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Hydrocephalus – previously referred to as ‘water on the brain’ – affects around 1 in every 770 babies each year.
It’s an abnormal build-up of cerebrospinal fluid within the fluid-filled sacs (or ventricles) of the brain. The excess fluid causes the ventricles to increase in size, putting pressure on the brain. If left untreated, hydrocephalus can lead to permanent brain damage, and death.
Early diagnosis can help improve outcomes for children with hydrocephalus and, whilst there is no cure for the condition, there is treatment.
The aim of hydrocephalus treatment is to divert the excess fluid away from the ventricles, and reduce the pressure in and around the brain.
This is often done using a device called a shunt, which is a thin plastic tube that sits within the ventricles permanently, draining the excess fluid to another part of the body, such as the abdomen (tummy).
What are the signs of hydrocephalus?
The symptoms and signs of hydrocephalus vary depending on the age of the child.
Most are caused by the raised pressure within the brain. Following treatment to remove the excess fluid from the ventricles, and reduce the pressure around the brain, most symptoms should resolve.
Symptoms of hydrocephalus in infants
- Rapid head growth (your health visiting team/GP/doctor can measure this)
- Unusually large head
- Tense/bulging fontanelle (soft spot on top of head)
- Persistent vomiting
- Excessive irritability
- Extreme sleepiness
- Prominent scalp veins
- Eyes that are fixed looking downwards (“sunset eyes”)
- Poor feeding
- Developmental delays (e.g., not meeting milestones)
- Seizures
Symptoms of hydrocephalus in children and adolescents
- Severe headache
- Nausea and vomiting
- Extreme tiredness
- Irritability
- Problems with movement/balance/coordination
- Changes in personality
- Changes in performance at nursery/school
- Developmental delays (e.g. not meeting milestones)
- Changes in vision
- Swelling of the optic discs (papilloedema)
- Seizures
How is it spotted?
For babies, rapid head growth may be the first sign of hydrocephalus.
Babies should have their head circumference measured at the following timepoints:
- Around 24 hours after birth
- At the routine 6–8-week check
- And at any time there are concerns about growth, development, or general health. This could include poor weight gain, persistent vomiting, difficulty feeding, poor head control, excess sleepiness, excessive irritability, high-pitched crying, and failing to meet milestones.
If any concerns are raised, your baby might require further measurements.
Your midwife, GP or health visiting team can all do these measurements, so don’t be afraid to ask. These measurements should be taken using a disposable paper tape measure at the widest point of the head. It’s good practice for your healthcare professional to take three measurements and plot the largest of these values.
Your baby’s head circumference measurements should be plotted on the appropriate growth chart for (gestational) age and sex in their Red Book. Special growth charts should be used for premature babies.
A healthcare professional can then determine whether the head size and growth over time is normal for their age and sex. Rapid head growth can be a sign of hydrocephalus.
If rapid head growth is suspected, a prompt assessment and specialist referral is crucial. With early detection, effective treatment, and the right support, most children with hydrocephalus will go on to live very fulfilling lives.
Learn more about hydrocephalus
Harry’s Hydrocephalus Awareness Trust (Harry’s HAT) has launched a nationwide campaigned called ‘Get-a-head’ to help expectant and new parents learn more about the importance of measuring a baby’s head.
To learn more about hydrocephalus, including how to support affected children and families, visit Harry’s Hydrocephalus Awareness Trust.
