Maternal instinct says your child's sick but the doctors won't listen. Don't give up. Experts say mothers really DO know best
03:01 GMT, 14 August 2012
Debbie Flowers can recall clearly the moment she started to fear her daughter Bethany’s breathing difficulties were more than ‘just asthma’.
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.
Doctors ignored Bethany's mother pleas. She had a tumour lodged in her windpipe which could have been surgically removed, possibly saving her life
‘But by the next morning, she’d started to sound like Darth Vader so I took her to the GP.’
The doctor said it was asthma and prescribed an inhaler and medication — she also sent the family to A&E 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 from Coventry.
But two days later, with no sign of ‘Darth Vader’ subsiding, Debbie took her daughter back to A&E.
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.’
But Debbie was far from reassured.
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.
Shamefully, the UK has the worst death rates for children with 'amenable' (treatable) diseases compared with other European countries
Braving the disapproving glares of the staff, she took Bethany back to the doctors six more times over the next ten days: twice to the GP and then, as Bethany’s condition deteriorated, calling an ambulance on four occasions to take her directly to hospital.
‘The paramedics would give her a muscle relaxant — and by the time we arrived at the hospital, she’d be breathing normally,’ says Debbie.
‘I begged the doctors to watch when she was walking about — so they could see what happened when she started breathing heavily.
'But they simply didn’t listen to me.’
Instead, they kept repeating the same breathing (oxygen saturation) test, which involved Bethany sitting still for an hour or so with a clip on her finger.
Because she wasn’t moving about, she’d be breathing normally.
‘We’d be left in a room and someone would come in at the end and take off the clip and tell us everything was fine,’ says Debbie.
Indeed, no doctor ordered blood tests or a scan — though her GP did order a chest X-ray, which showed nothing abnormal.
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, according to Dr Roger Malcomson, the paediatric pathologist who gave evidence at the inquest in October 2009, a year after Bethany’s death.
‘I’ve been racked with guilt that I didn’t do more to keep Bethy alive'
Certainly the tumour could have been surgically removed, possibly saving her life, he told the inquest.
But to diagnose it, ‘a doctor would have had to look down the child’s throat with a bronchoscope or order an MRI scan,’ he said.
‘That would have required a high degree of suspicion — a lot to ask of doctors working in a busy hospital department that regularly treats children with asthma and other common breathing problems.’
And yet, ‘in hindsight, the way in which Bethany’s severe symptoms were interrupted by periods of more normal breathing was more in keeping with a tumour periodically blocking her airways’.
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.
Anxious to prevent other such tragedies, two months ago she launched an internet petition with the title Mothers Know Best to persuade the Department of Health to force doctors ‘to listen and take action where necessary on the concerns voiced by parents’.
Perhaps surprisingly, there is considerable professional support — from the Department of Health downwards — for the idea that front-line doctors and nurses must pay closer attention to what parents, and mothers in particular, say about their sick children.
The statistics make grim reading.
Almost half of the 3,000 child deaths in the UK each year are avoidable, according to a study by the London School of Hygiene and Tropical Medicine, published in the BMJ.
One in four of these deaths is caused by identifiable failures in medical care.
Shamefully, the UK had the worst death rates for children with ‘amenable’ (treatable) diseases compared with other European countries.
Parents often say it’s the doctors’ failure to take their concerns seriously that is to blame.
When Joanne Hughes’s daughter, Jasmine, developed worrying symptoms following a viral infection in December 2010, the 20-month-old was sent home from a local hospital three times with the assurance that her condition was not urgent.
‘Instead of getting better, she started to suffer shakes, tremors and became wobbly on her feet,’ says Joanne.
‘My instinct was that Jasmine required urgent investigation by a neurology team.’
In mid-January Jasmine was admitted to a local hospital where Joanne recalls telling a nurse she felt as if she was ‘losing her — she kept zoning out’. Jasmine was then transferred to Great Ormond Street on February 1.
‘But the doctors were undecided about her diagnosis and I was unable to convince them of the urgency of carrying out the diagnostic tests,’ she says.
Jasmine died in February from acute disseminated encephalomyelitis, a post-viral illness affecting the brain.
The need to trust parental instincts may be particularly great in cases of childhood meningitis
‘I’ll never know whether earlier intervention could have saved Jasmine,’ says Joanne.
‘But I’m convinced that doctors can be too quick to judge a child’s health against the normal parameters for their age.
'It’s vital for them to take account of a mother’s knowledge of her child and the danger signs that she alone may recognise.’
Earlier this year, after meeting two other similarly bereaved parents she and her husband, Jeff, from Hitchin, Hertfordshire, set up a charity, Mothers’ Instinct, to support other parents and ensure parental concerns about their children’s health are being listened to.
The need to trust parental instincts may be particularly great in cases of childhood meningitis.
In half of all the cases the child is sent home with the false reassurance their symptoms are ‘nothing serious’, says the charity Meningitis UK, which urges parents to ‘trust their instincts’.
‘We firmly believe parents know their children best and if they are unsatisfied with the service, they should seek a second opinion,’ says chief executive Kate Rowland.
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.
‘Anecdotal 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.
Unfortunately, this instinctive ‘personal expertise’ too often leads mothers into conflict with their doctors, according to Peter Callery, professor of child nursing at Manchester University.
‘Clinicians are trained to look for particular symptoms of ill-health and they can be dismissive of mothers who use non-clinical language to describe their fears,’ says Professor Callery, who has carried out interviews with scores of mothers about their experience with a sick child.
Instead of focusing exclusively on the symptoms of acutely ill children, clinicians should also look for more subtle signs — including ‘taking account of an unusually distressed mother,’ adds Ed Peile, professor of medical education at the University of Warwick.
This is important because of the particular vulnerability of children’s physiology, which means acute illnesses can flare up and become dangerous within hours.
Professor Monica Lakhanpaul, of the Institute of Child Health, London, says: ‘A child’s survival may depend on the question of whether to admit them to hospital or wait and see, and the parent’s testimony on behalf of a child too young to speak for itself can be crucial.’
Last month, a report on the care of acutely ill children warned poor communication between doctors and parents leads to ‘difficulty in the recognition of the severity of illness’ and the current high rate of child mortality in the UK.
‘We know that parents decide not to take around two out of three sick children to the doctors — and that decision is partly led by the underlying social expectation that parents shouldn’t put their doctors to unnecessary trouble,’ says Dr Sarah Neill, senior lecturer in child nursing at the University of Northampton.
Three years ago a unique online tool, Spotting the Sick Child, was developed to support frontline medical, nursing and paramedical staff in identifying children with severe acute illness.
Now academics are working with parents’ groups and health professionals to produce a similar aid, possibly in the form of a mobile phone app, to help parents decide whether their sick child needs to see a doctor.
In another approach being pioneered in Leicester, parents who remain concerned after a consultation with a GP or A&E doctor can ask to see a community nurse.
‘In the past few months, we have picked up several cases of children with meningitis who had been sent home by their doctor — as well as a case of empyema, an abscess on the lung, that fortunately was treated in time,’ says Vicky Wells, clinical lead of the Children’s Rapid Assessment Follow-up Team.
Above all, the scheme promotes a spirit of collaboration between doctors and parents — something Debbie believes will save lives.
‘If my petition can make one doctor listen to a mother’s concerns and carry out further examinations and tests that help save a child’s life, then my beautiful daughter has left the right legacy,’ she says.