Spina bifida is the term used to describe a group of congenital conditions in which there is abnormal development of part of the spinal cord. The most common and serious form is myelomeningocele in which the abnormal spinal cord is exposed on the surface of the back when the baby is born. The incidence of spina bifida in South Australia is about 1 per 1000 births.
Paralysis of the legs
There may be complete paraplegia, or partial or minor paralysis depending on the level of the spinal injury. Children with complete paralysis use wheelchairs for getting around. Those with part paraplegia may walk with orthoses, splints or crutches. A few are able to walk by themselves without equipment. Orthopaedic surgery on feet and legs may assist some children.
There is loss of feeling in the legs that depends on the level of paralysis. This may lead to problems with pressure ulcers and burns, followed by infection.
About 80% – 90% of children with myelomeningocele have hydrocephalus, which is a build up of fluid in the brain. Most children will require a shunt operation to control the hydrocephalus. The shunt may need to be revised as the child grows or if it becomes blocked.
Bladder and bowel paralysis
Nearly all children with spina bifida have problems with bladder and bowel control. Bladder paralysis may lead to repeated urinary infections and kidney damage. Bladder paralysis is managed by regular catheterisation every few hours during the day. Parents are taught how to do this, and the child will learn to self-catheterise when they are about six to eight years old. Bowel incontinence is managed in various ways such as by careful attention to diet, medicines that soften the faeces, enemas or suppositories.
Bone and joint deformities and spinal curvature
These are common and may require splints or surgery.
Most children with spina bifida have learning difficulties. They often have problems with self-organisation, and poor motivation and may need special educational help.
Children with spina bifida and their parents face many challenges. However, with the support of a coordinated team including doctors, nurses, therapists and teachers, these can be met successfully. Physiotherapists have a large involvement in helping such children with how they move about, occupational therapists assist them to learn how to manage activities of daily living and psychologists are essential in helping the child to learn as well as they can.
If you would like information or free advice, speak to someone in our friendly team on 1300 NOVITA (1300 668 482) or visit our Contact Us page for more ways to get in touch.