Children living with spina bifida can have weakness in their legs, caused by the impact on their spine. Children may also have difficulty feeling and sensing pain, temperature, touch and position. 

Careful leg positioning and daily skin inspections are required to prevent pressure injuries, burns and other serious complications. See more about pressure relief techniques.

The damage to the motor and sensory nerves present at birth in Spina Bifida is permanent. Any further changes and deterioration in a person’s mobility or movement as they grow older should be reported to the doctor, as this may indicate a tethered spinal cord. A tethered cord occurs when the spinal cord is caught by fibrous scar tissue or fatty tissue that prevents it from moving freely in the spinal column. 

Symptoms and signs that may indicate a tethered cord include:

• Deterioration of walking ability.
• Lower back and or leg pain that is persistent and progressive.
• Onset of deformity in the feet not previously present.
• Changes in sensation in the legs.
• Changes in continence.

This requires urgent medical attention and should not be ignored.

Some children living with spina bifida will need a wheelchair. Others may find that using a wheelchair for activities that require them to mobilise over long distances, such as excursions or shopping, enables better involvement in these activities. Children who need wheelchairs will be introduced to them during their preschool years, allowing for greater independence and time to develop safe wheelchair skills.

There are many types of wheelchairs. Your child’s occupational therapist will help choose the most appropriate wheelchair and teach your child how to use it.

Wheelchair types include:

• manual wheelchairs
• folding wheelchairs for children who tire easily.
• fixed-frame manual wheelchairs

Fixed frame manual wheelchairs are lightweight and custom-made. They are usually provided to people who need a wheelchair for their main mobility. These wheelchairs are intended to increase independence, and the person should use them themselves by pushing around with their arms. See the Wheelchair propulsion technique on the Physical activity page for more information.

Some wheelchairs can be adapted so as a person grows, the chair will still fit. Children will normally be prescribed a wheelchair at about three to four years of age so that they can develop safe wheelchair skills by the time they start school. These may be required for all or part of the day.

People who use a wheelchair as their main mobility aid need to check their skin twice a day to protect from pressure injuries. See Pressure injuries factsheet. 

Walking aids support a child’s weight as they stand and walk. They also help with balance. A physiotherapist can assist in prescribing your child with the correct walking aid and how best to use them.

These are custom-made splints, moulded from special plastic and metal, to support your child’s legs for walking, maintain foot positioning in a wheelchair, and prevent muscles tightening across joints at night. 

They should be reviewed by an orthotist every six months and need to be cleaned regularly and inspected for any signs of wear-and-tear. If ill-fitting, they could contribute to a pressure injury.

Children living with spina bifida, and their parents/carers can benefit from using:

• Bath boards: a removable seat that fits the width of a bathtub. It provides a seated area that ensures a safe transfer to have a bath.
• Bath bench: is a wide seat with adjustable legs. They also assist with a safer transfer into the bath. Bath benches can also be used in the shower recess. and bath benches to make showering easier
• Shower chairs and shower stools: for people who have problems bending or standing for long periods, shower chairs can provide that extra bit of stability. It should have non-slip feet as opposed to a normal plastic chair that can slip in the shower.