10th July 2026
In support of Global Get-A-Head Day, we are delighted to share this Voices blog by Victoria Glover from Harry’s Hydrocephalus Awareness Trust (Harry’s HAT).
We’re a small, user-led charity supporting children affected by hydrocephalus and their families. I’m also the mother of a vibrant, chatty five-year-old boy who was diagnosed with hydrocephalus at ten months old. He’s the inspiration behind everything I do.
What is hydrocephalus?
Hydrocephalus is characterised by an abnormal build-up of fluid in the ventricles of the brain. One of the earliest, and sometimes the only sign of the condition in babies, is a rapidly growing or unusually large head.
Although hydrocephalus is a life-long condition with no cure, in many cases disability is preventable when the condition is picked up early and treated quickly.
Why is the awareness around hydrocephalus so low?
This is a question I ask myself often. Perhaps it’s because hydrocephalus is a secondary condition, caused by something else. Or perhaps it’s because society is concerned about raising parental anxiety.
But coming at this from a mother’s perspective (with the benefit of hindsight), I believe knowledge is power.
The incidence rate of hydrocephalus is almost identical to that of Downs Syndrome, and that comparison is one I constantly come back to. When I look back on my own pregnancy journey, those conversations about Downs Syndrome stuck with me. I was aware of the risks and tests and had a general understanding of what that diagnosis would mean.
It wasn’t until my son was 10 months old, after three weeks of acute symptoms and regular back and forth to medical settings, that I heard the word hydrocephalus for the first time.
I was sitting in a room with a doctor, receiving a devastating diagnosis for my baby, and I had no idea what it meant. That same doctor had told me only hours before that my son probably had a lingering virus, and the only reason he was agreeing to an MRI brain scan was to ‘put my mind at ease’.
The reality is that my son’s head circumference was measured at the recommended intervals, but with no explanation. A check was carried out, and I had no idea why. I naively assumed it was simply a nice metric for his Red Book.
I often wonder whether our journey would have been different, had head circumference been explained as a very basic indicator of brain health. Maybe it could have prompted me to join the dots and act sooner?
Earlier awareness may have changed everything.
That experience has lit a fire inside me to ensure no other baby endures the onset of symptoms that my son experienced in those weeks when his intracranial pressure reached a dangerous level.
Here’s a list of symptoms specific to his presentation:
- Large head which appeared to bulge near his temples
- Vomiting – most often after waking
- Constant crying – almost impossible to settle
- Extreme lethargy – wake windows reduced significantly, and he was never satisfied by a nap
- Wanting to be positioned upright for sleep
- Reduced mobility/regression in skills – he lost the ability to crawl and no longer wriggled when I changed his nappy
- Unable to hold a seated position for more than a few seconds before falling over
- Rocking back and forth in his highchair
- Extreme distress when placed onto his stomach for tummy time
These symptoms disappeared after successful treatment and he now lives with a VP shunt, which quietly keeps his brain happy as he goes about his days.
Being a parent to a child with hydrocephalus is an anxious existence; we’re never sure if or when his shunt may fail but, with time, we have learned to enjoy periods of stability and are incredibly proud of his resilience.
The Get-A-Head Campaign
Our Get-A-Head campaign’s core mission is to highlight the importance of head circumference measurement as a basic indicator of brain health, and to influence UK clinical guidelines so that babies receive more regular routine monitoring in their first year.
UK guidelines currently recommend two routine measurements, which should be plotted in the baby’s Red Book:
- At birth
- At the 6–8 week GP check
Through our campaign research, we’ve identified the average age of onset for rapid head growth is 4.8 months. This suggests that introducing at least one additional routine check at around 16 weeks could catch most cases, significantly reducing late diagnoses – a minimum already recommended in many other countries.
10 July 2026: Global Get-A-Head Day
Each year we mark a global awareness day in July to highlight the disparities in routine head circumference monitoring across the developed world.
The theme of this year’s Global Get-A-Head Day is to ‘level the playing field’ for child brain health, inspired by World Cup fever. Please feel free to share our graphics.
Our progress to date
How can you support us?
Health visitors play a vital role in a baby’s early months. You are often the eyes on the ground, visiting family homes and noticing changes that even parents may not recognise.
We know there is significant variation in practice across the UK, with some health visitors in England telling us they are no longer commissioned to measure head circumference – despite assessment of ‘child growth’ forming a key element of a holistic assessment in all UK health visiting policy.
We ask that if you, or a parent/carer, ever has concerns about a baby’s presentation, please measure and plot the head circumference as part of a full assessment.
We are aware that in some cases, an “unsettled baby” may in fact be a baby with hydrocephalus. Through our work with families, we have seen instances where the initial diagnosis was reflux, due to the overlap in clinical presentation. Persistent vomiting, irritability, a high‑pitched cry, and changes in behaviour may indicate an alternative underlying cause.
For that reason, we would encourage a position of gentle curiosity. Where symptoms don’t quite add up, or where a baby is not responding as expected to initial management, considering head growth and brain health can be a vital step.
Professor David Walker from the University of Nottingham framed this issue powerfully: every child should be able to expect that their brain health matters to their parents, to society, and to the professionals caring for them.
At Harry’s Hat, we will continue to play our part and call for a full review of UK clinical guidelines on head circumference monitoring.
Let’s level the playing field together.
Find out more here: Global Get-A-Head Day – Harry’s Hat
Victoria Glover, Campaign and Engagement Lead, Harry’s Hydrocephalus Awareness Trust
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