Would these children still be alive if doctors had listened to their mothers' instinct? Three parents tell their heartbreaking stories Three mothers have set up the charity Mother's Instinct supporting parents in getting their voices heard after their own children died 20-month-old Jasmine Hughes died after she was given 'fragmented care' Harry Connolly died of dehydration and acute kidney failure Twin Harry Mould died aged five from following a chest infection Their mothers said parents are the experts on their own children By Helen Garston Joanne Hughes remembers her toddler Jasmine as a bright-eyed, funny little girl. Her days were filled with trips to the swimming pool, and afternoons were spent curled up in her mother's lap, reading favourite stories, in the 20 months they had together. When Jasmine contracted what Joanne assumed was just a childhood sniffle, she wasn't unduly worried at first. Within weeks, however, Jasmine had suffered catastrophic brain damage and was dead, leaving Joanne and her husband Jeff bereft. Bright-eyed and funny: Jasmine Hughes, pictured aged 20 months, died of acute disseminated encephalomyelitis and an inquest into her death ruled her care had been 'fragmented' What makes their grief harder is the belief that had doctors listened to Joanne's instinct that something was seriously wrong, Jasmine might still be alive today. "Over the month that Jasmine was ill we saw countless doctors, but only two listened to me properly," says Joanne, 33. If more had, I believe Jasmine could still be here now. Sadly it's an all-too-familiar lament, heard only this week by the parents of seven-week-old Axel Peanberg King, who died of pneumonia after being sent home from hospital several times by doctors. Axel's mother, Linda, broke down at the coroner's court as she described how her son went into cardiac arrest as she queued at a privately run out-of-hours GP centre at London's Whittington Hospital last October. She and her husband, Alistair, described how they'd visited the centre several times with their son. Linda's "gut feeling started taking over" - but Axel's illness was dismissed as a viral infection. Tragic: Harry Connolly, left, pictured aged 19 months, died from dehydration and acute kidney failure and Harry Mould, right, died aged five from a chest infection and an inquest found 'gross failures' contributed to his death Just a few months ago, the standard of care given to a 13-month-old boy who died of meningitis was described as "disgraceful" by a judge at Sheffield County Court. Bobby Bushell died after his mother's fears were dismissed as "hysterical" by staff at Doncaster Royal Infirmary in August 2007. The family's plight was detailed at Sheffield County Court last November, when they won a five-year legal battle against Doncaster and Bassetlaw Hospitals NHS Foundation Trust and received a five-figure payout. Late last year, another inquest heard how ten-month-old Hayley Fullerton died of a heart attack at Birmingham's Children's Hospital. She'd had an operation to correct a hole in her heart but staff inserted a tube incorrectly, causing her lung to collapse. At one point her mother, Paula Stephenson, was so desperately convinced of her daughter's deteriorating health that she offered a nurse a £100 bribe to help, to no avail. Three children who died needlessly. Three grieving, angry mothers who wish they'd just been listened to. Stories like these sadden Joanne and Jeff, a 41-year-old IT director, but do not surprise them. Following Jasmine's death last year, the couple attended a bereavement group where they met grieving parents who'd suffered similar, terrible experiences, believing maternal instinct had been dismissed as fussy parenting. This prompted the couple, from Hitchin in Hertfordshire, to set up the charity Mother's Instinct, which supports parents and aims to ensure concerns about their children's health are being listened to. Devastated: Odette Mould, left, holding a picture of son Harry, and Joanna Hughes, holding a picture of baby Jasmine, have set up the charity Mother's Instinct, supporting parents in getting their concerns listened to Lucy Connolly, holding a picture of baby Harry, also founded the charity But what is mother's instinct? Is it allegorical or fact? More importantly, how do health professionals differentiate between an over-anxious parent in an overstretched Accident and Emergency department and the valid concerns of those who know their children best? Dr Ann Van den Bruel, a GP and lecturer in clinical studies at the University of Oxford, co-authored a study on parents" instincts in 2010 in The Lancet medical journal. She summarises "instinct" as a combination of a parent's natural desire to protect their child and an intimate knowledge of their character and past. She says: "When a GP asks a parent what they think, that answer should have diagnostic value. Because a parent will have had a lot of experience at seeing their children with illnesses like coughs and colds, if they raise serious concerns in a consultation, that should ring alarm bells. I don't know if I would define this as a parent's instinct - it comes more from experience. This parental input becomes very important in detecting serious illnesses like meningitis, when early symptoms are similar to minor illnesses and easy to miss. Joanne and Jeff's nightmare began just before Christmas 2010, when their daughter developed a fever. "The GP reassured me that it was a virus and said to continue to give her Calpol," says Joanne, who used to work in medical sales. A few days later Jasmine's temperature was back to normal, but she seemed tired. By January 13, Jasmine had developed a squint. Joanne took her back to the GP, who immediately referred her to Stevenage's Lister Hospital. Jasmine was examined, but it was decided she didn't need an urgent scan, so an MRI was booked for six days later, and Jasmine was sent home. Axel Peanberg King died from pneumonia despite his mother consulting doctors three times The scan results, when they eventually arrived, were frightening. Either Jasmine had leukodystrophy, a rare terminal condition, or acute disseminated encephalomyelitis (ADEM), a post-viral condition which, her parents were told, could be treated. Understandably, Joanne was terrified: "I was scared but we were told it was more likely to be a post-viral condition and that Jasmine would be put on medication. The doctors would do a lumbar puncture, where a sample of spinal fluid is taken, to find out more. Jasmine was all ready for the tests, but then the doctor called Great Ormond Street [GOSH] for a second opinion, and staff there wanted to see Jasmine's medical history and MRI scans first. It has destroyed me. I feel that if I'd been listened to, Jasmine would have had steroids far earlier and could still be with us now. Joanne Hughes Staff at the Lister Hospital told Joanne and Jeff that GOSH felt it was more likely to be leukodystrophy: they said Jasmine should go home and wait for an appointment at Great Ormond Street. Worryingly, the earliest available appointment was January 31. Joanne says: "I went to the Lister, practically begging them to do the tests there and then. By then, Jasmine was increasingly sleepy, and was wobbling when she walked. We needed answers. None were forthcoming, and four days later, their family GP called Great Ormond Street and was told Jasmine needed steroids - the usual treatment for Acute Disseminated Encephalomyelitis. But it was too late. Despite starting on medication that night, Jasmine started having seizures and was transferred to Great Ormond Street, where an emergency scan showed brain swelling. On February 15, Jasmine died in Joanne's arms. A post-mortem found that Jasmine had died of acute disseminated encephalomyelitis and an inquest concluded that her care had been "fragmented," but the coroner ruled that it was "not possible to say if an earlier assessment or treatment would have altered the outcome." Seven-week old Axel was treated at the Harmoni centre at Whittington Hospital, pictured, before he died After the case, Dr Andrew Raffles, a consultant paediatrician at the Lister Hospital, said Jasmine's was a "very sad case." "As a result of finding one or two areas where we could have done better in Jasmine's care, we have analysed these and are putting change in process," he said. I kept thinking something wasn't right. But what do I know? But I was Harry's mother and as it turns out, I knew an awful lot. Odette Mould For Joanne and Jeff, the loss has been indescribable. "It has destroyed me," says Joanne. It's a feeling Lucy Connolly knows only too well. When her 19-month-old son Harry developed severe diarrohea just before Easter last year, she took him to a GP, who referred them to Northampton Hospital. "They thought it was a rotavirus infection so they kept him in for a day for observation," says Lucy, 29, an administrator from Northampton. I was concerned that they didn't give him a blood test, which our GP had suggested he would need. They were just giving him juice, but they should have given him Dioralyte, a drink which replaces salt and sugar levels. The next morning, Harry was discharged. But his worried parents took him back to the same ward the next day. "His blood pressure and heart rate were sky high, but they said he wasn't dehydrated, even though he couldn't keep anything down," says Lucy. After two hours we were sent home again with Dioralyte. Next day, Harry's grandmother, Val Faulkner, visited him and was horrified: "He had sunken eyes and looked terrible - he couldn't even lift his head. We were desperately worried. Frantic, they took him back to hospital, where they were told, yet again, that Harry was not dehydrated, and dispatched home. But 24 hours later, events took a tragic turn. Lucy put Harry to bed at 9pm but when she checked on him at 4am, her son was not breathing. Jane Hooks and Craig Bushell won a five-year legal battle against Doncaster and Bassetlaw Hospital NHS Foundation Trust after her fears about baby Bobby's health were dismissed as 'hysterical' Bobby died from meningitis at Doncaster Royal Infirmary despite being seen by two doctors The little boy had died in the night of dehydration and acute kidney failure after suffering from an inflammation of the colon that doctors had failed to spot. Lucy says: "I will never know how you can take a child to the doctor and they die of something so unnecessary." At Harry's inquest, the coroner blamed doctors" decisions not to re-weigh Harry or take blood and urine samples for their failure to diagnose his condition. Dr Sonia Swart, medical director for Northampton General Hospital NHS Trust, apologised to Mr and Mrs Connolly for its "failings." Lucy says: "I feel we were not listened to. Again and again, we begged the doctors and nurses to do something. But they never did. In July this year Lucy gave birth to a baby girl called Edie. It's a positive thing for our family, but this not the way it was supposed to be. Our daughter will never meet her big brother but we will ensure she knows how wonderful Harry was. When Odette Mould looks at her pretty nine-year-old daughter Jessica, she too sees something missing. Despite the birth of her son, Isaac, two years ago, who has brought joy back into their home, Odette knows her family will never be complete. Jessica's twin brother Harry died almost four years ago from a chest infection. The inquest into the five-year-old's death ruled that "gross failures" by the hospital where he was treated contributed to his death. I will never know how you can take a child to the doctors and they die of something so unnecessary. Lucy Connolly on the death of her son Harry Harry, who suffered from mild asthma, had been coughing for three days in March 2009 when Odette, 34, took him to the GP. He gave us antibiotics, but that evening Harry's breathing sounded strange so we took him straight to Milton Keynes Hospital. Doctors put Harry on a nebuliser and kept him in overnight. The next morning a doctor said Harry should come off the nebuliser and have an asthma pump instead. I was concerned as I wasn't sure that was right - I know from experience the nebuliser is much better at getting drugs into the body. Doctors at Great Ormond Street Hospital said Jasmine needed steroids but the medication came too late By 3pm, Harry was back on the nebuliser but there was little improvement and, by 6pm, he'd developed a temperature. Odette was then asked to bring Harry to another room to have a cannula inserted, a tube which allowed doctors to administer more drugs, but this meant he had to be taken off his asthma drugs and oxygen. At his inquest, the coroner found this was a crucial time during which he was not receiving the required observations, which amounted to "gross failure" to provide the basic medical attention he needed. Soon after, Harry collapsed and his lips turned blue. I was carrying Harry and screaming for help and then the crash team arrived. They put him on a ventilator and transferred him to Leicester Royal Infirmary. Odette and her husband, Lee, 34, were reassured Harry would be OK. But two days later doctors said he needed a brain scan. Odette immediately realised it was because he'd suffered lack of oxygen at Milton Keynes. Shockingly, the results showed Harry was brain dead. Hayley Fullerton died of a heart attack aged ten months. Her mother Paula Stevenson even offered a nurse a £100 bribe to help her deteriorating daughter but to no avail I just collapsed and screamed. I was on the floor. I just couldn't believe my beautiful son had gone. Odette and Lee faced the agonising task of telling their daughter what had happened to her twin brother. Jessica had never known a life without Harry. They were exceptionally close. We knew we needed to do whatever we could to help and support her. The family has now set up a charity called Harry's Rainbow that aims to help bereaved children and families. Odette still wishes she'd pushed doctors further: "I feel I didn't say enough at the time when I was in hospital. I kept thinking the doctors and nurses knew what they were doing. But that didn't turn out to be the case and it took us nearly three years to prove this at Harry's inquest. I kept thinking something wasn't right - but what do I know? But I was Harry's mother - and as it turns out, I knew an awful lot. To find out more, visit mothersinstinct.co.uk and harrysrainbow.co.uk