Information for Parents/Parents to be about Hydrocephalus

It can be frightening to be told that your child has hydrocephalus, especially if you have not heard about it before or know little about it.

This page will try to answer some of the questions parents ask and tell you how to find out more.

Most importantly, your child needs the same love and attention as any other child but try not to wrap him or her in cotton wool - children need to be allowed to make mistakes and find out for themselves.

What is hydrocephalus?

Inside everyone's brain there is a clear fluid called cerebrospinal fluid or CSF for short. The CSF is made inside spaces in the brain called "ventricles". The CSF flows out over the surface of the brain and down the channel in the middle of the backbone (spinal column) to bathe and protect the brain and spinal cord. Then the fluid is absorbed into the bloodstream.

Hydrocephalus happens when this fluid cannot drain away into the bloodstream because the normal pathways are blocked. As the fluid is still being made by the brain, the build up of CSF will cause pressure to rise inside the brain and this can lead to damage.

Why does it happen?

It can be caused by a brain haemorrhage (which may be as a result of a premature birth), meningitis, cysts or brain tumours or other rare causes. Many babies with severe spina bifida will also have hydrocephalus (see our information sheets 'What is spina bifida?'/'Spina bifida - a leaflet for parents'). Some children are born with hydrocephalus and the cause is unknown.

How is hydrocephalus treated?

This is usually by making a new pathway to drain off the excess fluid: either by inserting a very fine tube (called a shunt) inside one of the spaces in the brain or by making a small hole in the floor of one of the spaces (called a ventriculostomy). Both treatments involve an operation. Any hair that has to be shaved off for an operation will grow back and cover the scar.

Then what happens?

These treatments control hydrocephalus. Although they are usually intended to last for life (unless the hydrocephalus is only temporary), they can need revising or can stop working. It is very important to know about any problems that might arise so that these can be dealt with quickly (see ASBAH's information sheet: 'What is hydrocephalus?')

How will hydrocephalus affect my child?

Like all babies and children, those with hydrocephalus are individuals and the effects of the disability will vary. There can be specific learning difficulties such as poor concentration, or problems with short term memory, organisational skills and motivation. There may also be effects on eyesight (eg some children have a squint) and perception (eg judging distances).

Sometimes, there can be subtle effects on co-ordination so that the child appears clumsy. Your child may or may not experience some of these difficulties and having hydrocephalus does not mean he/she can't enjoy the everyday things of life. As a career woman with acquired hydrocephalus told us:

"My hydrocephalus developed when I was 15 (21 years ago). My two greatest achievements are my daughter and son and being able to drive."

Will my child be able to go to an ordinary school?

Most children with hydrocephalus are educated in mainstream education with their brothers and sisters - sometimes with extra help, if they have any learning difficulties. If they need additional support ASBAH can help you to get this.

Will my child be able to take part in games?

Generally, yes, although children with shunts may be advised not to take part in some contact sports (such as rugby or judo). If in doubt, ask your neurosurgeon for advice.

Do people with hydrocephalus have normal life expectancy?

As long as the treatment for hydrocephalus is working effectively, the prospects are good. We know of lots of adults who have 'grown up' with their shunts (shunts were invented in the 50s and became widely used in the 1960s).

How can I help my child?

Give your child lots of stimulation, for example, talk about what you are doing, right from birth and play with your child. Find out what services are available locally; there may be a portage scheme (a pre-school home advisory service). Ask your health visitor or ASBAH adviser.

ASBAH provides:

the Hydrocephalus Network - providing information and a contact point for families
Shunt Alert Card/Ventriculostomy Card
information and advice on all aspects of living with hydrocephalus
specialist advice on education
a bi-monthly magazine
study days and courses for parents and professionals, and individuals who have hydrocephalus
family weekends, where you can meet other families. A full programme is arranged for parents, young children with hydrocephalus and their brothers and sisters
small grants towards hospital visiting, equipment, holidays etc.

'Hydrocephalus and YOU' is a book published by ASBAH which contains a wide range of information on hydrocephalus, possible difficulties you might come across and how to help your child.

Information sheets and booklets available from ASBAH include:

A full list is available from our Information Department, ASBAH House, 42 Park Road, Peterborough PE1 2UQ, tel: 01733 555988.

Contacting ASBAH

When you contact ASBAH, you can be sure of a friendly reception coupled with experience and professionalism. You may just want to have written information, or a confidential chat on the phone, or further support through one of our area advisers. Whether you want to contact us occasionally or need more involvement with the association, we are here to help.

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