Hydrocephalus Awareness Week: Pressure from fluid accumulating in the brain is rare but potentially deadly if left untreated – Dr Gwenetta Curry

A build-up of fluid in the brain can cause lasting damage

Fatima Khatun 25, kisses the head of her 18-month-old daughter, Roona, who is suffering from hydrocephalus, in their home in Jirania, a village near Agartala, India (Picture: Arindam Dey/AFP via Getty Images)

Did you know that this week is Hydrocephalus Awareness Week? Although many people may not be familiar with this condition, there are individuals in our population who are living with it. Hydrocephalus affects about 85 in every 100,000 people globally, with a notable distinction between age groups.

Among child populations, it is found in 88 out of every 100,000 individuals, while in adults, the incidence is only 11 in every 100,000. Although there is a higher prevalence of hydrocephalus in Africa and Asia, as many as one in every 750 children in the UK have some form of this brain condition. While it is rare, it is crucial to note that leaving it untreated can be life-threatening.

“Every day the brain produces about a pint of cerebral spinal fluid (CSF) which flows in a continuous circuit through the brain cavities (ventricles) and over the surface of the brain and spinal cord until it is absorbed by the body,” explains Spina Bifida Hydrocephalus Scotland. "If the flow of the CSF is blocked at any point, the fluid cannot drain away and will collect in the ventricles inside the brain.” Hydrocephalus is the build-up of this fluid which puts pressure on the brain and can damage its development.

Headaches, vomiting, impaired vision

During the early stages of development, the heads of babies and infants undergo enlargement due to the swelling of ventricles that expand the brain's size. However, in older children and adults, the growth of the head is limited since the bones forming the skull are fused.

Get our weekly opinion newsletter for expert analysis from The Scotsman’s team of columnists

Individuals suffering from hydrocephalus typically experience symptoms such as headaches, vomiting, impaired vision, and difficulty walking. There are three types of the condition: congenital, which is present at birth; acquired, which develops after birth; and normal-pressure hydrocephalus, which is only prevalent in older adults.

Congenital hydrocephalus can be caused by conditions such as spina bifida or an infection the mother develops during pregnancy. Many babies born with hydrocephalus have permanent brain damage. The potential long-term complications consist of learning disabilities, speech problems, memory problems, short attention span, problems with organisational skills, vision problems, problems with physical coordination, and epilepsy. Normal-pressure hydrocephalus is rare but most often affects people over the age of 60 and can occur after an injury or stroke.

Treatment can prevent deterioration

Hydrocephalus is diagnosed using brain scans, such as CT and MRI, to show the build-up of fluid in the ventricles. One of the most frequently used treatments is the installation of a shunting device, which helps regulate pressure by removing any excess fluid and thereby preventing further deterioration.

While the shunt effectively alleviates symptoms caused by heightened pressure, it doesn't address other issues related to brain damage. As research progresses, we can hope to discover alternative treatment options for those affected by this condition.

On Thursday this week, there will be an Hydrocephalus Awareness event at Portobello Town Hall called Portobello Loves Circus and Hats for Hydrocephalus. It will feature talented circus artists, musicians, and performers, and raise funds for hydrocephalus.

Dr Gwenetta Curry is a reader in race, ethnicity, and health at the University of Edinburgh