Rocky Bay provide services previously delivered by the Spina Bifida and Hydrocephalus Association of Western Australia (SBHAWA).
If you, or anyone you know, is living with spina bifida and hydrocephalus, then please call our customer engagement team on (08) 9383 6113 to discuss support available.
The Spina Bifida Community of Western Australia has a Facebook page. This page is a closed group where members share information, stories and photos. Please note you will need a Facebook account and be accepted into the closed group to participate.
|Event||Date and Time||Location|
|Community Cinema Night||29th March, 5:30pm||Burswood Outdoor Community Cinema|
|Friday Sun-downer (18+)||17th May, time TBC||To be confirmed|
|Horse Riding Day||October 11 2019, TBC||To be confirmed|
|Spina Bifida Awareness Day||September||To be confirmed|
What is Spina Bifida
The exact reasons why the neural tube develops incorrectly are not yet known but it is probably connected with both genetic and environmental factors.
Research to date has demonstrated that taking a folic acid supplement does help to reduce the risk of spina bifida. The Health Department recommends that women take 500mcgs of folic acid daily for three months prior to pregnancy and for at least the first month after conception. Where there is a family history of spina bifida (or other neural tube defects) the recommended daily dose is 5mg.
Spina bifida is as common in boys as in girls.
What is Hydrocephalus
Hydrocephalus is commonly called “water on the brain.” There are four spaces called ventricles inside the brain and these produce between 400 and 600mls of a watery fluid called cerebro-spinal fluid (CSF) each day. This fluid flows through narrow pathways from one ventricle to another, then outside over the brain and down the spinal cord. The CSF is absorbed into the bloodstream and the amount and therefore the pressure within the central nervous system are kept within a fairly narrow range. If there is an obstruction in the flow of CSF, it accumulates in the ventricles of the brain causing swelling which leads to compression of the surrounding tissue. In babies, the head usually enlarges to accommodate the swelling, but in children and adults this is not possible as a result of the formed skull. The pressure of the swelling on the brain can lead to brain damage if not treated.
There are many reasons for the inability of the CSF to drain away into the bloodstream and Hydrocephalus can be acquired or congenital (something you are born with). Around 70%-90% of children with the severe form of spina bifida also have hydrocephalus.
Types of Spina Bifida
‘Occulta’ is a Latin term meaning ‘hidden.’ This is the most common form of spina bifida. While exact figures are unknown, it is estimated that 5% – 10% of the population have this form, with many never having any symptoms, or even knowing that they have the condition.
With occulta there is a defect in the vertebrae but the spinal cord and nerves are usually undamaged. There is rarely any opening on the back, although in some instances there are other signs on the back that flag the condition is present. These signs, at the site of the underlying defect include: a hairy patch, a dimple, a skin tag, a patch of pigmentation or an area of thickened skin.
Spina Bifida Cystica
With this form of spina bifida there is the visible sign of a sac or cyst on the back of the new born, and may look a little like a large blister. There are two types of spina bifida cystica:
This is the least common form of spina bifida.
With this form of spina bifida the meninges (the covering around the spinal cord) extends out through an opening in the split vertebrae and shows as a lump or sac on the back. The sac is filled with cerebro-spinal fluid (a liquid that flows around and bathes the central nervous system). While the development of the spinal cord may be affected, impairment is usually less severe than the other form of spina bifida cystica.
This is the most serious form of spina bifida cystica.
With myelomeningocele the cyst contains not only meninges and cerebro-spinal fluid, but also a portion of the spinal cord and nerves which extend through the opening in the vertebrae. Children with myelomeningocele usually require surgery immediately after birth to reduce the chance of infection and to maintain levels of functioning.
As the spinal cord is either damaged or incorrectly developed, there is always some form of paralysis and loss of sensation below the site of the damaged area. However, the extent of the disability differs in severity from individual to individual according to the amount and severity of spinal cord and nerve damage.
The impact spina bifida has on an individual differs from person to person, even where the lesions occur in the same area of the spine. The reason for this is that some nerves end at the site of the lesion, some continue through the lesion with little ill-effect, and others, though continuing through the lesion, are damaged.
Depending on the amount and severity of damage to the nerves, individuals may experience difficulty with mobility, and bowel and bladder management, as well as altered skin sensation. Additionally, the majority of people who are born with myelomeningocele (the most severe form) will also have Hydrocephalus.
As the nerve tissue cannot be replaced or repaired, there is no cure for spina bifida. Treatment for the variety of effects of spina bifida may include surgery, medication, and physiotherapy. Many individuals with spina bifida will need assistive devices such as braces, crutches, or wheelchairs. Ongoing therapy, medical care, and/or surgical treatments may be necessary to prevent and manage complications throughout the individual’s life. Surgery to close the newborn’s spinal opening is generally performed within 24 hours after birth to minimize the risk of infection and to preserve existing function in the spinal cord.
Associated medical conditions
It is possible to have complete paralysis, hydrocephalus, and other congenital defects with spina bifida.
Living with spina bifida
Spina bifida is most often diagnosed prenatally, or before birth. Occasionally, mild cases go unnoticed until after birth. Very mild forms (spinal bifida occulta), in which there are no symptoms, may never be detected.
The prognosis for individuals with spina bifida depends on the number and severity of abnormalities. Prognosis is poorest for those with complete paralysis, hydrocephalus, and other congenital defects. With proper care, most children with spina bifida live well into adulthood.
Most people with spina bifida fall within the ‘normal’ range of intelligence and will cope well with mainstream schooling.
Some children, however, will have difficulty with fine motor skills and concentration and will need the assistance of a special needs teaching assistant both in the classroom and for toileting and mobility issues. As remedial surgery progresses the individual may require less assistance.
As with other cross sections of the community, a large number of people with spina bifida go on to post secondary education.
Assistive devices can help people with spina bifida gain more independence and overcome their movement difficulties.
People who are unable to use their legs will usually require a wheelchair. Electric wheelchairs are available, but using a manual wheelchair can help to maintain good upper body strength.
Leg braces and other walking aids can be used by people who have weakness in their leg muscles.
We encourage anyone living with Spina Bifida or Hydrocephalus to contact our customer engagement team on (08) 9383 6113 to discuss support available.