Many frequently asked questions [FAQs] about spina bifida and hydrocephalus are listed below.

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[Image: Tim Williams from Victoria with Wayne Jackson President of the AFL]

FAQs

• What causes spina bifida?
• Can spina bifida be prevented?
• Does everyone with spina bifida have hydrocephalus?
• Will my child with spina bifida be able to walk?
• What is a neural tube defect?
• Does spina bifida affect everyone in the same way?
• How many babies are born with spina bifida?
• How many people have spina bifida?
• What is the life expectancy of a person with spina bifida?
• Does spina bifida get worse with age?
• How does spina bifida affect adults?
• What is the history of treatment for spina bifida?

 

What causes spina bifida?
The cause or causes of spina bifida are still largely unknown, but it is thought to result from a combination of both genetic and environmental factors. Research in the early 1980s confirmed that inadequate metabolism of folic acid (a B vitamin) by the mother early in the pregnancy was a factor. It is also known that having a close family history of spina bifida or another neural tube defect increases the risk significantly. Some other environmental factors known to increase the risk of spina bifida are maternal intake of some anti-epileptic medications and maternal fever during the critical time of neural tube closure (3rd – 4th week of pregnancy).

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Can spina bifida be prevented?
Studies have shown that up to 70% of cases of spina bifida can be prevented by the maternal intake of a 0.5 mg supplement of folic acid daily from 1 month prior to conception to 3 months afterwards. Because only about half of all pregnancies in Australia are planned, it is important for all women of child bearing age to take the daily supplement. These supplements are inexpensive and can be purchased through chemists, supermarkets and health food stores. Folic acid (a B vitamin) is also found in asparagus, Brussels sprouts, broccoli, cauliflower, peas, beans, lentils, spinach, potato, oranges, and vegemite. Some breakfast cereals and breads are fortified with folic acid and these can be found by checking the nutrition information panel on the products.

Mothers at a higher risk of having a child with spina bifida i.e. they have a close family history of spina bifida (or other neural tube defect such as anencephaly) or are taking some anti-epileptic medications cannot get sufficient folic acid in the natural diet to reduce their risk. They require a higher 5 mg dose of folic acid and should consult their doctor before pregnancy.

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Does everyone with spina bifida have hydrocephalus?
About 80% - 90% of people with spina bifida will also have hydrocephalus, and about 90% of these will need surgery to insert a shunt to treat the hydrocephalus shortly after birth.

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Will my child with spina bifida be able to walk?
This depends to what extent the nerves which control the leg and hip muscles have been affected by spina bifida. In general, the higher the lesion (site of spina bifida) on the back the less likely a child will be able to walk. Most children with a lesion in the lower sacral area will be able to walk with little or no help. A lesion in the lower lumbar or upper sacral area may mean that a child will require aids to walk and some may need to use a wheelchair, especially later as their upper bodies grow and become heavier. Children with a lesion in the upper lumbar or lower thoracic areas will almost certainly need to use a wheelchair. Conversely, of the small number of children who are born with a lesion in the upper thoracic or cervical areas, only a minority will have limb paralysis.

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What is a neural tube defect?
Neural tube defects, which include spina bifida and anencephaly, occur very early in pregnancy during the third and fourth week. Part of the embryo, the neural plate, a flat strip of cells, folds in the centre, recesses into the embryo and continues folding to form a tube called the neural tube. When two edges of the fold fail to join together to fully form the tube, and the tube does not descend completely below the surface of the embryo a neural tube defect results. As development of the embryo continues, the neural tube develops into the brain at one end and the spinal cord at the other. A failure to fuse at the top end leads to anencephaly where the forebrain, meninges (covering of the brain and spinal cord), vault of the skull and scalp all fail to form. A failure to fuse at the lower end leads to spina bifida where the bone, meninges, muscle and skin fail to form around the spinal cord compromising the development of the spinal cord and brain and leaving the spinal cord exposed.

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Does spina bifida affect everyone in the same way?
There are a number of areas in which people with spina bifida are typically affected. These are the ability to feel and move the lower limbs; bladder and bowel continence; and learning disabilities associated with hydrocephalus. However, if the lesion is in the lower sacral area, then the person may have some control of their continence and be able to walk.

If the person does not have hydrocephalus, then they will not have any of the associated cognitive problems or learning disabilities usually associated with spina bifida. There are also quite a number of other conditions associated with spina bifida which people may or may not have and references to these will be found in other sections of this website.

People with spina bifida are as diverse as people everywhere. Some will face many of the difficulties of spina bifida and some will face few. Some will have limited abilities and others will be very able. But every person needs to be taken as an individual because all people are.

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How many babies are born with spina bifida?
In Australia about 1 in every 1600 pregnancies will be affected by spina bifida. One in 800 by a neural tube defect. Because spina bifida can usually be seen on a prenatal ultrasound and parents have the choice to terminate the pregnancy, the birth rate is significantly lower. About 50 or 60 children with spina bifida are born each year in Australia. The incidence worldwide varies between geographical areas and different genetic and racial groups.

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How many people have spina bifida?
In Australia there are about 5 000 people with spina bifida. Worldwide there are quite a lot more - about 10 million.

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What is the life expectancy of a person with spina bifida?
This is difficult to answer. Shunts to treat hydrocephalus were not invented until the late 1950s. Prior to this most people born with spina bifida didn’t survive. This means that there are very few old people around with spina bifida and fewer still who have died of old age. So it is difficult to predict how long a person with spina bifida will live. It is thought that the higher number of infections, surgical procedures and related conditions that people with spina bifida have may have an impact on their life expectancy. In addition the severity of the condition means that some babies will not survive the neonatal period.

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Does spina bifida get worse with age?
Spina bifida, itself, is not a degenerative condition. It doesn’t get worse with age. However, some sections of the body can deteriorate more quickly than usual. For instance, shoulder joints can become arthritic because they are called on to do work that they weren’t designed for, pushing a wheelchair and lifting for transfers. Also, people with spina bifida find it easier to become overweight as they age and this has significant effects on the person’s health.

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How does spina bifida affect adults?
Adults with spina bifida have the same physical and medical issues to deal with as children, except that those issues will reach a plateau when the person finishes their growth and development. Adulthood brings a larger range of problems though. It is the time that people are establishing careers, a home and often a family of their own. There can be significant barriers to people with a physical disability achieving in these areas. People who have hydrocephalus as well as spina bifida may find that their learning disabilities further limit their ability to achieve. They may manifest as difficulty with solving problems, planning and organising, remembering to do things and forming relationships.

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What is the history of treatment for spina bifida?
Before the late 1950s most people born with spina bifida didn’t survive. Population studies in England show that only 12% of children born with spina bifida survived to their 11th birthday. Shunts to treat hydrocephalus were invented around this time and these allowed many more children to survive the neonatal period. This increase in survival rate further prompted the development of treatments to minimise infections and avoid renal failure, which then became the leading cause of mortality. There have been many advances in medical treatment for people with spina bifida since then and currently in three centres in the United States surgery is being performed on the foetus at about week 21 of the pregnancy to maximise the child’s chances in life.

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