Chorley mother whose son was diagnosed with acute hydrocephalus at 10 months wants to highlight condition to others

Victoria Wall, 31, from Chorley, found herself in this nightmare when her son Sebastian became unwell at 10 months, resulting in him vomiting every day and crying almost constantly. He became incredibly sleepy, and she could barely keep him awake. After a three-week struggle to receive a diagnosis, she was given the news that her son has acute hydrocephalus - a condition also known as ‘water on the brain’ in which excess cerebrospinal fluid (CSF) builds up within the fluid-containing cavities, or ventricles, of the brain.

One of the key indicators of the condition is an unusually large or rapidly growing head, which is one of the reasons why head circumference measurements are taken by midwives and health visitors during routine check-ups in a baby’s first year. As a result of his diagnosis, Sebastian then had to undergo emergency brain surgery four times over the course of six weeks and was fitted with a shunt to drain any access fluid.

Speaking to the Post about her agonising wait for a diagnosis on her son, who is now 20 months, Victoria said: "I always had my suspicions that something wasn’t quite right, as he always had poor balance, but at 10 months he started crying loads and stopped crawling. His symptoms started December 1 last year. I went to see my GP, paediatrician and urgent care but nobody diagnosed it."

Victoria went back to urgent care and demanded something be done to find out what was wrong with her son. He had an MRI scan and was then diagnosed with acute hydrocephalus - a condition Victoria had never heard of at the time, but is now on a mission to education others on. The cause of Sebastian’s hydrocephalus is an arachnoid cyst within his brain which was blocking the flow of CSF.

Victoria added: "Seb was then transferred to Royal Manchester Children’s Hospital where he went on to have four brain surgeries. December 22 was the first, where he had to have the cyst popped. He was let home on the evening of Christmas Day but then had to be readmitted on New Year's Day as the wound was leaking. We were in hospital for another month for various surgeries because of a number of complications."

Asked if this had not been picked up on does she think Sebastian would still be with her, Victoria, who works as a journalist for Hits Radio in Manchester, added: "No. If I wasn't pushing for something to be done, then I think it would have been a tragic outcome. I hope that by sharing my experience helps to push for change. New and expectant parents should be told why head circumference is taken and they should be made aware of Hydrocephalus. If I had known what to look out for; my son wouldn't have become so unwell. If your baby is three to six months old and fitting into their clothes but the same size hats are too small, look at the disparity between the two. Taking a head circumference could mean the difference between life and death.

"At present the shunt manages his condition but they have a high failure rate in the first two years. I have constant anxiety as a parent now. I don't know if he will be fine from one day to the next and if we ever go away, I am always looking up the nearest hospital that does neurosurgery."

Victoria is now involved with Harry’s Hydrocephalus Awareness Trust (Harry’s HAT) which was founded in 2018 to help children and their families who are affected by hydrocephalus. It also raises awareness of paediatric hydrocephalus through workshops and training. The charity is now hoping to raise awareness of the life-long condition with a campaign they're calling 'Get-A-Head' which focuses on why it's so important to measure and document a baby's head circumference during routine medical check-ups by GPs and health visitors, to help identify hydrocephalus at an early stage.

What is hydrocephalus?

Hydrocephalus is a condition where excess fluid builds up inside the skull, putting pressure on the brain. It affects around 1 in every 770 babies and occurs as commonly as Down's Syndrome, and it’s the leading cause of child brain surgery. This can sometimes lead to brain damage, which can be fatal if left untreated.

The excess fluid is cerebrospinal fluid (CSF), a colourless liquid which surrounds the brain and the spinal cord. The normal job of CSF is to act as a ‘shock absorber’ to cushion the brain from bumps as the body moves. It also helps to make sure the brain gets the right amount of nutrients and oxygen, and helps clear waste.

Symptoms and diagnosis

The symptoms of hydrocephalus in children vary depending on how old the child is and how the condition develops.

Babies born with hydrocephalus (congenital hydrocephalus) can have features including:

An unusually large or rapidly growing head.

A tense or bulging fontanelle (the soft spot on the top of a baby’s head).

A thin scalp with visible blood vessels.

Eyes that look downwards.

Vomiting.

Sleepiness.

Poor feeding.

Irritability.

Older children who develop hydrocephalus after birth (acquired hydrocephalus) may have symptoms such as:

Headaches or neck pain.

Nausea (feeling sick) and vomiting.

Sleepiness.

Blurred or double vision.

Difficulty walking.

Treatments.

Hydrocephalus is treated with surgery. There are two types of surgery, and they both aim to reduce the build-up of CSF inside the brain. A shunt is a thin tube which takes excess CSF from inside the brain or spine and transports it to somewhere else in the body. The shunt system has a valve to make sure the CSF doesn’t drain away too quickly. Once the CSF drains to another part of the body it is re-absorbed into the blood.

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