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'We miss Dylan every day and don't want his death to have been in vain'.

Byline: MARTIN SHIPTON Chief Reporter martin.shipton@walesonline.co.uk

TRAGIC dad Michael O'Brien has written a book about his son Dylan, who died aged two after a genetic disorder went unrecognised by doctors.

His book - A Father's Journey - tells the moving story of Dylan's short life, but also offers advice to parents about how to recognise genetic disorders.

Cardiff and Vale University Health Board accepted liability for the death of Dylan, who waited more than nine months for a key medical assessment.

He was waiting for an assessment by a genetics team and for an important operation when he died in June 2012.

The operation to remove his tonsils and adenoids was cancelled for the second time by the hospital just a day before he died.

While still grieving Dylan's death, his parents Michael and Claire quickly began asking questions about his care.

Staff at the University Hospital of Wales, Cardiff, where he had been pronounced dead, launched a review. The hospital admitted liability and agreed an undisclosed financial settlement with the O'Briens. The family had concerns about Dylan's health from the start. He would choke on his bottle and he showed the physical signs of facial dysmorphia.

Claire, who has three older children from a previous relationship, knew there was something wrong with his physical progression.

"Developmentally he was different," she said. "He didn't crawl until he was 21 months."

In September 2011, a paediatrician said he was referring Dylan for assessment by a specialist genetics team but, after six months, the family had heard nothing.

When they contacted the hospital, they were told a "copy of the actual genetics referral letter is not available". They were promised "an appointment for Dylan at their earliest convenience".

But when the two-year-old died nine months later he was still waiting for that appointment. The hospital now accepts that "on the balance of probabilities responsibility for Dylan's death" arises from "failures to arrange" for him to have his adenoids and tonsils removed "more promptly".

In a letter to the family, it "accepted that Dylan may have made a full and complete recovery" from this procedure if it had been undertaken earlier.

The health board said it "deeply regrets its failures" and their "tragic outcome".

The Dylan O'Brien Foundation was set up by his parents in his memory to raise awareness and support for children with metabolic and genetic diseases and their families.

Mr O'Brien said: "I have written this book in the hope it will raise awareness of rare metabolic and genetic diseases and to help families going through similar issues.

"It is important that the early signs of these life threatening diseases are identified so treatment can be given.

"I really hope this book will also bring about some much needed change and awareness of these diseases within the medical profession including doctors, nurses, midwives and other health professionals.

"We miss Dylan every single day and we don't want his death to be in vain."

Mr O'Brien is one of the Cardiff Newsagent Three who spent 11 years in prison for a murder they did not commit. Newsagent Phillip Saunders died in 1987 after being attacked in the back yard of his Cardiff home.

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Michael O' Brien has written a book about his son Dylan, who died aged two ROB BROWNE
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Publication:South Wales Echo (Cardiff, Wales)
Geographic Code:4EUUK
Date:Jun 16, 2016
Words:553
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