Mum campaigns for better diagnosis of brain condition

Seb's now a thriving, energetic three-and-a-half year old, his mother Victoria says

A mother whose son was born with a potentially life-threatening condition is calling for a better system for diagnosing it.

Lancashire mum Victoria's son has hydrocephalus, which causes water to gather round the brain.

Victoria wants babies' heads to be measured throughout their first year in line with what happens in some other countries, rather than only at birth and several weeks later.

A spokesman for the Department for Health (DfE) said the government takes a "risk-based approach" according to "clinical guidelines".

Victoria's son Seb was born with a cyst on his brain, which was spotted after five days.

But it took 10 months for a further diagnosis of hydrocephalus.

She said: "I had a niggling feeling that something wasn’t quite right.

"He did sit up at six months old but he was always toppling over… he was always a very unsettled baby."

Victoria said she raised her concerns numerous times with local health professionals but was told that everything was fine.

Then, at nine months, Seb started vomiting daily and stopped crawling.

He had a scan at the Royal Preston Hospital, where hydrocephalus was diagnosed.

"I had no idea what [hydrocephalus] was. I’d never heard of it.

"All I knew on leaving that room was that in the next few hours we were going to be transferred to the Royal Manchester [Children’s Hospital] and he was going to have to have emergency brain surgery."

Seb had four operations in quick succession, and had a shunt - a small tube - put in his brain to drain away the fluid.

He’s now a thriving, energetic three-and-a-half year old.

Victoria has taken a leading role in the national Get-a-Head campaign run by the Harry’s HAT (Hydrocephalus Awareness Trust) charity.

It is asking the government to consider introducing a schedule of head measuring for the full first year of life.

Paediatric neurosurgeon Deborah Ferguson

The technique is particularly effective for babies as their skulls are pliable and more likely to increase in size as the brain swells.

"If you’re looking at countries like Finland, they are measuring 10 or 11 times in that first year of life," said the charity's chief executive Caroline Coates.

“We want the current government to commission a review of the current guidelines to see if we’re measuring enough."

The charity also wants to raise awareness among parents of the importance of head measurements.

A survey they carried out revealed that only 20% of parents understood what the measurements were really for.

A campaign petition has already gathered nearly 23,000 signatures and an open letter to the government has been signed by paediatric neurosurgeons from every specialist centre in the country.

Seb and his mum have continued to make regular journeys over from Chorley for his care at the Royal Manchester Children’s Hospital.

Paediatric neurosurgeon Deborah Ferguson said the benefits of early diagnosis were obvious.

"It allows the pressure on the brain to be relieved, it allows us to be aware that this has happened to the child, and it allows us to put more steps in their treatment going forward," she said.

'Absolute joy'

She added that there was ample opportunity during existing scheduled health checks for the head to be measured during the first year "by the health visitor, by the community health team, by the GP or by hospital teams if they come into the hospital".

A DfE spokesman said: "This government is committed to ensuring all babies and their parents receive the care they need.

"The UK takes a risk-based approach to screening for Hydrocephalus in babies, according to agreed clinical guidelines."

While the family is there Deborah runs through a series of tests with Seb, who enthusiastically demonstrates his skills in balance and dexterity, chatting excitedly throughout.

"He’s an absolute joy," said Victoria.

"He really does light up my life every single day. He’s so witty, he’s funny, he’s chatty.

"I’m so grateful for how he is because it could have been so much different."