity. ASBAH offers a wide range of resources for parents and can provide you with details about local support groups and organisations.
As well as visiting the website, you can also can contact ASBAH by phoning their helpline number, which is 0845 450 7755 (open Monday to Friday, 10am to 4pm).
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, the child starts to become more aware of how their condition makes them different from other children. This can cause some older children with spina bifida to become reserved and withdrawn, while others may 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.
Information and support is available on the ASBAH website, including lifestyle information and case studies about people living with spina bifida.
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 using medicines.
See the Health A-Z topic about Erectile dysfunction for more information about this condition and how it is treated.
