South East Wales

Parents' plea for tests after Barry baby dies on plane

Sofia Jasmine Williams
Image caption Sofia Jasmine Williams died on a flight home from the Canary Islands in 2009

The parents of a baby who died from an undetected illness have called for widespread screening of the disease she suffered from.

Eight-month-old Sofia Jasmine Williams fell fatally ill on a flight from the Canary Islands in September 2009.

Her parents David, 42, and Nicola, 24, from Barry, want all newborn babies in Wales screened.

The assembly government said it plans to introduce tests for medium chain acyl dehydrogenase deficiency (MCADD).

Sofia's parents only learnt she had the rare inherited condition after her death.

They also discovered they and their other daughter Ellie-May, five, are carriers of the condition.

They told an inquest in Bristol more awareness about the disease could have helped them save their daughter's life.

Pathologist Craig Platt of Bristol Royal Infirmary gave Sofia's cause of death as sudden death of an infant.

He said Sofia was under stress from a virus which was a "significant factor", but not the cause of her death.

During the inquest Mr and Mrs Williams urged the assembly government to introduce testing so the disease could be detected as early as possible.

During evidence, Mr Williams, a special needs carer, said screening for MCADD was not available in Wales for new babies when Sofia was born.

"We want to try and get awareness now that this testing should be done in Wales," he said.

"On the plane we could have done something if we had known she was that ill."

An assembly government spokesperson said: "Work is under way to introduce screening tests for MCADD and sickle cell disorders by 2011."

The inquest was told the Williams family was returning from a two-week holiday in Fuerteventura when the tragedy happened.

'Not breathing'

In a statement read to the court, Mrs Williams said Sofia appeared to fall ill the night before they were due to fly back.

During the flight to Bristol Airport on 9 September last year she sat on her mother's lap.

"She had a few sips of fluid on the plane but was really floppy," Mrs Williams said.

She described how Sofia cuddled up to her, but then her bottom lip dropped and her eyes rolled back.

"I looked down and she was not breathing and I got really scared," she said.

"On the tarmac a paramedic asked me if she had been ill at all. I told him she had a tummy bug and he told me it didn't look good, referring to Sofia."

Following the inquest Mrs Williams said she wanted more people to know about the condition "not to make people look bad, it's just to let people know how deadly it is".

"I would not wish it on anybody to lose your child, especially when you don't know the reason why," she added.

Acting Avon coroner Maria Voisin gave a verdict of death by natural causes.

She will now consider whether to write to Wales' Health Minister, Edwina Hart, about the inquest.

MCADD affects between one in 10,000 and one in 20,000 babies born in the UK each year.

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