Spina Bifida

What is Spina Bifida ?

The term Spina Bifida is derived from the Latin words 'spina' meaning spine and 'bifida' meaning split or divided. The spine is made up of separate bones called vertebrae, which normally cover and protect the spinal cord. In Spina Bifida, some of these vertebrae are not completely formed but are split or divided and the defective spinal cord and its coverings usually protrude through the opening. There are different categories of Spina Bifida including:

Occulta
The outer part of the vertebrae is not completely joined. The spinal cord and covering (meninges) are undamaged. There are often tufts of hair found at the site of the lesion.

Meningocele
The outer part of the vertebrae is split but the spinal cord is normal. Only the meninges is damaged and pushed out through the opening.

Myelomeningocele
The outer part of the vertebrae is split with the spinal cord and meninges damaged and protruding from the opening.


How does it occur?

The cause of Spina Bifida is unknown, although genetic and environmental factors have been implicated as possible causes. The malformation of the spine occurs within the first few weeks of pregnancy and in Australia the incidence of Spina Bifida is one in 1,000. It is one of the most complex of the congenital disabilities.

What are the effects?

Effects of Spina Bifida can include:

1. Paralysis and loss of sensation
In the case of Myelomeningocele the spinal cord protrudes from the spine throughout pregnancy and is closed by surgery shortly after birth. As a result the spinal cord is almost invariably damaged and defective, the nerves being disorganised and broken. As a result messages from the brain (controlling and initiating movement) and those from the body to the brain (giving the sensations of touch, pain and position) are impaired. However, paralysis, muscle weakness and loss of sensation occur only at the level of the lesion and downward. Due to lack of skin sensation and decreased mobility, skin tissue breakdown may occur resulting in pressure sores. In most cases the head, upper trunk and arms are not affected. The level of impairment varies considerably depending on the amount of damage and the location of the lesion.

2. Lack of bladder and bowel control (Incontinence)
The nerves that control the bladder and bowel are located in the lowest region of the spinal cord. Consequently incontinence is a major problem particularly in the case of Myelomeningocele. Lack of bladder control presents two immediate dangers - infection and back pressure on the kidneys which, without proper management, can lead to renal problems. For more information, visit our Incontinence page

3. Hydrocephalus
Hydrocephalus literally means 'water on the brain' and is a potentially dangerous condition involving the excessive accumulation of spinal fluid within the brain caused either by over production of the fluid or more usually by an obstruction to its normal circulation. While it is a complication of Spina Bifida occurring in approximately 90 % of cases, Hydrocephalus is by no means exclusive to Spina Bifida. For more information, visit our Hydrocephalus page

Latest research

Potentially, any woman could have a baby with Spina Bifida. If there has never been a baby with Spina Bifida in the family before, the incidence is around 1 in 1000. If there is a close family history, on either the mother or father's side, the odds are much greater at around 1 in 25. If both parents have Spina Bifida the incidents are approximately 1 in 4. Recent research has shown that the chance of having a baby with Spina Bifida is considerably reduced (up to 70%) if the intake of a vitamin called Folate is taken at the recommended dose at least 1 month before pregnancy and for the first three months of pregnancy. For more information, visit our Folate page.

Education

Although most children with Spina Bifida &/or Hydrocephalus are within "normal" IQ ranges, most will have a variety of cognitive learning disorders. These problems are primarily linked with Hydrocephalus and the Arnold Chiari malformation. For more information visit our Education Menu.

Independence

Depending on the severity of disability, age and the opportunities to socialise and mature in most cases the child will be able to grow up and live an independent adult life in the community.

Employment

More and more people with Spina Bifida &/or Hydrocephalus are seeking and gaining employment in a wide range of areas in the workforce. Due to the advent of agencies and laws promoting equal opportunities, people with disabilities are encouraged to find opportunities for employment. A number of people born with Spina Bifida continue on to higher education such as University and TAFE.