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'All this could have been avoided' - Norfolk couple speak out after baby daughter diagnosed with life-threatening brain condition

PUBLISHED: 17:12 09 May 2019

Fifteen month old Grace Roberts was diagnosed with water on the brain. Photo: Bethany Wales

Fifteen month old Grace Roberts was diagnosed with water on the brain. Photo: Bethany Wales

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A couple from Norfolk are urging parents to measure babies' heads after their fifteen-month-old daughter was diagnosed with a life-threatening brain condition.

A brain scan showing fluid on fifteen month old Grace Robert's brain. Photo: SubmittedA brain scan showing fluid on fifteen month old Grace Robert's brain. Photo: Submitted

Ann and Dave Roberts, from Wymondham, have spoken out about the issue after their youngest daughter, Grace, was diagnosed with hydrocephalus, or water on the brain.

A key symptom of the condition is an enlarged head and Mr Roberts said he was disturbed that they were not warned of the importance of measuring babies' heads sooner.

The father-of-seven said: "Because it has been diagnosed so late we are dealing with a ticking time bomb. Every time Grace wakes crying we have to check all the normal things like her teeth, feed her or change her nappy but our constant worry is if she has a headache caused by pressure on her brain."

Grace has been referred to the childhood neurology unit at Addenbrooke's hospital in Cambridge but doctors have warned the family her symptoms could become worse within the next two months as the soft spots in her skull close.

Fifteen month old Grace Roberts was diagnosed with fluid on the brain. Photo: SubmittedFifteen month old Grace Roberts was diagnosed with fluid on the brain. Photo: Submitted

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Fluid on the brain causes a range of problems, including learning disabilities, visual problems and impaired speech.

Mr Roberts said: "Its horrible seeing our lovely, bubbly child who is actually advanced for her age at the moment and knowing she could wake up one day completely different. For the sake of buying a fabric tape measure all this could avoided."

NHS procedure is to measure a baby's head every six to eight weeks, but Mr and Mrs Roberts believe more should be done to encourage parents to do so at home, in the same way they are advised to weigh their child.

Mr Roberts shared the story on Facebook and said he was struck by the number of people who got in touch to say they had had similar experiences.

He added: "We were told it was a rare condition but there are many more people affected locally than I expected.

"If our story can help just one parent push for quicker diagnosis and early treatment for their child we will have achieved something."

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