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Spina Bifida and Hydrocephalus

What is Spina Bifida?

Spina Bifida is a deformity occurring during early pregnancy when the bones of the spine are not closed completely leaving the nerves, spinal cord and their protective sheathing exposed.

This can result in damage to the spinal cord and nerves. The physical consequences depend upon the level of lesion (or break) ad the amount of damage to the spinal cord. In general there are three types of Spina Bifida.

  1. Spina Bifida Occulta- an opening in one or more of the vertebrae (bones) of the spinal column without apparent damage to the spinal cord
  2. Meningocele- the protective covering around the spinal cord pushed out through the opening in the vertebrae in a sac called the 'meningocele' with the spinal cord remaining intact
  3. Myelomeningocele- the most sever form of Spina Bifida, in which a portion of the spinal cord itself protrudes through the back

Some degree of paralysis may occur and loss of sensation in the parts of the body below the level of the damage. The upper limbs may be affected.

What is Hydrocephalus?

Hydrocephalus is caused by an excess of fluid that may exert pressure on the brain. In some children the fluid drains away on its own, if not the ventricles of the brain swell and the brain tissue is stretched and squashed. The skull bones in babies and younger children are not fixed together as they are in later life, and the pressure causes the head to increase in size. However, it is important to realise that hydrocephalus can also arise in older children and in adults, when the skull bones are fixed and the head cannot increase in size.

In some cases a device known as a 'shunt' is implanted to help the fluid drain. Shunts usually work very well but some children have problems with them from time to time eg. blockage or infection.

Living with Spina Bifida and Hydocephalus

Some young people have poor co-ordination, which may affect handwriting, games and activities. In particular ball-handling skills may prove difficult for these young people. They are often fluent talkers and may give the impression that they understand without, in fact, doing so. Hydrocephalus can lead to learning difficulties. They may have difficulty with paying attention, expressing or understanding language, and grasping reading.

In the more severe forms of Spina Bifida, children are paralysed in the lower limbs, and therefore use a wheelchair. Access to buildings and facilities may need to be considered.

Practical tips

Exercise is very important, especially for those who are partially paralysed. This will help to improve the functioning of many of the body organs. Movement also aids circulation so it should be encouraged, following discussion with parents.

Young people with Spina Bifida are prone to kidney damage and are often encouraged to drink a lot of fluid to keep the kidneys functioning well. They may therefore need extra drinks during hot weather. Parents and medical advisers will be able to give you details of a young person's requirements.

Try not to make too many assumptions.

What else do I need to know?

It is advisable to discuss the parent's method of recognising an incorrectly working shunt and the course of action to take, as the young person will need urgent medical help.

If a young person with Hydrocephalus develops a severe headache, drowsiness or vomiting this may indicate that the shunt is not working properly and medical attention should be sought immediately.

If a young person with Spina Bifida develops a high temperature this may be indicative of a urinary infection and the parent should be contacted immediately for medical attention.

Some young people with myelomeningocele Spina Bifida may need training to manage their bladder and bowel functions or have little or no control of their functions. In some cases this may require the need for catheterisation. Discuss with the individual and parents/ carers how this can be managed during nights away.

Support organsiations

SHINE (Spina Bifida, Hydrocephalus, Information, Networking, Equality)

Telephone: 01733 555988

Website: www.shinecharity.org.uk

Scottish Spina Bifida Association

Helpline (family support): 08459 111112

Website: www.ssba.org.uk


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