This is a mild form of spina bifida which is very common. Estimates vary but between 5% and 10% of people may have spina bifida occulta.

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Spina Bifida Occulta
What is Spina Bifida? whatsoever. Often people only
become aware that they have
Spina bifida (meaning split spine) is spina bifida occulta after having
a fault in the spinal column in which a back x-ray for an unrelated
one or more vertebrae (the bones problem.
which form the backbone) fail to
form properly. This leaflet is about However, for a few (about 1 in
the “hidden” form of spina bifida 1,000) there can be associated
called spina bifida occulta. For problems.
information on other forms of spina The outer part of
bifida, see Shine’s information the vertebrae is
sheet number ‘What is Spina not completely
Bifida’. joined. The
spinal cord and
What is Spina Bifida its covering (the
Occulta? meninges) are
undamaged
This is a mild form of spina bifida
which is very common. Estimates Hair (or dimple)
vary but between 5% and 10% often at site of
of people may have spina bifida defect
occulta.
Skin
It must be emphasised that,
for the vast majority of those
affected, having spina bifida
occulta is of no consequence

2. Spina Bifida Occulta
is usually innocent and does not
Why do some people have usually indicate an underlying spina
complications? bifida occulta.
The term ‘spina bifida occulta’ is, For people with spina bifida occulta,
in fact, not one but two separate there may be associated difficulties
conditions which have completely which may include: foot deformity,
different consequences. This leads weakness and reduced sensation
to confusion when such a diagnosis of the legs, change in hand
is used without qualification. function, bladder infections and
incontinence and bowel problems.
For the majority of people with
spina bifida occulta, it is a minor These problems arise because
fault involving one vertebra in the the spinal cord becomes tethered
lower back. The unfortunate use to the backbone. Often a child
of this term for such a minor fault who is previously symptomless
can lead to distress for the person may experience difficulties during
concerned. However, it should be the rapid growth of adolescence.
considered as insignificant, both for This is because the nerves of
that person and his or her children. the spinal cord are stretched
and the symptoms may become
For a small number of people with progressively worse.
spina bifida occulta the fault is
more extensive. Either the split in It is important to consult a GP,
the spine is bigger, or may involve who, if appropriate, can refer to a
two or more vertebrae. There may neurosurgeon. Specialist scanning
be visible signs on the skin such procedures such as MRI (magnetic
as a mole or naevus (birthmark), a resonance imaging) give a clear
dimple or sinus (hole), or a patch of picture of the nerves and spinal
hair. If these are positioned above column and the neurologist will
the level of the buttocks and in the be able to advise on the most
midline (centrally) there may well be appropriate treatment.
a significant underlying spina bifida
occulta. A dimple or sinus that People with spina bifida occulta and
is below the level of the buttocks progressive (worsening) symptoms

3. of a stretched or tethered spinal cord or may not be present at birth and
need to have an operation on their may be progressive. Those with
lower spine to release the tension in significant spina bifida occulta have
the spinal cord. This is often a fairly a risk, higher than in the general
simple and effective procedure, population, of having children with
but occasionally the operation is spina bifida which could be cystica
very complicated and involves a or occulta. This risk is between 2%
(2% - 5%) risk of failure. It is often and 4% and is the same risk that
possible to improve symptoms in those with spina bifida cystica have
the legs with this operation, but it of passing on the disability.
is rare for bladder function to return
to normal. The main purpose of a However, the risk of having a
“detethering operation” is to stop baby with spina bifida can be
any further deterioration in leg or dramatically reduced by taking folic
bladder function and it is important acid (a B-group vitamin).
that a neurosurgical assessment is
made as early as possible after the Reduce the risk of having a
onset of symptoms. The operation baby with spina bifida
is probably best done by those
neurosurgeons who have a special The non-significant form of spina
interest in the condition. bifida occulta carries no more risk
of having children with spina bifida
What are the implications? than that for the general population.
However, the Government
For the vast majority of people recommends that all women
with the non- significant form of of childbearing age take a daily
spina bifida occulta, there are no supplement of 0.4mg of folic acid
known complications and there is for one month before conception
no higher risk of having children and for the first three months of
with spina bifida than there is in the pregnancy as well as eating a diet
general population. rich in folic acid. This is because in
the majority of cases, where a baby
For those with the more complicated is born with spina bifida, there is no
spina bifida occulta, there may be family history of the disability.
neurological problems which may

4. For those with the more complicated Women who know they have spina
spina bifida occulta, and therefore bifida occulta and are planning to
an increased risk of having children have a baby can ask for a referral to
with spina bifida, it is necessary to a geneticist who will consider both
take a higher daily dose of folic acid the family history and individual
for the same period. This 5mg tablet medical circumstances and advise
is available only on prescription. on the risk of having a baby with
gofolic.co.uk spina bifida.
More information and advice Shine’s national and regional staff,
area and specialist advisers will
If someone suspects that they give personal advice and support
have occult spina bifida and is whenever possible.
experiencing any of the problems
described above, they should ask
their GP for referral to a neurologist
who can investigate and advise
about treatment.
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