If you have been told that your child has hydrocephalus, this page sets out what that means in plain language - what is happening inside the brain, how doctors look for it, what the treatment involves, and what to expect afterwards. The information here is general, your child's neurosurgeon will discuss what applies specifically to your child.
The brain is surrounded by a clear, water-like liquid known as cerebrospinal fluid (CSF). The fluid is produced inside the brain, flows through small spaces called ventricles, and is then drained away and reabsorbed by the body. The CSF cushions the brain and helps to keep it healthy.
Hydrocephalus develops when this fluid is unable to drain away the way it should. It accumulates inside the ventricles of the brain and they become larger than they should be. The extra fluid then puts pressure on the brain, and that pressure is the cause of the problems your child may be experiencing.
Hydrocephalus is not a single disease but rather a condition with several possible causes. Some children are born with it. Others develop it later in life, for example after a premature birth with bleeding inside the brain, after a brain infection, after a head injury, or because of a brain tumor that obstructs the fluid pathway. The cause matters, it has a direct influence on how the hydrocephalus is treated.
The signs of hydrocephalus depend on the child's age, because the skull of an infant is still soft and growing while in an older child it is fixed.
In babies whose fontanelle is still open, the doctors can often look at what is happening inside the brain using an ultrasound through the soft spot. The scan is painless and uses no radiation.
In older children, the test of choice is the MRI. The MRI uses a strong magnet (with no radiation) to take detailed pictures of the brain and the fluid spaces. Your child will need to lie still throughout the scan, younger children may require light sedation to achieve this.
A CT-scan is sometimes used instead, particularly in an emergency setting because it is fast. CT uses a small dose of X-ray radiation.
Your child's neurosurgeon will look at the scan together with the clinical symptoms to decide which type of hydrocephalus is present and what the next step should be.
Hydrocephalus is treated by giving the trapped fluid a new way out. There are two main options. The choice between them depends on the age of the child, the underlying cause of the hydrocephalus, and the anatomy of the brain, and your child's neurosurgeon will discuss which is the right option for your child.
In some young infants, the neurosurgeon may combine the ETV with an additional step called choroid plexus cauterisation (CPC) to improve the chances of success. The neurosurgeon will discuss this if it applies to your child.
The operation usually takes one to two hours. Your child will remain in hospital for several days afterwards while the team confirms that the system is working as it should. Most children go home with no restrictions on normal day-to-day activities, although the team will discuss activities that may need particular caution, such as contact sport.
When a shunt is in place, your child will need follow-up appointments at regular intervals, generally for life. The good news is that most children with a well-managed shunt grow up to live full lives - they go to school, work, and do everything other children do.
Because hydrocephalus has many possible causes, the long-term outlook depends far more on what caused the hydrocephalus than on the shunt or the ETV themselves. A child in whom hydrocephalus is the only problem will usually do well. A child whose hydrocephalus has come from a serious brain injury or a brain tumor will need additional care directed at that underlying cause.
And importantly, no family is going through this on their own. Paediatric neurosurgery teams, family doctors, school nurses, and patient organisations all work together to support children with hydrocephalus and their families.
After treatment for hydrocephalus, particularly with a shunt in place, certain signs can mean that there is a problem with the shunt or with raised pressure in the brain. Do not wait, contact the neurosurgery team (or go straight to the emergency department) right away if you notice any of the following:
If your child is difficult to rouse, or is having a seizure, this is an emergency, go to the nearest emergency department or call the emergency services immediately.