Treating spina bifida
If your child is diagnosed with spina bifida, you will be referred to specialist healthcare professionals who will be involved in their care.
A care plan may be recommended to address the needs of your child and any problems they have. As your child gets older, the care plan will be reassessed to take into account changes to their needs and situation.
There are several different treatments for the various problems spina bifida can cause. These are described below.
Initial surgery to repair the spine
In babies with spina bifida, nerves and membranes are able to push out of an opening in the spine and form a sac. This damages the nerves and can lead to serious infections, so surgery to repair the spine will usually take place within 48 hours of birth.
During surgery, the surgeon will place the spinal cord and any exposed tissues or nerves back into the correct place. The gap in the spine is then closed and the hole is sealed with muscle and skin.
If your child has hydrocephalus (excess fluid on the brain), they will usually need surgery. The surgeon will implant a thin tube called a shunt to drain away excess fluid to another part of the body, usually the abdomen (tummy).
In most cases, the shunt will remain in place for the rest of your child's life. Further surgery may be needed if:
- the shunt becomes blocked or infected
- they grow out of the shunt and need a larger one implanted
Read about treating hydrocephalus and the complications of hydrocephalus for more information about what this operation involves and what the risks are.
Physiotherapy is one of the most important ways of helping someone with spina bifida be as independent as possible.
The main aim of physiotherapy is to promote movement and prevent the leg muscles from weakening.
This may involve daily exercises to help maintain strength in the leg muscles, along with wearing special splints to support the legs.
The aim of occupational therapy is to help find ways to carry out everyday activities.
An occupational therapist can identify problem areas in everyday life, such as getting dressed, and will help work out practical solutions. This can be by encouraging certain movements or providing equipment, such as handrails, to make the activity easier.
Occupational therapy can help boost self-esteem and allow a person with spina bifida to become more independent.
Assistive devices and mobility aids
Assistive devices can help people with spina bifida gain more independence and overcome their movement difficulties.
People who are unable to use their legs will usually require a wheelchair. Electric wheelchairs are available, but using a manual wheelchair can help to maintain good upper body strength.
Leg braces and other walking aids can be used by people who have weakness in their leg muscles.
Read more about treating paralysis.
Treating bone and joint problems
Further corrective surgery may be required if there are problems with bone development, such as hip dislocation or club foot (a deformity of the foot and ankle). This type of surgery is known as orthopaedic surgery.
Treating urinary incontinence
Many children and adults with spina bifida experience urinary incontinence, but there are a number of treatments that can be tried to help improve the problem.
Some of the most widely used treatments are outlined below.
Clean intermittent catheterisation
Clean intermittent catheterisation (CIC) is a technique used to empty the bladder at regular intervals.
A catheter is a small, flexible lubricated tube that is inserted up the urethra (the tube that carries urine out of the body) and allows urine to flow out of the bladder and into the toilet.
How often CIC will need to be performed can vary. Some people will only need to do it once a day, while others will need to use the technique up to six times a day.
Read more about urinary catheterisation.
Antimuscarinics are medicines that can help to relax the bladder muscles. They can increase the amount of urine the bladder can hold, so you do not need to go to the toilet so often.
Antimuscarinics can cause a number of side effects, including a dry mouth, constipation, blurred vision and fatigue.
Surgery and procedures
A number of procedures can also be carried out to help control urinary incontinence, including:
- botulinum toxin – an injection of botulinum toxin can be used to paralyse the muscles of the bladder. The effects of the treatment last a few months, after which time a further injection is needed.
- artificial urinary sphincter (AUS) – an AUS has an inflatable cuff surrounded by fluid, a pump and a balloon. The fluid around the cuff squeezes the urethra shut, keeping the urine in the bladder.
- Mitrofanoff procedure – a surgical technique where the appendix (a small pouch in the abdomen) is removed and a channel created to an opening in or below your child's belly button (a stoma). A catheter can be placed in the stoma to empty the bladder more easily.
- augmentation cystoplasty – a procedure to make your bladder bigger by adding a piece of tissue from your intestine into the bladder wall.
Read more about surgical treatments for urinary incontinence.
Treating bowel incontinence
Children and adults 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.
Read more about treating bowel incontinence, including information on dietary changes, medication and surgical treatments for bowel incontinence.
Some commonly used treatments are outlined below.
A catheter with a balloon is inserted into the rectum. The balloon is pumped up to make a seal, and water is pumped in to wash out the lower bowel. When the balloon is deflated, the catheter, water and contents of the bowel are emptied into the toilet.
Antegrade continence enema (ACE)
Antegrade continence enema (ACE) is a surgical procedure designed to make enemas easier and more convenient.
The surgeon uses the appendix to create a channel between the bowel and the tummy. An opening (stoma) is then made in the surface of the tummy. 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
These treatments are rarely used for children, but may help some adults.
During a colostomy, the surgeon will divert a section of the colon so it connects to create a stoma in the tummy. A pouch is connected to the stoma, to collect stools.
An ileostomy is a similar procedure to a colostomy, but the end of the small intestine, rather than the colon, is diverted to create a stoma.
Support at school
Most children with spina bifida will have a normal level of intelligence and they will often be able to attend a mainstream school.
However, they may need some support to help them with any learning disabilities they may have, as well as any physical problems, such as incontinence.
If you think your child may need extra support at school or nursery, talk to their teacher or the special educational needs co-ordinator (SENCO).
The SENCO can spend some time with your child to work out what kind of extra support they might need. For example, this may be a different way of teaching, or having another adult in the classroom. Your child may be referred for an Education, Health and Care Needs Assessment.
Read more about learning disabilities and special educational needs (SEN).
Page last reviewed: 26/02/2015
Next review due: 26/02/2017