Spina Bifida

Spina Bifida is a physical disability that involves an incomplete closure of the spine. “Spina” means spine and “bifida” means split.” According to the Spina Bifida Association, approximately eight babies are born with some form of spina bifida each day. The Spina Bifida Association reports the following four types of Spina Bifida.

Occult Spinal Dysraphism

Symptoms include a dimple on the spine, red marks, tufts of hair or small lumps. Children that are diagnosed with OSD need to be monitored throughout childhood to ensure that the spinal cord is growing properly.

Spina Bifida Occulta

There is an opening in one or more of the vertebrae. It is known as the “hidden spina bifida” because may people do not know that they have it. Approximately 15% of the population has spina bifida occulta.

Meningocele

The spinal cord pushes through the hole in the spinal in a sac, but there is usually little nerve damage.

Myelomeningocele

This is considered the most severe form of spina bifida. The spinal cord and nerves push through the spine. Nerve damage is caused which results in physical disabilities. A large percentage of babies born with this condition also have fluid build up in the brain because the fluid cannot drain properly. It is imperative that the child be treated medically to relieve the build up of fluid as brain damage may occur.

Children with meningocele and myelomeningocele require surgery. Children with OSD do may require surgery and should be monitored closely. Individuals with Spina Bifida Occulta do not require medical intervention.

The following characteristics are reported by NICHCY (2010) for the most serious type of spina bifida:

  • muscle weakness or paralysis below the area of the spine where the incomplete closure (or cleft) occurs
  • loss of sensation below the cleft
  • loss of bowel and bladder control
  • fluid may build up and cause an accumulation of fluid in the brain

Children with Spina Bifida require support in the following areas:

  • Mobility training- some children may use a wheelchair and others a walker
  • Training in learning to manage bowel and bladder functions
  • Direct care providers may be need training in catheterizing young children until they become independent in the process
  • Structural accommodations such as ramps and accessibility to classrooms and other areas within a building that other children have
    access to
  • Some children may also have learning disabilities and language disorders and require special education support

Strategies that may be helpful for team members working with children with Spina Bifida:

  • Collaborate with the team to find ways for the child to participate to the child’s
    fullest potential
  • Use direct eye contact and alternative communication devices as necessary for children with language delays
  • Provide the child with extra time and help to complete the task a necessary
  • Get to know the child and learn about interests and what the child experiences daily.
  • Adaptations to tasks may be required for the child to fully participate
  • Use technology devices as necessary such as the computer and other assistive technology support
  • Be respectful when providing physical care and remember confidentiality is important.

References:

http://nichcy.org/disability/specific/spinabifida

http://www.spinabifidaassociation.org/site/c.liKWL7PLLrF/b.2642297/k.5F7C/Spina_Bifida_Association.htm

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