Western Daily Press (Saturday)
Parents call for better vitamin A testing after Bella loses eyesight
PARENTS have demanded better testing after their autistic daughter who would only eat certain foods like Marmite sandwiches lost her sight.
Bella Mildon, 12, suffered her loss of vision after routine blood tests failed to pick up a vitamin A deficiency.
Her parents Sam and David have been campaigning to prevent the same happening to other children.
Bella has the mental age of a oneyear-old and like many children with autism will only eat certain foods – she eats Marmite sandwiches, crisps and drinks water.
Bella, from North Somerset, collapsed back in January and spent days in hospital – but when she woke up she was blind.
Her parents say they want more rigorous testing carried out so no other child faces the same fate. They are calling for more comprehensive testing for all autistic children who suffer from dietary restrictions.
Advisory body NICE is reviewing its guidance about handling nutritional deficits among children with autism.
Sam, 53, said: “What’s tough is her vision was her way of communicating. She has no communication and we’re now just starting from scratch.
“It should never have happened. Even if they’d done the blood test a week before she wouldn’t have gone blind.”
The regulatory body of the NHS is looking into Bella’s case – and to determine whether autistic children should be tested more to check for any vitamin deficiencies.
“They’re going to review the situation because of Bella’s case and we’re over the moon,” Sam said.
“What can we do to turn this into a positive situation? The only thing we can do is change the law for guidance.”
Bella’s parents, both full-time carers for their girl, became worried about her eyesight when she began knocking into objects on the weekend
It should never have happened – even the neurologist and everybody said this was preventable had she had these blood tests earlier SAM MILDON
of January 23 and took her into hospital several times the following week.
“We knew something was going on so we went in on the Saturday. We then went in again on the Monday and again on the Wednesday and Thursday, and not one blood test was done in that time,” Sam told the BBC.
Bella collapsed in her bedroom on January 31 and was given CPR by her father before being taken to hospital where she spent four days in intensive care.
Sam said: “He found her not breathing, completely limp with her mouth open and eyes rolled back in her head.
“When she woke up her eyes weren’t working properly and they told us that she had probably lost her vision. We finally brought her home but we brought a different Bella home, one that can’t see.”
Sam said she spoke to the hospital’s head of neurology to ask whether there was anything that could be done to help prevent other children from losing their sight.
“It should never have happened – even the neurologist and everybody said this was preventable had she had these blood tests earlier.
“She’s been on a restricted diet since she was five and in any of these years if she had this blood test – they would have seen these vitamin levels are depleted and done something about it.”
Sam said although they are heartbroken about Bella, they vowed to ensure no other child faces the same fate.
She said: “Bella collapsed and was in the hospital – when she woke up, she was blind. We vowed at the time – six weeks ago – we have to stop this happening to another child
“Autistic children often have eating disorders and restrictions.
“Our daughter is blind, and it appears irreversible. Currently there are no guidelines for children with restricted diets to have regular vitamin A tests.
“If this had been the case, our daughter would not now be blind.”
NICE has announced it is intending to investigate Bella’s case – hopefully with a view to introducing regular blood tests to detect low vitamin levels among autistic children.
Paul Chrisp, director of the NICE centre for guidelines, said: “We are currently consulting clinical experts during a review into our guideline on the support and management of under-19s with autism spectrum disorders.
“We have asked these experts about the issue of nutritional deficiency and restricted diets as part of this review and expect to share more information in the coming months once our initial consultation is completed.”
Medical director at University Hospitals Bristol and Weston NHS Foundation Trust, Dr William Oldfield, confirmed to the BBC that the hospital was continuing to provide “care and treatment” for Bella.
“Wider research is needed to better understand which patient groups are more at risk of developing nutritional deficiencies caused by a restrictive diet, to further inform treatment and support as appropriate,” he added.