Spina Bifida

Spina Bifida is a congenital disability, which means a person is born already having it. It is a disability that some people are born with because some bones in their spine don't close properly when the spine develops. This happens so early in a woman's pregnancy that she may not even know yet that she is having a baby.

What is Spina Bifida?

Humans are vertebrates, which means they have a spine, or backbone. The spine consists of 33 bones called vertebrae, which provide protection for the spinal cord.

The spinal cord and brain together form the nervous system. All the body's activities are controlled by the brain. When we touch, hear, see, smell and taste, the brain receives information and responds to these messages by causing appropriate parts of the body to move. Messages to the brain are carried by the spinal cord. People with Spina Bifida have a disruption to this communication system.

Find out more about how the nervous system works here: http://yucky.discovery.com/flash/body/pg000136.html

The nervous system and spine of an embyro develop in the first 25 days of pregnancy, and Spina Bifida occurs when one or more vertebrae do not close completely around the spinal cord. This leaves a gap or split which causes damage to the nervous system ('bifid ' means split into two parts).

Image ©2008 Jupiter Images Corporation

For most babies born with Spina Bifida, the visible sign at birth is what looks a bit like a large blister on the back, covered by a thin layer of skin. This is at the location of the gap.

Inside the 'blister', which is called a sac, is tissue that covers the spinal cord, and cerebro-spinal fluid, which bathes and protects the spinal cord and brain. For some people, this is all the sac contains, and they may have little disability other than some nerve damage. For most people with Spina Bifida however, the sac also contains nerves and part of the spinal cord. As a result, they will have some degree of paralysis and loss of feeling in the body below the damaged area. The degree of disability depends on where the damaged vertebrae are and the amount of nerve damage. Because the body below the damaged area is affected, it is likely there will be bowel and bladder problems because the nerves controlling those are at the lower end of the spinal cord.

Within hours of birth, surgery is performed to tuck the sac inside the skin so that it is protected from bursting.

Many children born with Spina Bifida also have hydrocephalus, which means that the brain is draining cerebro-spinal fluid too slowly, causing the head to swell, and putting pressure on the brain. Surgery is performed to insert a drainage tube called a shunt to help drain the fluid and reduce the swelling . Sometimes further surgery is needed later on to straighten the spine or to improve mobility.

There are three forms of Spina Bifida:
Occulta: One or more vertebrae are malformed. This is the mildest form, and people can even be unaware they have it because they will have no symptoms or problems.
Meningocele (muh-nin-go-seal): the spinal cord develops normally, but its protective covering, meninges, protrudes from the opening created by damaged vertebrae and may be exposed.
Myelomeningocele (my-low-meh-nin-go-seal): the spinal cord and the meninges protrude from the opening in the spine. It is the severest form of Spina Bifida.

Children with Spina Bifida often need to use crutches, walking frames or wheelchairs to help their mobility and to give them independence. They may have to wear braces (orthoses) on their legs. People with Spina Bifida may have different degrees of muscle paralysis, spine and limb difficulties, loss of sensation (feeling), and bladder and bowel problems caused by nerve damage (incontinence). They may need different treatments. Today, advances in treatment and management of such difficulties mean that children born with spina bifida can live long and productive lives.

In Australia about 1 out of every 1,000 babies is born with Spina Bifida. The exact causes of Spina Bifida are not yet known. However, research shows that if a woman takes increased folic acid before becoming pregnant and during the first 3 months of her pregnancy, the risk is lowered by about 70-80%.

Kids with Spina Bifida
Kids with Spina Bifida generally go to ordinary kindergartens and schools, maybe even to your school.

Image©2008 Jupiter Images Corporation

Because Spina Bifida causes an interrruption to how signals from some nerves get to and from the brain, children with Spina Bifida may have some difficulty in walking. They may have supports strapped to their legs to help them, or they may be in a wheelchair for at least some of the time. They may not have feeling in parts of their lower body, and can get hurt or cut without realising it.

Children with Spina Bifida may not know when they need to go to the toilet because the nerves that carry those messages to the brain are damaged . This is called incontinence and there are ways in which sufferers deal with that, but when they are kids they are still learning those and sometimes accidents may happen.

Most children with Spina Bifida also have hydrocephalus (say high-droe-kef-a-luss). In most people, fluid that protects the brain constantly drains away and is replaced, but hydrocephalus means that it isn't draining properly. A thin tube called a shunt is inserted to drain the fluid. This sometimes causes headaches, or makes children a bit forgetful at times or have difficulty with numbers.

Having Spina Bifida means children sometimes may be away from school for periods of time. They may have to go to hospital to have surgery to help mobility or replace a shunt, or to be treated for an infection such as a urinary tract infection. They may have to go to a number of different doctors or to have special exercise sessions to help them walk better.

Children with Spina Bifida have difficulties with some things, but each has special abilities just like everyone else, such as writing, music or the arts. They can be good at sports such as swimming, or wheelchair sports such as tennis and basketball. There are a number of wheelchair sports they can learn. They have the same opportunities as everyone else to develop skills in the areas they are interested in or excel in.

Go here to find out more about spina bifida
http://www.mayoclinic.com/health/spina-bifida/DS00417
http://www.ninds.nih.gov/disorders/spina_bifida/detail_spina_bifida.htm

Go here to find out about some mobility aids, in particular wheelchairs and orthoses
http://sbhasa.ca/DailyLiving/bracing.htm

Go here to find information about dealing with incontinence
http://www.mydr.com.au/babies-pregnancy/continence-in-spina-bifida-bladder-and-bowel

Go here to read about children with Spina Bifida
http://kidshealth.org/kid/health_problems/bone/spina_bifida.html http://www.angelfire.com/oh/dofsix/page2.html

Read about Paralympian powerlifter Deahne McIntyre, who has spina bifida
http://www.paralympiceducation.org.au/athletes/profile/deahnnemcintyre
http://www.abc.net.au/news/stories/2008/09/04/2355768.htm?site=/paralympics/2008

Updated July 2009
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