COMMENT: For Love of Helenor

Does a doctor know more about a child’s wellbeing than her mother? Can an occasional examination allow him to see things that a mother can’t? Does the doctor always know best?

Most of you will probably give a categoric no to these questions. But that’s just the way things are done in medicine; the parent is relegated to a secondary role, forced to carry out the doctor’s bidding.

I speak from the heart about these matters because 16 years ago my beautiful only daughter Helenor died after being treated for epilepsy. She was just 12, and she was a happy and vivacious girl. Only a month before the treatment started, she had been chosen to present the Queen with a bouquet of flowers at her Methodist Sunday school.

My sadness is also a rage, but not against the unknowable fates that decide who should live and who should die. It is against medicine, especially the condescending, secretive and patronizing kind that tells you nothing, even after the death of a child, and shows no compassion.

You see, I am sure Helenor died unnecessarily. She was being treated with Epilim for a condition I am convinced she never had. She had gone into a semi-coma minutes after having a test to check her nervous system, and I am sure this was triggered by the dye they injected in her spine.

Nonetheless, the doctors were sure she had epilepsy and they put her on a course of 800mg of Epilim a day. Within months she started wasting away before my eyes. She was getting thinner and started hallucinating. Eventually her hair started to fall out. The doctor was convinced she was emotionally disturbed, and that she was enjoying the attention.

Her condition continued to deteriorate until she was just half of her normal body weight. Still, the doctor thought she was just playing up as a spoilt child, twisting round her fingers two doting parents. He even shouted at her several times to pull herself together. I doubt she had the strength.

After eight months, she became delirious and was rushed to hospital. Before she passed into a coma, she said: “Mummy, why don’t they listen to you? Why don’t they believe me?” She died a few days later weighing just three stone. She had to die to prove to them she was ill.

The indifference toward her life turned into a bureaucratic web after her death. For two years, I fought for an inquest, and there was even an adjournment debate in the House of Commons about the delay. In the end, an inquest was held. It concluded that Helenor died from hyperanemia, a rare genetic brain disorder. They said there were no signs of epilepsy. While we agreed with that, we did not accept the verdict, and have never received a death certificate.

Nevertheless afterward, the Committee on Safety of Medicines strengthened the adverse reaction sheet for Epilim which had previously been thought to be a completely safe drug.

Our case also brought a reply from Professor David Coulter of the Department of Pediatrics at the University of Texas who was scathing about the way drugs are introduced and monitored in the UK. The drug was introduced much later in the US after more extensive trials.

For a long time, we were in the media spotlight. The New Statesman covered the story; the Sunday Times and the Daily Mirror made Helenor’s death and our campaign front page news. As a result, the Committee on Safety of Medicines reported that Epilim may have been linked to the death of 19 people, although their figures have never included Helenor.

But my fight is not really against Epilim. I know many regard it as a wonder drug, and that it has helped many children live a normal life. It was given inappropriately to Helenor, and by a doctor who did not understand the side effects. But, it seems, few did.

My real fight is against the type of medical care Helenor and I encountered. Something in me died when Helenor passed away on 27 April 1978; something else decided to fight.

In the early 1980s, I created Parent Recognition of Pediatric Errors (PROPES). We have helped many parents who have also suffered this terrible loss, but we want to do more. I maintain that fewer children would die under medication if their parents were allowed a more active role, to work closely and as equal partners with the doctor. This is what PROPES is campaigning for.

The opinion of parents must be sought and taken seriously, and not just viewed as neurotic or over anxious. Our instincts about our children’s condition are invaluable.

As soon as a parent suspects all is not going well, he or she should have the right to a second opinion. The wall of secrecy must come down. All medical notes should be made available to families. If there is nothing to hide, why hide it?

When a mistake is made, and a family suffers the almost unbearable loss of their child, at least the system should swing into action to ensure it is not repeated. Instead, reputations come before the life of a little child. Filing cabinets are locked, and lips are sealed. We want greater openness in the management of pediatric services, and parents should have access to all postmortem papers.

I know this is a special issue of WDDTY. I fully support its campaign for greater openness in medicine. If, between us all, we can achieve that, then Helenor and hundreds of others like her have not died in vain. And parents like me can grieve in peace.

!AJoan Bye