HELENOR Bye would have been 39 now if she had lived: perhaps married with children.
But like all those who die too young, she never had the chance to fulfil her potential.
The inscription on her gravestone describes her as a "victim of the medical profession".
In June 1977, Helenor, then 11, was chosen by her Sunday school to present a bouquet to the Queen. The following month she became unwell and was sent to Bridgend General Hospital to have an IVP - an x-ray examination of the kidneys, urinary tract and bladder, which uses an injected dye.
Her parents noticed an immediate change. On the way home, Helenor was sick. She became confused, ran a high temperature and was hallucinating. She was admitted to hospital, but no diagnosis was made.
Mr and Mrs Bye asked for an EEG to trace the electrical activity in their daughter's brain. By the time the appointment came through, Helenor had been clear of attacks for eight weeks.
Her parents have since discovered that an earlier EEG was carried out, which they say showed Helenor's brain was inflamed - because, they believe, of an allergic reaction to the IVP.
The consultant paediatrician in charge of Helenor's hospital care - who has since died - diagnosed epilepsy and placed her on 800mg a day of an anti-convulsant drug called Epilim, or sodium valproate.
"I questioned him on this, especially on the dose he was prescribing for one of the mildest forms of epilepsy," said Mr Bye, who was then in charge of day care services for people with learning disabilities in West Glamorgan.
"I probably saw more people suffering from epilepsy in a day than he saw in a month. In no way were her reactions those of someone having a seizure. His words were: 'I have ways and means of making sure she has this medicine'."
Fearing their daughter could be taken into care, the Byes reluctantly agreed to the medication.
When they suggested a second opinion, Helenor was referred to a child psychiatrist, who found her to be well-balanced.
After starting the drug, Helenor suffered more confusion, drowsiness, and poor co-ordination. She had difficulty feeding herself and lost weight.
"Her school attendance was still 90 per cent up until a month before she died. She was brought home from school vomiting and couldn't balance. She vomited for six weeks. The medicine we were giving her was killing her," said Mr Bye.
On April 18, Helenor was admitted to hospital as an emergency. Mr and Mrs Bye claim their daughter was abruptly taken off the Epilim.
"All the information that comes with it says you are supposed to wean patients off high doses. From then on, it was a downward spiral," said Mr Bye.
They pleaded for her to be sent to a specialist children's hospital, but were told there were no beds available.
The couple begged a professor at the University Hospital in Cardiff to help. He agreed to admit Helenor as long as her specialist agreed.
By then, it was the weekend. Mr Bye says he contacted the specialist at home. "The comment I had was 'I haven't got the records, it's my weekend off, and I will attend to this matter when I return'."
That Sunday, Helenor started having fits for the first time. She went into one long seizure and sank into a coma. The specialist finally agreed the transfer to Cardiff, where she was admitted to intensive care. She was dehydrated and weighed just over three stone.
After three-and-a-half days, her life support was switched off. Later Mr and Mrs Bye discovered Helenor's organs had been removed without their knowledge.
The inquest two years later concluded that Helenor died of a rare genetic metabolic disorder called hyperammonaemia, but the Byes refused to accept the verdict. They spoke to a world expert in genetic hyperammonaemia and discovered it was impossible for Helenor to have had it.
They found cases where other patients taking sodium valproate had developed the disorder and persuaded the manufacturers to alter the drug's data sheet.
The couple formed a support group to help others searching for answers over the deaths of children.
"We have done a prison sentence for a crime we didn't commit. Every day I go to bed with it and wake up with it," said Mrs Bye.
First published: October 13
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