Page last reviewed: 13/07/2011
Spina bifida is a term that is used to describe a series of birth defects that affect the development of the spine and central nervous system. The central nervous system is made up of the brain, nerves and spinal cord. The spinal cord runs from the brain to the rest of the body and consists of nerve cells and bundles of nerves that connect all parts of the body to the brain.
The neural tube
During the first month of life, an embryo (developing baby) grows a primitive tissue structure called the neural tube. As the embryo develops, the neural tube begins to change into a more complicated structure of bones, tissue and nerves that will eventually form the spine and nervous system.
However, in cases of spina bifida, something goes wrong with the development of the neural tube and the spinal column (the ridge of bone that surrounds and protects the nerves) does not fully close. Spina bifida is a Latin term that means split spine.
Types of spina bifida
There are different types of spina bifida, including:
- spina bifida occulta
- spina bifida meningocele
This article focuses on myelomeningocele and this is the type of spina bifida that will be referred to whenever the term spina bifida is used. See the box to the left for information about spina bifida occulta and spina bifida meningocele
Myelomeningocele is the most serious type of spina bifida. It is estimated that it affects one baby in every 1,000 that are born in Ireland.
In myelomeningocele, the spinal column remains open along several vertebrae (the disc-shaped bones that make up the spine). The membranes and spinal cord push out to create a sac in the baby's back. Sometimes the sac is covered with membranes called meninges, although it often remains open, leaving the nervous system vulnerable to infections that may be fatal.
In most cases of myelomeningocele, surgery can be carried out to close the defect. However, extensive damage to the nervous system will usually have already taken place. Damage can result in a range of symptoms including:
- partial or total paralysis of the lower limbs
- bowel incontinence and urinary incontinence
- loss of skin sensation
Most babies with myelomeningocele will also develop hydrocephalus, which is a condition where there is excess cerebrospinal fluid (CSF). CSF is the fluid that surrounds the brain.
The build-up of CSF is caused by problems with the development of the neural tube. Hydrocephalus needs to be treated with surgery because the extra pressure that the fluid places on the brain can cause brain damage.
Over recent years, advancements in the treatment of spina bifida have resulted in a more positive outlook for the condition.
For example, before the 1960s, most children with spina bifida would die during their first year of life. However, today it is likely that children will survive into adulthood. Spina bifida can be a challenging condition to live with, but many adults with the condition are able to lead independent and fulfilling lives.
- An unborn baby is known as an embryo from when the female egg is fertilised by the sperm until the eighth week of pregnancy.
- Spinal column
- The ridge-shaped sections of bone that make up the structure of the spine and protect the nerves.
- Spinal cord
- The spinal cord is a column of nervous tissue located in the spinal column. It sends messages between the brain and the rest of the body.
Spina bifida occulta
Spina bifida occulta is the least serious type of spina bifida. In this type of spina bifida, the opening in the spine is very small, with a gap in one or more vertebrae (disc-shaped bones of the spine). The opening in the spine is covered with skin, so the gap is not visible from the outside.
Spina bifida occulta does not usually cause any symptoms and most people are unaware that they have the condition. In such cases, no treatment is required. In other cases, some symptoms may be apparent, such as bladder and bowel problems, or scoliosis, which is an abnormal curvature of the spine.
Spina bifida meningocele
Spina bifida meningocele is the rarest type of spina bifida. In this type of spina bifida, the meninges, which are the protective membranes that surround the spinal cord, are pushed out between openings in the vertebrae. The membranes can usually be removed during surgery and no further treatment is required.
In spina bifida meningocele, the nervous system is undamaged. However, a person with meningocoele may develop other problems, including bladder and bowel problems.
Page last reviewed: 13/07/2011
The severity of the symptoms of spina bifida (myelomeningocele) usually depends on the following two factors:
- Where on the spine the opening occurs: an opening at the top of the spine is more likely to cause total paralysis (weakness) of the lower limbs and other mobility difficulties, compared with openings in the middle or at the base of the spine.
- Whether the baby also develops hydrocephalus (excess fluid on the brain): the baby is more likely to have learning disabilities if he or she develops hydrocephalus.
Types of symptoms
Spina bifida can cause a wide range of symptoms that can be grouped into three general categories:
- cognitive symptoms, such as difficulty reading or solving problems
- mobility symptoms, such as paralysis and muscle weakness
- bladder and bowel symptoms, such as bowel incontinence and urinary incontinence
The defects that occur in the neural tube also affect the development of the brain. The cortex (main part) of the brain may not fully develop in the structured, layered pattern it should, especially the frontal part. This leads to some cognitive problems. Abnormal brain development may also include Type 2 Arnold-Chiari malformations involving the cerebellum.
The cerebellum is the main area of the brain that is affected. It is the part of the brain that is thought to be responsible for important cognitive functions including:
- language processing
- physical co-ordination
Further brain damage can occur if hydrocephalus places excess pressure on the brain.
About 6 out of 10 children with spina bifida will have normal intelligence, although just over half of these will have some type of learning disability. A learning disability is a condition that affects how someone learns, understands and communicates.
Children with spina bifida may have some specific learning disabilities. These include:
- a short attention span
- difficulty solving problems
- difficulty reading
- difficulty understanding some spoken language, particularly complicated language or rapid conversations between a group of people
- difficulty organising activities or making detailed plans
- difficulty understanding abstract concepts, such as logic or cause and effect
- difficulty with visual and physical co-ordination, for example tasks such as tying shoelaces or fastening buttons
The brain controls all the muscles in the body with the nerves that run through the spinal cord. Any damage to the nerves can result in problems controlling the muscles.
Most children with spina bifida will experience some degree of paralysis in their lower limbs. If a child with spina bifida is partially paralysed, they may need to use a leg brace or a walking cane to help with their mobility. In cases of total paralysis, the child will require 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 severely weakened. As the muscles support the bones this weakness can affect bone development. This can result in:
- dislocated joints
- misshapen bones
- abnormal curvature of the spine (scoliosis)
Bowel and bladder symptoms
As well as controlling your limbs, the nerves that run through your spinal cord also control your bowel and bladder. Specifically, they help to control the muscles of the sphincters that are found both in the bladder and the bowel.
Sphincters are rings of muscle that act as gates. They contract (squeeze shut) to keep urine and stools (faeces) in, and relax to let urine and stools out. Most people with spina bifida have limited or no control over their sphincter muscles. As a result of this, they experience urinary and bowel incontinence.
Urinary incontinence can take the form of a constant slow dribble of urine from the bladder.
If a child has bowel incontinence, they may experience periods of constipation (inability to empty their bowels) because they are unable to use their sphincter muscles to push stools out of their bowel. This can then be followed by episodes of diarrhoea (loose, watery stools) or soiling due to stools overflowing from the bowel.
The primitive tissue structure in an embryo (developing baby) that grows into a more complicated structure of bones, tissue and nerves that will eventually form the spine and nervous system.
The spinal cord is a column of nervous tissue located in the spinal column. It sends messages between the brain and the rest of the body.
Page last reviewed: 13/07/2011
The causes of spina bifida (myelomeningocele) are unknown, although most experts agree that the condition is probably caused by a combination of environmental, nutritional and genetic (inherited) factors. Several risk factors for spina bifida have been identified. These are described below.
Not having enough folic acid during pregnancy is the most significant risk factor for spina bifida. Folic acid is a vitamin that occurs naturally in some foods, such as broccoli, peas and brown rice. It is also added to other foods, such as some breakfast cereals. Folic acid tablets are available from pharmacies, supermarkets and health stores.
It is estimated that taking enough folic acid before you conceive and while you are pregnant can prevent up to 7 out of 10 cases of neural tube defects, such as spina bifida.
Exactly how folic acid helps prevent spina bifida is still uncertain. It may affect how the cells and tissue form in the embryo (developing baby).
If you have previously had a child with spina bifida, your risk of having other children with the condition is slightly increased. There is about a 1 in 20 chance that any other children that you have will also have the condition.
Some types of medicine have been linked to an increased risk of spina bifida or other birth defects, including:
These medicines are used to treat epilepsy and some mood disorders, such as bipolar disorder, which causes a person's moods to swing from one extreme to another.
Valproate causes neural tube defects, such as spina bifida, in one or two out of 100 cases. Exact figures for carbamazepine and lamotrigine are unknown but, due to the increased risk, it is recommended that sexually active women who are taking these medicines always use contraception.
If you are taking a medicine that increases the risk of spina bifida and you are planning a pregnancy, speak to your treatment team. Alternative medications may be available or it may be possible to change your dose. Taking extra folic acid supplements may also help to minimise the risk.
You should never stop taking a prescribed medication unless you are advised to do so by your GP or another qualified healthcare professional who is responsible for your care.
Women with diabetes, a condition caused by too much glucose (sugar) in the blood, have an increased risk of giving birth to a child with spina bifida. This may be due to the excess glucose in the blood interfering with the child's development.
Women who are obese are at increased risk of giving birth to a child with spina bifida. Obese means that you have a body mass index (BMI) of 30 or more.
The more obese you are, the higher the risk. Severely obese women with a BMI of over 40 are thought to be three times more likely to give birth to a child with spina bifida than women who are a healthy weight.
- Neural tube
- The primitive tissue structure in an embryo (developing baby) that grows into a more complicated structure of bones, tissue and nerves that will eventually form the spine and nervous system.
Page last reviewed: 13/07/2011
Most cases of spina bifida (myelomeningocele) are detected during routine ultrasound scans that are carried out during your antenatal appointments.
Spina bifida may be diagnosed during the ultrasound scan that is carried out around week 12 of the pregnancy or, more likely, during the anomaly scan that is carried out around weeks 18 to 20.
An ultrasound scan is an entirely safe procedure that uses sound waves to create an image of the inside of your body.
Most hospitals will offer women at least two ultrasound scans during their pregnancy. The first is usually at around 8 to 14 weeks and is sometimes called the dating scan because it can help to determine when the baby is due.
This first scan may be able to detect problems with your baby's spine that could indicate spina bifida if the condition is severe.
The anomaly scan is an ultrasound scan that is carried out around weeks 18 to 20 of your pregnancy. This scan aims to identify any physical problems with your baby. It is usually during this scan that spina bifida is diagnosed.
Coping with the results
If tests confirm that your baby has spina bifida, the implications will be fully discussed with you. You will need to consider your options carefully.
Page last reviewed: 13/07/2011
If your child is diagnosed with spina bifida (myelomeningocele) they will be assigned a team of healthcare professionals who will be involved with their care. Your child will also have a care plan drawn up for them that takes their individual needs into account.
There are several different treatments for the various symptoms that spina bifida can cause.
Surgery to repair the spine
If your child has spina bifida, surgery to repair their spine will usually take place within 48 hours of their birth.
During surgery, the surgeon will place the spinal cord, which is the bundle of nerves that connects the brain to the rest of the body, and any exposed tissues or nerves, back into your baby's body. They will then close any gap in the vertebrae (the disc-shaped bones that make up the spine) and seal the spinal cord with muscle and skin.
Further orthopaedic surgery
Further corrective surgery may be required if your child develops problems with the development of their bones, such as scoliosis (abnormal curvature of the spine) or dislocated joints. This type of surgery is known as orthopaedic surgery.
A back brace is often used to treat the symptoms of scoliosis.
If your child has hydrocephalus, where cerebrospinal fluid (CSF) builds up on the brain, they will also need surgery to treat this. The surgeon will implant a thin tube called a shunt into your baby's brain. The shunt will drain away any excess fluid to another part of the body, usually the abdomen (tummy).
In most cases, your child will need to have the shunt for the rest of their life. They may need to have further surgery if:
- the shunt becomes blocked or infected
- they grow out of the shunt and they need to have a larger one implanted
Physical therapy is one of the most important ways of helping your child to manage their condition and to make them as independent as possible. For spina bifida, the main aim of physical therapy is to prevent the child's leg muscles from weakening.
The physiotherapist will teach your child a number of physical exercises that they can carry out every day to help strengthen their leg muscles. Special leg braces may also be used to help strengthen your child's leg muscles.
Occupational therapy aims to improve your child's health and wellbeing by enabling them to carry out everyday activities.
An occupational therapist is able to identify problem areas in everyday life, such as getting dressed, and will help work out practical solutions. They may improve your child's ability to carry out a particular activity, for example, by encouraging them to practise certain movements. Alternatively, they may provide equipment, such as handrails, to make the activity easier.
Occupational therapy can be very useful for boosting your child's self-esteem (the way they feel about themselves) and for improving their independence.
There are several different technologies that can help children with spina bifida to gain more independence and control over their symptoms.
Children with total paralysis of the lower limbs will require a wheelchair. Electric wheelchairs are available, but using a manual wheelchair can help a child with spina bifida to maintain good upper body strength. Leg braces and other walking aids can be used by children who have partial paralysis.
Computers are a good tool for helping your child to overcome any learning disabilities that they may have. Software is available that can help children to organise their activities and plan their school work.
Word processing software with predictive text and spellchecking facilities can often benefit children who have problems with writing. There are also many educational programmes that make use of text and sound to help improve a child's reading ability.
Treating urinary incontinence
Treating your child's symptoms of urinary incontinence is an important way of boosting their self-esteem and helping them to develop more independence.
It is likely that you and your child will be referred to a urologist so that their bladder function can be assessed. A urologist specialises in treating conditions that affect the urinary system.
Some of the most widely used treatments for urinary incontinence in cases of spina bifida are outlined below.
Clean intermittent catheterisation
Clean intermittent catheterisation (CIC) is a technique that is used to empty the bladder at regular intervals. A catheter is a small, flexible lubricated tube. A continence adviser will teach both you and your child (when they are old enough) to place the catheter through your child's urethra and into their bladder. The urethra is the tube that carries urine.
Your child's urine will flow out of their bladder, through the catheter and into the toilet. Using a catheter can feel a bit painful or uncomfortable at first, but any discomfort should subside over time.
Starting to use CIC for your child soon after they are born will help you to learn how to insert the catheter and will get your child used to living with CIC from an early stage.
How often CIC will need to be performed will depend on your child's individual circumstances. For example, some children will only need to perform CIC once a day, while others will need to use the technique up to six times a day.
Regular use of a catheter increases the risk of your child developing a urinary tract infection (UTI). The symptoms of a UTI include:
- passing foul-smelling, cloudy urine
- general symptoms of an infection, such as a high temperature and being sick
You should contact your GP as soon as possible if you think that your child may have a UTI.
Antimuscarinics are medicines that are used to treat urinary incontinence in adults. They can increase the amount of urine that the bladder can hold so that you do not need to go to the toilet so often.
There has not been much research conducted into the use of antimuscarinics in children with urinary incontinence due to nerve damage, such as spina bifida. However, guidelines from the European Association of Urology suggest that they may be useful when combined with CIC.
Antimuscarinics can cause a number of side effects, including:
- a dry mouth
- constipation (an inability to empty your bowels)
- blurred vision
Some types of antimuscarinics are not recommended for children, and some may be used in children who are over 12 years of age.
Some children with spina bifida have a bladder condition that is known as hyper-reflexic bladder. Due to problems with the nervous system, the muscles of the bladder contract (squeeze together) abnormally. The contractions can prevent the bladder from filling properly and place the urine within the bladder at an increased pressure.
The increased pressure can cause incontinence and may also push urine back into the kidneys, which can trigger a UTI.
Botulinum toxin is a powerful poison that is safe to use in very small doses. An injection of botulinum toxin can be used to paralyse the muscles of the bladder. The effects of the treatment last for around six months, after which time a further injection is needed. It is not clear how many times this treatment can be repeated in children, although it has been repeated safely in adults.
Artificial urinary sphincter (AUS)
An artificial urinary sphincter (AUS) is a device that is surgically implanted to help treat urinary incontinence. The AUS has a silicone cuff that is surrounded by fluid, a pump and a balloon.
The cuff is attached to the urethra and the balloon is hidden inside the abdomen. In males, the pump is placed under the skin of the scrotum (the sac containing the testicles). In females, it is placed under the skin of the labia (the lips that surround the entrance to the vagina).
The fluid around the cuff squeezes the urethra shut, keeping the urine in the bladder. When it is time to go to the toilet, your child will press the pump. The pump temporarily empties the fluid from the cuff into the balloon. This releases the pressure on the cuff and opens the urethra, allowing the urine to be released into the toilet. After a few minutes the fluid will return to the cuff, closing the urethra.
AUSs are not recommended for use by boys who have not reached puberty. Puberty is the time in life when your body develops sexually and your reproductive organs become functional. During puberty, a boy's body goes through physical changes that mean that the AUS would need to be removed and reinserted.
The Mitrofanoff procedure is a surgical technique that uses the appendix. The appendix is a small pouch that is connected to the large intestine in the lower right hand side of the abdomen.
During surgery, the appendix is removed and one end is connected to the bladder and the other to the wall of the abdomen. This creates a channel that is known as a Mitrofanoff channel. If your child's appendix has been removed, alternative methods can be used to create a Mitrofanoff channel.
After the Mitrofanoff channel has been created, a small opening is made in or below your child's belly button. This opening is called a stoma. After the procedure is complete, your child will be able to place a catheter into the stoma to empty their bladder.
Treating bowel incontinence
Children with urinary incontinence often have bowel incontinence as well. Some cases of bowel incontinence can be treated using a combination of dietary changes and toilet training techniques.
Ensuring that your child eats a healthy, balanced diet that contains plenty of high-fibre foods should help to soften their stools and prevent constipation. This will make emptying their bowel easier. Foods that are high in fibre include:
- fruit and vegetables
- brown rice
- wholemeal pasta
- wholegrain bread
- seeds and oats
- beans, peas and lentils
Some foods can make stools too soft, which could lead to episodes of diarrhoea and soiling. These foods include:
- sweetcorn, both fresh and tinned
- fatty foods
- caffeine, which is found in cola as well as in tea and coffee
Keeping a food diary may help you discover what causes your child to get diarrhoea or constipation. You will then be able to find alternative foods that are more suitable for your child.
You should encourage your child to adopt a regular bowel-emptying routine, at least once a day. After breakfast is usually a good time for emptying the bowel because this is the time when natural bowel movements are most active.
If your child has difficulty passing stools, their continence adviser may be able to teach them techniques that they can use to encourage bowel movements.
Further treatment may be required if these techniques do not prevent episodes of constipation, diarrhoea or soiling.
There are several different medicines that can be used to treat the symptoms of constipation and diarrhoea. These include laxatives, which can help to soften stools, and loperamide, which can be used to treat diarrhoea.
However, you should never give your child an over-the-counter (OTC) diarrhoea medicine because many are not suitable for children. Always consult your GP if you require help with treating your child's diarrhoea.
Anal plugs are a good way of preventing episodes of soiling. An anal plug is made of foam and is designed to be inserted into your child's anus (the opening where solid waste leaves the body). This can feel a little strange at first, but most children quickly get used to it.
If the plug comes into contact with any moisture from the bowel, it expands into a mushroom shape, preventing any leakage or soiling. An anal plug can be worn for up to 12 hours, after which time it is removed using an attached string.
Enemas can be used to help children who have problems emptying their bowel, and who have not responded to other forms of treatment. Enemas can be used to clean out the bowel for two to three days.
A tube is inserted into the anus and a special solution is used to clean out the bowel. The contents of the bowel are collected in a bag, before being disposed of. Your continence adviser may be able to teach both you and your child how to perform an enema at home.
Surgery for bowel incontinence
Surgery for bowel incontinence may be required if your child does not respond to any of the above forms of treatment. Some commonly used surgical treatments are outlined below.
Antegrade continence enema (ACE)
Antegrade continence enema (ACE) is a surgical procedure that is designed to make enemas easier and more convenient.
The surgeon uses the appendix to create a channel between the bowel and the abdomen. A stoma is then made in the surface of the abdomen. A catheter can be inserted into the stoma so that liquids can be passed into the bowel to wash out its contents through the anus.
Colostomy and ileostomy
During a colostomy, the surgeon will divert a section of the colon so that it connects to a stoma in the abdomen. A pouch is connected to the stoma, which is used to collect the stools that would usually pass through the colon.
An ileostomy is a similar procedure to a colostomy, but in an ileostomy it is the end of the small intestine that is diverted to a stoma, rather than the colon. S
- The abdomen is the part of the body between the chest and the hips.
- A small, flexible lubricated tube.
- Cerebrospinal fluid (CSF)
- CSF is the fluid that surrounds your brain and spinal cord. It helps to support and protect the brain and spinal cord from trauma.
- Spinal cord
- The spinal cord is a column of nervous tissue located in the spinal column. It sends messages between the brain and the rest of the body.
- An opening in the abdomen, created to get rid of faecal or urinal waste.
Your child’s care team
The care team who will be responsible for your child’s care may include:
- a paediatrician - a specialist in treating children
- a neurologist - a specialist in treating conditions that affect the nervous system, which is made up of the brain, nerves and spinal cord
- a urologist - a specialist in treating conditions that affect the urinary system
- a public health nurse - a qualified nurse with extra training who helps families with babies and young children to avoid illness and stay healthy
- a social worker - someone who is involved in social service provision, who can provide advice about a variety of practical issues, such as benefits, housing and day care
- a physiotherapist - a therapist who can help to improve your child’s range of movement and co-ordination
- an occupational therapist - a therapist who can help to improve the skills and abilities that are needed for carrying out everyday activities, such as washing and dressing
- a continence adviser - a nurse who specialises in bladder and bowel problems
- an educational psychologist - a psychologist who assists children and young people who are having trouble progressing with their education, for example, due to a learning disability
Your child’s care plan
A care plan will be drawn up that addresses the needs of your child and any problems that they have. As your child gets older, the care plan will be periodically reassessed to take into account changes to their needs and situation.
You and your child will also be assigned a keyworker who will be the first point of contact between you and the various support services that are available. While your child is young it is likely that the keyworker will be a health visitor. However, as your child gets older and their needs become more complex, it is likely that the keyworker will be a social worker.
Page last reviewed: 13/07/2011
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.
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:
- kiwi fruits
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.
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
- poor feeding or being sick
- crossed eyes
- not being able to look up
Symptoms of a shunt malfunction in older children and adults include:
- increased irritability, lethargy or drowsiness
- changes in personality
- 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.
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)
- 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.
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.
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
Page last reviewed: 13/07/2011
The most effective way to prevent spina bifida (myelomeningocele) is to take folic acid supplements both before and during pregnancy.
The Department of Health recommends that all women who are trying to get pregnant should take a daily supplement of 0.4mg of folic acid. You should also take this supplement for the first 12 weeks of pregnancy because this is when your baby's spine is developing.
Women who are thought to be at higher risk of giving birth to a child with spina bifida may need to take a higher dose of folic acid. This includes women who:
- have diabetes, which is a condition caused by too much glucose (sugar) in the blood
- are taking medicines, such as carbamazepine, which are used to treat epilepsy, a condition that causes repeated seizures (fits)
Your GP will be able to advise you about this.
Folic acid tablets are available on prescription or from pharmacies, large supermarkets and health food stores. Natural sources of folic acid include:
- brussels sprouts
- brown rice
- some bread
- some breakfast cereals
If you are taking medication for a condition such as epilepsy, it is important that you check with your GP before taking folic acid. This is because some types of medication can cancel out the effects of folic acid supplements.