We found this on the web:
The ten-year-old was diagnosed with the condition after coming back from a Girl Guide weekend with a wheezing chest. At first Bethany — a ‘happy-go-lucky and healthy child’ — didn’t seem bothered by her symptoms, says Debbie.
The doctor said it was asthma and prescribed an inhaler and medication — she also sent the family to a specialist for Bethany’s breathing to be checked. ‘But the doctors said her breathing was fine, so we went home. ‘I thought “job done”,’ recalls Debbie, a 43-year-old mother of three.
But two days later, with no sign of the wheezing subsiding, Debbie took her daughter back to the doctors. This time, there was less of a welcome. ‘None of the doctors actually said I was a paranoid, over-anxious mother but that was what their faces were saying. They told me stress was causing the asthma to persist. ‘The implication was that if we all just calmed down, Bethany would recover.’
The following day, she watched her daughter as she moved about, her breath rasping loudly. ‘Suddenly the alarm bells were ringing,’ says Debbie. ‘I just knew there was something wrong. Bethany would walk to the bathroom and could hardly breathe. And the difficulty she had was in breathing out — not breathing in, as normally happens with asthma. Sometimes she simply couldn’t empty her lungs.’
It was a crucial observation.
Bethany had a two-centimetre tumour lodged in her windpipe that was periodically blocking her airways as she breathed out.
Debbie believes her instinct as a mother kicked in at that point.
Two weeks after her first symptoms Bethany was finally admitted to hospital for observation as doctors reluctantly agreed the breathing was not typical of asthma. But it was too late. That evening, Bethany suffered respiratory failure, causing her to fall down in the hospital shower. She was taken back to bed in a wheelchair and left to sleep that night. But by the next morning, the doctors started treating her as a medical emergency. It soon became clear the child’s lungs were filling up with carbon dioxide that could not be expelled.
‘She died in an ambulance ten minutes into a journey to another hospital where the plan was to pump out her lungs,’ Debbie recalls quietly. ‘But she didn’t have a chance.’ The movement of being shifted about disturbed the tumour, causing a fatal cardiac arrest.
‘I was holding her hand and the last thing she asked was if she was going to die.’
Whether her life could have been saved is difficult to say.
Debbie is not angered by the failure to spot the rare cancer, however. For her the doctors’ mistake lies in their refusal to take her anxiety seriously and therefore investigate further. ‘I’ve been racked with guilt that I didn’t do more to keep Bethy alive. Perhaps I should have screamed and shouted or got myself arrested — anything to get them to listen to the one person in the world who knows the child inside out and back to front, and knew that something was seriously wrong,’ she says.
‘We firmly believe parents know their children best and if they are unsatisfied with the service, they should seek a second opinion,’ said one of the officers handling the case. What little research there is suggests mothers do indeed know best.
‘Many mothers of very sick babies or children seem to have a sixth sense of danger often without even knowing why they are so worried,’ says Dr Cynthia McVey, a psychologist specialising in child health at Glasgow Caledonian University. ‘Evidence shows very clearly these feelings may be based on subtle, almost imperceptible, changes in the way the child is crying or holding its body or indeed breathing, something that may seem quite trivial or unobservable by the doctor,’ she says.