Doctors scanned toddler to 'put mum's mind at ease' before potentially fatal diagnosis

A mother is raising awareness after her son needed urgent surgery for a potentially fatal build up of "water in the brain."

Victoria Wall, 32, from Chorley, Lancashire, said she struggled to get doctors to take her concerns about son Sebastian seriously.

He was eventually diagnosed with hydrocephalus and need four operations.

Sebastian with his mum Victoria Wall who wants to raise awareness of the "GET A HEAD' campaign Credit: MEN Media

Victoria is now part of a GET-A-HEAD campaign, which was launched by the Harry’s Hydrocephalus Awareness Trust charity to highlight the importance of head circumference measurements in a child's first year.

When Seb was born, in 2021, he was so distressed after birth doctors placed him onto a ventilator straight away.

An ultrasound scan at five-days-old revealed he had a cyst on his brain.

Though his mum was alarmed, she was reassured the growth was nothing to worry about.

She did not realise that a baby's head size was important, and when she was given the measurement she disregarded it.

But, at six-months-old, Sebastian could not sit up properly and was not reaching his milestones, and by nine-months-old he suddenly became severely distressed and would not stop crying.

Victoria said: “I knew something was wrong."Victoria and her husband, Alex, took Seb to see a paediatrician and was told he had an infection.

They were given antibiotics, which Seb responded to at first, but they stopped working two days later.

As his distress continued, Victoria took Seb to an urgent care centre but was told the youngster was not unwell.Determined to help her son, the mum did not give up and took Seb to see a GP - but was once again told there was nothing wrong.

More than two weeks after his first symptoms Victoria returned to the urgent care centre where medics finally agreed to admit Seb to hospital.Victoria said: "They then did blood tests and couldn’t see anything wrong. I told them I wasn’t going home until they had done a scan on his head because I knew he had this cyst."They were trying to tell me it was a prolonged reaction to a viral infection but they would do a scan to put my mind at ease.

"And lo and behold – he had hydrocephalus."

Sebastian after brain surgery after his mum insisted something was wrong Credit: MEN Media

Hydrocephalus, also called “water on the brain”, is a build-up of fluid on the brain that can cause pressure and subsequent damage to the skull.One key symptom is a rapidly growing head, but it often presents alongside several other symptoms including vomiting, unsettledness, sleepiness, poor feeding, a shiny scalp with visible veins, eyes that gaze downwards and a regression in the baby’s skills.If the pressure is not relieved, it can interfere with normal brain growth and development and lead to permanent damage in the brain and can be fatal.

Thankfully, the condition was caught before Seb suffered any significant brain damage.

Victoria said: “I was being given a diagnosis that I didn’t understand. I remember ringing my mum after to tell her, and I couldn’t even pronounce it.“I’m really well researched and I thought I’d worried about everything, but evidently not.

"Reading that it’s incurable and it’s a lifelong thing – it's so much to take in."Seb was rushed for emergency brain surgery the following day - the first of four operations in just a six-week period.

Sebastian needed four operations and has a 'shunt' in his skull to keep him alive Credit: MEN Media

He is now being kept alive by a shunt implanted inside his skull - a small tube that drains the excess fluid from his brain and takes it to his abdominal cavity to be reabsorbed.

But, Seb, who is currently receiving treatment in Manchester, faces the real possibility his shunt could block at any time, meaning another brain surgery to rectify the problem.Victoria said: “It’s been genuinely horrendous. And not what you expect when you set out on your journey to become a parent."It’s the exact opposite. It was really traumatic having to watch him be ill at the start and then go through the process of being ignored and knowing you were right all along."Watching him go through all the surgeries was horrible. After them, you think he will be okay, but he’s not really because he will always have this anxiety that he will need brain surgery again and that’s hard to deal with.

"It’s isolating because your mum friends don’t really get it. Whenever he has a cold or something, I think, is it just a cold? Or has his shunt failed?"It’s the worst anxiety. I can’t even explain it."

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