Word On Hydrocephalus

Our grateful thanks to the Hydrocephalus Awareness Trust (Harry’s HAT) for their input to our radio report which you can hear again via the audio player at the bottom of this page. To connect though to the charity see their listing on our links page. 

What is hydrocephalus Hydrocephalus is a build-up of cerebrospinal fluid (CSF) in the brain, which increases pressure on brain tissue. CSF normally circulates around the brain and spinal cord, cushioning and nourishing them. Hydrocephalus happens when this system is blocked, overproduced (rare), or not properly absorbed. 

What causes it. There isn’t just one cause. It depends on whether it’s present at birth (congenital) or develops later.

Common causes before or at birth.

• Brain development problems (e.g. related to spina bifida)
• Genetic conditions or mutations
• Infections during pregnancy (e.g. rubella)
• Premature birth → bleeding in the brain
• Causes after birth (acquired)Brain infections like meningitis
• Head injury or bleeding in the brain Brain tumours or cysts 

In many babies, no clear cause is found. 

How it’s diagnosed. During pregnancy:

• Routine ultrasound scans can detect enlarged brain ventricles
• Sometimes MRI is used for more detail

After birth

Doctors may use:

• Measuring head size and growth
• Ultrasound (through the soft spot in babies) CT or MRI scans 

Impact on a baby. This varies hugely - from mild to severe.

Common early signs in babies

• Rapidly increasing head size
• Bulging “soft spot” (fontanelle)
• Vomiting, sleepiness, irritability
• Eyes looking downward (“sunsetting”)

 

Possible longer-term effects. If pressure damages the brain, it can lead to:

• Developmental delay
• Learning disabilities
• Problems with movement and coordination
• Vision issues
• Epilepsy

However, outcomes vary a lot. Some children have significant needs. Others, especially if treated early, can live relatively normal lives

How common is it. Roughly 1–2 in every 1,000 babies are born with hydrocephalus. In the UK, this makes it uncommon but not rare, and it’s one of the more frequent neurological conditions requiring surgery in children.

Can it be prevented? This is the part many expectant parents worry about - honestly, most cases cannot be prevented. But there are some risk-reduction steps:

Things that may help lower risk;

• Taking folic acid before and during early pregnancy - reduces neural tube defects like spina bifida (a major cause)
• Avoiding infections in pregnancy (e.g. vaccination, hygiene)
• Good antenatal care and monitoring
• Managing premature birth risk where possible

Many cases are due to genetics or unpredictable brain development. Even with perfect care, hydrocephalus can still occur

The charity Harry’s Hydrocephalus Awareness Trust (Harry’s HAT) - see our links page -  is campaigning for earlier diagnosis of hydrocephalus mainly through better routine monitoring of babies’ head size and improved national guidelines.

Listen to this weeks radio report