A fault in the development of the spinal cord and surrounding bones (vertebrae) leaves a gap or split in the spine. The spinal cord has not formed properly, and may also be damaged. To help understand what it is, it is useful to explain the composition of the nervous system.

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What is Spina Bifida?
Spina bifida literally means for the body is very important and
‘split spine’ needs protection.
A fault in the development of the The Spine
spinal cord and surrounding bones
(vertebrae) leaves a gap or split The spine is made up of 33 bones
in the spine. The spinal cord has or vertebrae. The vertebrae have
not formed properly, and may also two main functions. One is to
be damaged. To help understand provide anchorage for muscles
what it is, it is useful to explain the so that we can move as the brain
composition of the nervous system. dictates to those muscles. The
other is to provide protection to
The Central Nervous System the spinal cord.
The central nervous system consists The Neural Tube
of the brain and the spinal cord.
All activities are controlled by the The central nervous system and
brain which receives information spine develops between the 14th
from touching, seeing, feeling, and 23rd day after conception.
tasting and hearing – responding Spina bifida occurs when the
to this information by initiating the neural tube fails to close correctly.
appropriate movements of different The vertebrae also fail to close
parts of the body. Messages from in complete rings around the
the brain are carried to different parts affected portion of the spinal cord.
of the body by the spinal cord which This leaves a gap posteriorly (at
runs down the centre of the spinal the back), involving one or more
column. This communication system vertebrae. The fault may occur in

2. What is Spina Bifida?
one or more of the vertebrae but it
is most common around waist-level. Types of Spina Bifida
Nerves which control the movement The three main types of spina bifida
of different parts of the body always present at birth are:
8 Cervical nerve Spina Bifida Cystica
pairs Use of (cyst-like)
neck, shoulders
and arms The visible signs are a sac or cyst,
rather like a large blister on the
12 Thoracic back, covered by a thin layer of
nerve pairs skin.
Use of hands There are two forms:
and fingers,
chest and 1) Myelomeningocele
abdomen, lower (meningomyelocele)
back and hip
Myelomeningocele is the most
5 Lumbar nerve serious and more common of the
pairs. Use of two forms of cystic spina bifida.
‘seat’ muscles Here the cyst not only contains
to keep body tissue and cerebro-spinal fluid but
erect, leg, knee also nerves and part of the spinal
and foot and in cord. The spinal cord is damaged
men, ejaculation or not properly developed. As
a result, there is always some
5 Sacral nerve paralysis and loss of sensation
pairs below the damaged region.
Bowel and The amount of disability depends
bladder and in very much on where the spina bifida
men control of is, and the amount of affected nerve
erections tissue involved. Bladder and bowel

3. problems occur in most people with cerebro-spinal fluid, which bathes
myelomeningocele, as the nerves the central nervous system.
come from the bottom of the spinal Development of the spinal cord
cord, so are always below the may be affected, but impairment
lesion. It is also necessary to have is usually less severe than
intact nerve pathways to the brain myelomeningocele. Meningocele
for complete control and sensation. is the least common form of spina
bifida.
Spinal cord
CSF
Skin
Meninges
Cerebrospinal
Skin Fluid (CSF)
The outer part of the vertebrae is split. The outer part of the vertebrae is
The spinal cord and meninges are split. The spinal cord is normal.
damaged and pushed out through The meninges are damaged and
the opening. Hydrocephalus is pushed out through the opening.
usually associated with this form.
Spina Bifida Occulta
2) Meningocele (hidden form)
In this form, the sac contains This is a mild form of spina bifida
meninges (tissues which cover which is very common. Estimates
the brain and spinal cord) and vary but between 5% and 10%

4. What is Spina Bifida?
of people may have spina bifida
occulta. It must be emphasised Encephalocele
that, for the vast majority of those
affected, having spina bifida occulta This is a sac which is formed when
is of no consequence whatsoever. the bones of the skull fail to develop.
Often people only become aware It may contain only cerebro-spinal
that they have spina bifida occulta fluid or part of the brain may also
after having a back x-ray for an be present in the sac, resulting in
unrelated problem. brain damage.
However, for a few (about 1 in Anencephaly
1,000) there can be associated
problems. See Shine’s information This is where the brain does not
sheet on ‘Spina Bifida Occulta’. develop properly or is absent, and
the baby is either still born or dies
shortly after birth. Contact Shine
for further information.
Hydrocephalus
Most babies born with
Hair (or dimple) myelomeningocele also have
often at site of hydrocephalus (from the Greek
defect hydro, meaning water, and
cephalie meaning brain). This is an
Skin accumulation of cerebro-spinal fluid
which arises from an imbalance
in the production and drainage
of that fluid. Further information
about hydrocephalus is given in
Shine Information Sheet ‘What is
The outer part of the vertebrae is not Hydrocephalus?.
completely joined. The spinal cord
and its covering (the meninges) are
undamaged Encephalocele

5. whether the child should have
Why does Spina Bifida surgery to repair the defect in the
happen? back: this surgery will take place
in a specialist unit usually within
At present causation is unknown 48 hours. Some surgeons do not
and research continues. However, close the back surgically but leave
we do know that taking folic acid it to heal without intervention.
supplements can reduce the risk
of spina bifida in unborn babies. Genetic Counselling
For families with no history of
spina bifida the Dept. of Health Prospective parents who have had
recommends women take an ‘over a baby with a neural tube defect,
the counter’ dose of 400mcg daily. or who have a close relative with
For families where there is a history a neural tube defect, should be
of spina bifida, a prescription dose refered to a genetic counsellor for
(5mg) of folic acid is needed. Folic advice.
acid should be taken daily for at
least one month prior to conception Support
and through to the 12th week of
pregnancy. Even with fortification Shine plays a leading role in
of flour products with folic acid, a providing support, through national
supplementary tablet is needed. and regional offices and local
The exact reasons why the neural associations, it offers information
tube develops incorrectly are and practical advice. Families who
not yet known but it is probably have a child or adult with a disability
connected with both genetic and can sometimes feel very isolated
environmental factors. and Shine can provide often much
needed contact with other families.
How is Spina Bifida
treated ? Information and publications are
available on all aspects of care and
The baby will be seen by a management. Our national and
paediatric surgeon or paediatric regional staff, area and specialist
neurosurgeon shortly after birth. advisers will give personal advice
The surgeon will then decide and support whenever possible.

6. Our services are available to
individuals with the disabilities,
parents, health professionals,
schools, local authorities and other
interested organisations.
Help us
Shine relies on people’s generosity and support so we can help our clients
who depend on us for help and advice - people with hydrocephalus,
spina bifida, their families and carers. To donate to Shine please visit
www.shinecharity.org.uk or call 01733 421329.
This information has been produced by Shine’s medical advisers and
approved by Shine’s Medical Advisory Committee of senior medical
professionals.
Shine - Registered charity no.249338
To see our full range of information sheets and to find out how to donate
to Shine please visit www.shinecharity.org.uk