If your child is diagnosed with spina bifida, they'll be referred to a specialist team who will be involved in their care.
A care plan may be drawn up to address your child's needs 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 can push out of an opening in the spine and form a sac. This damages the nerves and can lead to serious infections, so your baby will usually have surgery to repair the spine within 48 hours of birth.
During surgery, the surgeon will put 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 sealed with muscle and skin.
Although this will repair the defect, unfortunately it can't reverse any nerve damage.
Surgery is usually needed if your child has hydrocephalus (excess fluid on the brain). The surgeon will implant a thin tube called a shunt to drain away excess fluid to another part of the body, usually the tummy.
In most cases, the shunt remains in place for the rest of the child's life. Further surgery may be needed if:
- the shunt becomes blocked or infected
- the child grows out of the shunt and needs a larger one
Read about treating hydrocephalus and complications of hydrocephalus.
Physiotherapy is an important way of helping someone with spina bifida to become as independent as possible. The main aim is to help with movement, prevent deformity, and stop the leg muscles weakening further.
This may involve daily exercises to help maintain strength in the leg muscles, as well as wearing special splints to support the legs.
Occupational therapy can help people find ways to carry out everyday activities and become more independent.
An occupational therapist can help work out practical solutions to problem areas such as getting dressed. They may for example provide equipment, such as handrails, to make the activity easier.
People who are unable to use their legs at all will usually require a wheelchair. Electric wheelchairs are available, but using a manual wheelchair can help to maintain good upper body strength.
Leg braces, splints and other walking aids can be used by people who have weak leg muscles.
Read more about treating paralysis and choosing mobility equipment, wheelchairs and scooters.
Treating bone and joint problems
Further corrective surgery may be needed 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 bladder problems
Many people with spina bifida have problems controlling their bladder.
Treatments for bladder problems include:
- antibiotics – lifelong antibiotics are sometimes needed to help prevent kidney and urinary infections
- medicines – that help relax the bladder so it can store more urine
- urinary catheterisation – an intermittent urinary catheter is usually needed to drain urine from the bladder several times a day to help prevent infection
- bladder surgery – may involve enlarging the bladder so it can hold more urine, or connecting the appendix to the bladder and making an opening in the belly so that a catheter can be used more easily
Read more about urinary incontinence.
Treating bowel problems
Bowel problems, particularly constipation, are often a problem for people with spina bifida.
Treatments for bowel problems include:
- laxatives – a type of medicine to help empty the bowels
- suppositories and enemas – medicines put into the bottom to help stimulate the bowels and relieve constipation
- anal irrigation – where using special equipment, you pump water through a tube into your bottom to clean out your bowels; this can be done at home once you've been trained in using the equipment
- antegrade continence enema (ACE) – an operation to create a channel between the bowel and a small opening (stoma) on the surface of the tummy; this means liquids can be passed through the opening in the tummy to flush stools out of the bottom
- colostomy – surgery to divert one end of the large bowel through an opening in the tummy; a pouch is placed over the opening to collect stools; a colostomy may be recommended if other treatments don't work
Read more about bowel incontinence.
Support at school
Most children with spina bifida have a normal level of intelligence and are often be able to attend a mainstream school.
However, they may need support to help with any learning disabilities they 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).
Read more about special educational needs (SEN).