Hydrocephalus in babies: one mum’s story

baby having head measured

by Victoria Glover |
Updated on

Victoria Glover is mum to a 2-year-old boy. Victoria's son needed emergency brain surgery after being diagnosed with Hydrocephalus at 10 months old. This is her story.

Glancing over the paperwork I’d been given by the midwives, I could barely believe that I was a mum… I’d had a baby!

All the way through pregnancy, the thought that I was growing a human inside of me had felt so abstract, but now it was real. There he was filling the little white sleepsuit we’d bought for him all those months ago, with his perfectly chunky arms and plump little legs.

Written in black biro on a piece of card shaped like a teddy bear were my son’s measurements.

Weight: 8lb 8oz
Head Circumference: 38cm

“Head circumference?” I remember thinking, “I’d rather have known his length…”

Looking back, I feel a little bit silly that I had no idea why the size of a baby’s head matters, but actually - there’s hardly anything out there that tells expectant or new parents why we should care.

We all know that weight and height can indicate healthy growth, but how many of us know that head circumference, when taken and plotted on a growth chart over weeks and months, can help to diagnose several serious brain conditions?

I certainly didn’t.

Rapid growth or very slow growth of a baby’s head can indicate a problem that needs further investigation by a specialist. I think if we all understood that - we’d be keener to know that head circumference was being taken and recorded as part of the routine newborn checks and 6-8 week baby check.

What is hydrocephalus?

At 10 months old, my son was diagnosed with a condition called hydrocephalus. It’s also known as ‘water on the brain’ and affects around 1 in 770 babies. If you’re wondering how common that is, it’s about the same number of people that will be affected by Downs Syndrome.

When an infant has hydrocephalus, it means there’s a dangerous build-up of cerebrospinal fluid in the brain which can’t drain away by itself. It causes intracranial pressure in the skull and, if left untreated, it can cause brain damage and be fatal.

Symptoms of hydrocephalus

One of the key symptoms is a rapidly growing head, but it often presents alongside several other symptoms including, but not limited to:

• vomiting
• unsettledness
• sleepiness
• poor feeding
• a shiny scalp with visible veins
• eyes that gaze downwards
•  a regression in the baby’s skills.

With my son, I just had a feeling that his symptoms weren’t pointing to a standard viral infection. Thanks to my dogged determination and despite being knocked back on multiple occasions by health professionals who dismissed my concerns; we were ultimately lucky to get a diagnosis in the nick of time, to avoid any significant brain damage.

Is there a cure for hydrocephalus?

My son underwent four brain surgeries in the space of six weeks.

There is no cure for hydrocephalus, but my son is kept alive by a device called a ‘shunt’ implanted inside his skull. It’s a small tube that drains the excess fluid from his brain and takes it to his abdominal cavity to be reabsorbed. Shunts are amazing, but they can block – and when that happens it usually means another brain surgery to rectify the problem.

I hope my son will be one of the lucky ones who only needs a few revisions in his lifetime, but it’s not uncommon for children with hydrocephalus to endure many more surgeries than they’ve had birthdays. I’m aware of one young man who’s 11 years old and has already undergone 27 brain surgeries.

In my day job, I’m a journalist. And after more than a decade of covering stories that happen in the lives of other people; I’ve now found myself at the centre of a story, working alongside Harry’s Hydrocephalus Awareness Trust on a campaign called GET-A-HEAD.

We want all new parents to know that head circumference is just as important as weight and height, so they have the knowledge to be the best advocates for their babies.

GET-A-HEAD is also calling for improved national guidelines for baby health care across England to end the postcode lottery of support that is currently offered to families.

campaign one page

What do I need to know as a new parent?

Many babies born in the UK have heads that appear large when plotted on the World Health Organisation growth chart inside The Red Book. In fact, the average baby’s head in the UK will sit somewhere between the 75th-91st centiles.

It’s not necessarily about where your baby’s head measurement plots on the graph to begin with, it’s about monitoring head size over time for any sudden jumps up or down on the chart. It’s why it’s so important to make sure the measurement is taken initially by a midwife, so you have a baseline number to work from.

Head measurement should be taken by a health professional and plotted on a growth chart:

• Within 72 hours of birth

• At the 6-8 week check

• Around 6 months old

• Any time there are general concerns about the child’s health, as part of a full assessment

Victoria is a broadcast journalist and charity campaigner. Following her son’s diagnosis of hydrocephalus in 2021, she has been working alongside Harry's Hydrocephalus Awareness Trust to highlight the importance of head circumference measurements for infants.

Just so you know, whilst we may receive a commission or other compensation from the links on this website, we never allow this to influence product selections - read why you should trust us
How we write our articles and reviews
Mother & Baby is dedicated to ensuring our information is always valuable and trustworthy, which is why we only use reputable resources such as the NHS, reviewed medical papers, or the advice of a credible doctor, GP, midwife, psychotherapist, gynaecologist or other medical professionals. Where possible, our articles are medically reviewed or contain expert advice. Our writers are all kept up to date on the latest safety advice for all the products we recommend and follow strict reporting guidelines to ensure our content comes from credible sources. Remember to always consult a medical professional if you have any worries. Our articles are not intended to replace professional advice from your GP or midwife.