Spina Bifida and Hydrocephalus (FAQs)

What is spina bifida?
What is hydrocephalus?
What are the chances of it happening in another pregnancy?
How do NTDs affect a person?
Does a person with spina bifida look different?
Can a person with NTD walk?
Do people with spina bifida and hydrocephalus need medical treatment?
What sorts of lives do people with spina bifida and hydrocephalus lead?
Can people with spina bifida and hydrocephalus have children?
Do people with spina bifida and hydrocephalus have a reduced life expectancy?
Who can I contact for more information?

What is Spina Bifida?
Spina bifida is a neural tube defect, (NTD) and occurs when the neural tube (an embryonic structure which develops into the brain and spinal cord) does not develop correctly. It happens in early pregnancy, between the 14th and 23rd days after conception. Vertebrae fail to fuse round the spinal cord at the affected point, leaving a gap or split. The spinal cord may bulge through this gap. Nerves and nerve pathways between the brain and body may be damaged below this lesion resulting in loss of sensation and movement. Spina bifida can occur anywhere along the spine. Anencephaly is also a neural tube defect, occurring when the head end of the tube fails to close. The cortex of the brain and bones of the top of the skull do not develop.
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What is hydrocephalus?
Hydrocephalus comes from the Greek words "hydro" meaning water and "cephalie" meaning brain. Hydrocephalus occurs when drainage pathways of cerebral spinal fluid (CSF) become blocked CSF is a watery fluid produced constantly inside the 4 spaces, or ventricles inside the brain. Usually, this fluid flows through narrow channels from one ventricle to the next, and over the outside of the brain and spinal cord .It is absorbed back into the bloodstream, so the amount of fluid and pressures inside the head are kept constant.In hydrocephalus, the CSF accumulates in the ventricles, causing the head to enlarge and the pressures to rise. Hydrocephalus can occur alone, and more than 85% of people with spina bifida also have hydrocephalus.
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What are the chances of it happening in another pregnancy?
After a baby with hydrocephalus is born, there is a chance of another baby being affected of around 1in 35. However there is clear evidence that the risk of spina bifida can be lowered by taking folic acid before and during a pregnancy- 5mg if there is a family history or if you have already had a pregnancy affected by spina bifida.
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How do NTDs affect a person?
Unfortunately, babies with Anencephaly do not survive for long after birth. The effects of spina bifida vary, depending on the size and position of the lesion on the spine, and the nerve damage involved. There may be paralysis below the level of the lesion, curvature of the spine and bladder and bowel problems. Hydrocephalus may affect memory, organisational skills and coordination, and cause headaches. Hydrocephalus often needs treatment to control the pressures inside the head.
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Does a person with spina bifida look different?
Some people with spina bifida have paralysis of the legs, and may use a wheelchair or other walking aid. Some may have a curvature of the spine and many people will have a scar at the site of the lesion.
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Can a person with NTD walk?
Whether people with spina bifida are able to walk depends on the size of the lesion, the position on the spine, and the degree of nerve damage involved. Some people use wheelchairs all their life, others become wheelchair users in late childhood or in adulthood, and others walk with or without aids.Hydrocephalus may cause some problems with balance and coordination, but rarely affects the ability to walk.
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Do people with spina bifida and hydrocephalus need medical treatment?
Babies with spina bifida often need surgery to close repair the lesion on their back This is usually carried out within 48 hours of birth. Operations to treat hydrocephalus may also be done in the first few weeks of life. This is usually to insert a "shunt", a device to divert CSF around the blockage into another area of the body where it can be absorbed back into the bloodstream. Bladder problems may need managing with intermittent catheterisation, and surgery may be required later in life to promote independent management and improve continence. People with spina bifida and hydrocephalus need regular checks on their kidneys and shunts to ensure they stay well. Children and adults with spina bifida may need orthopaedic operations to correct their posture, or wear splints to keep their feet and ankles in a good position.
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What sorts of lives do people with spina bifida and hydrocephalus lead?
This varies widely between individuals, with many people leading full and active lives. Loss of mobility, continence issues and the subsequent need for others to provide care can affect the quality of life for some; hydrocephalus can make living independently with spina bifida more challenging.
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Can people with spina bifida and hydrocephalus have children?
People with hydrocephalus alone do not have particular problems having children. Some men with spina bifida need medical assistance to become fathers; women with spina bifida need to take advice on their own health status before starting a family.
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Do people with spina bifida and hydrocephalus have a reduced life expectancy?
The conditions in themselves do not reduce life expectancy, but health issues such as shunt blockages, kidney damage may do so. A person with these conditions can have regular check-ups to hopefully pick up such problems at an early stage.
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Who can I contact for more information?
Association for Spina Bifida and Hydrocephalus (ASBAH)
ASBAH House,
42 Park Road
Peterborough
PE1 2UQ
Tel: 01733 555988
Fax: 01733 555985
Email: postmaster@asbah.org
http://www.asbah.demon.co.uk