Children with Spina Bifida

As noted in the birth to six section of this course, spina bifida is a neural tube defect. The neural tube, which later develops into the spinal cord, fails to close properly during the first few weeks of pregnancy. The result could be spina bifida. The severity of spina bifida will depend on where the damage to the spinal cord is. If the damage (also called a lesion) is higher up on the spinal cord, the damage will be serious. If it is lower on the spinal cord, the damage will be less severe. The damage could range from minor loss of control over movement to paralysis. Some children with spina bifida also experience loss of sensation in some of their limbs.

Children with spina bifida usually experience delays in the development of their gross motor skills. They often need casts or walkers, in order to move around independently. When they are older, they may start using a wheelchair (Fig. 1) because moving around makes them very tired, very quickly.

Figure 1. In a wheelchair

There are many types of spina bifida. To view these types, please visit the birth to six spina bifida section of this course.

Many children with spina bifida also have hydrocephalus. In hydrocephalus, cerebro-spinal fluid, which is the fluid found in the skull, fails to drain properly. As a result, the child’s head may appear very big . The presence of excessive cerebro-spinal fluid in the brain can cause nausea, dizziness, blurred vision, severe headaches, brain damage, and in rare and severe cases, death. Because of that, excessive cerebro spinal fluid needs to be drained from the brain. Many children with hydrocephalus will need a shunt. The shunt is a surgical device that is installed in the child’s brain, and that will drain the excessive fluid from the child’s brain.

Many children with spina bifida also have incontinence issues. Many of them do not have full control of their bladder and bowel movements. Because of that, many children with spina bifida carry colostomy bags with them. Colostomy bags provide an alternative for disposal of waste that is coming out of the body. For more information about solutions to incontinence issues, please visit the website of the Spina Bifida Association.

Many children with spina bifida have typical intelligence. Some may have learning and attention difficulties. Many will have gross motor difficulties and/or delays.

School-age children with spina bifida could benefit from the following services:

• Special education services: most children with spina bifida will need the help of a special educator. The special educator will collaborate with the regular education teacher and ensure that the child is fully integrated into the regular classroom. Some children with spina bifida will have aides and others will not. Whether or not a child will have an aide will depend on the severity of his or her symptoms. The special educator will help children with spina bifida with any learning and/or attention difficulties they may experience;
• Physiotherapy  (PT): most children with spina bifida will need the help of a physiotherapist. The PT will help the child improve his or her gross motor skills and use assistive devices (see full Glossary). Assistive devices include walkers and wheelchairs. The physiotherapist will also help the regular education teacher make the classroom as inclusive as possible (Fig. 2), for a child with walkers or in wheelchairs;

Figure 2. Inclusive classroom

• Nurse: nurses will sometimes serve on the child with spina bifida’s Individualized Education Plan team. They will help everyone working with the child to recognize the signs of shunt malfunction. For information about shunt malfunction, please visit the following website. They will also help with the child’s colostomy bag and incontinence difficulties;
• School counselor: some children with spina bifida experience anxiety and feel sad. They may have low self-esteem and little self-confidence. The school counselor can help children with spina bifida deal with feelings of sadness or anxiety;
• Psychotherapist: some children with spina bifida are so anxious that they end up with a diagnosis of an anxiety disorder. Others may qualify for a diagnosis of depression. When that happens, the child will need the help of a psychotherapist.

Most children with spina bifida perform quite well in the regular classroom. Most also grow up to be healthy and happy adults who are fully contributing members of society.

see References

Lutkenhoff, M. (2008). Children With Spina Bifida (2^nd Ed.). Bethesda, MD: Woodbine House.

http://www.bced.gov.bc.ca/specialed/awareness/63.htm