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.
A care plan will be drawn up that addresses 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.
You should also be assigned a keyworker who will be your first point of contact. This is likely to be a health visitor or a social worker as your child gets older.
There are several different treatments for the symptoms that spina bifida can cause. These are described below.
Surgery to repair the spine
Surgery to repair their spine usually takes place within 48 hours of birth.
During surgery, the surgeon will place the spinal cord and any exposed tissues or nerves back into your baby’s body. Any gap in the vertebrae (the bones that make up the spine) is closed and the spinal cord is sealed with muscle and skin.
Further orthopaedic surgery
Further corrective surgery may be required if there are problems with bone development, 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 also used to treat the symptoms of scoliosis. Read more about how scoliosis is treated.
If your child has hydrocephalus (a build up of cerebrospinal fluid (CSF) on the brain), it will need to be treated with 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 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 complications of spina bifida for more information about problems that can affect the shunt and shunt repair surgery.
Physiotherapy is one of the most important ways of helping your child manage their condition so they're as independent as possible. For spina bifida, the main aim of physiotherapy is to promote movement and independent mobility to prevent the leg muscles from weakening.
Daily physical exercises can help maintain strength in the leg muscles along with wearing special leg splints.
Read more about physiotherapy.
The aim of occupational therapy is to allow your child to develop skills in 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 boost your child's self-esteem and improve their independence.
Read more about occupational therapy.
Assistive technology can help children with spina bifida gain more independence and control over their symptoms.
Children with muscle weakness of the lower limbs will require a wheelchair. Electric wheelchairs are available, but using a manual wheelchair can help maintain good upper body strength. Leg braces and other walking aids can be used by children who have weakness to the muscles of the lower legs.
Read more about paralysis for information about living with and treating this condition.
Computers are a good tool for children with learning disabilities. Software is available to help children organise their activities and plan their school work. There are also many educational programmes that use text and sound to help improve a child’s reading ability.
Read more about learning disabilities and the help and support available.
Treating urinary incontinence
Treating urinary incontinence is another important way of boosting your child's self-esteem and helping them develop more independence.
It is important your child's bladder function is assessed by a urologist (a specialist in treating conditions affecting the urinary system) in the early weeks following birth.
Some of the most widely used treatments for urinary problems in cases of spina bifida 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.
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.
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.
Read more information about urinary catheterisation.
Antimuscarinics are medicines used to treat tight bladder muscles. They can increase the amount of urine that 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 (an inability to empty your bowels)
- blurred vision
- botulinum toxin - 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.
- artificial urinary sphincter (AUS) - an AUS has a silicone 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.
Read more detailed information about these treatments and other surgical treatments for urinary incontinence.
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.
Read more about about how bowel incontinence is treated 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 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
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 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.
Read more information about a colostomy.
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.
Read more information about an ileostomy.