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. See the boxes to the left for more details about your child’s care team and treatment plan.
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. See the Health A-Z topic about Scoliosis - treatment for more information about treating this condition.
Treating hydrocephalus
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
See Spina bifida - complications for more information about the problems that can affect the shunt and shunt repair surgery.
Physical therapy
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.
See the Health A-Z topic about Physiotherapy for more information about this type of treatment.
Occupational therapy
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.
See the Health A-Z topic about Occupational therapy for more information about this type of treatment.
Assistive technology
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.
See the Health A-Z topic about Paralysis for more information about living with and treating this condition.
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.
Read more about learning disabilities and the help and support that is available.
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. See the Health A-Z topic about UTI - children for more information about the condition.
Antimuscarinics
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
- drowsiness
Some types of antimuscarinics are not recommended for children, and some may be used in children who are over 12 years of age.
Botulinum toxin
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.
Mitrofanoff procedure
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. See the Health A-Z topic about Bowel incontinence - treatment for more information.
Diet
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:
- grapes
- sweetcorn, both fresh and tinned
- fatty foods
- chocolate
- 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.
Medication
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
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.
Enema
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. See the Health A-Z topic about Colostomy for more information about the procedure.
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. See the Health A-Z topic about Ileostomy for more information about the procedure.
