By . Mark Duell . PUBLISHED: . 12:02 EST, 19 September 2013 . | . UPDATED: . 12:02 EST, 19 September 2013 . 'Robbed from her mother': Anabelle Shepherd died from a serious infection on Christmas Day 2012 . A mother told an inquest today she was robbed of her 22-month-old daughter because hospital staff had not done enough to treat the transplant patient before she died of an infection. Leanne Shepherd and her husband Lee heavily criticised staff at Portsmouth’s Queen Alexandra Hospital for the care of Anabelle, who was admitted just before Christmas last year. Anabelle, from Portsmouth, had been diagnosed with the rare genetic condition Hurler’s Syndrome, but was progressing well under the care of Great Ormond Street Hospital in London. She had a bone marrow transplant at GOSH to cure the condition, which showed signs of success. Before Christmas however she was lethargic and was taken to QAH by her parents. But her condition worsened and when she had a seizure she was moved to intensive care at Southampton General Hospital, where she died from a serious infection on Christmas Day, despite attempts to stabilise her condition. Managers at the QAH have changed their protocols of dealing with immuno-suppressed children in the light of Anabelle’s death and the hospital has apologised for some of the care the toddler received, the hearing was told. Mr and Mrs Shepherd had been looking after Anabelle at home for months and were concerned about infection because she was taking drugs to suppress her immune system after the transplant in August last year. When she became ill, Mrs Shepherd was told by GOSH to take her to QAH. Treatment Lee and Leanne Shepherd heavily criticised staff at Portsmouth¿s Queen Alexandra Hospital (pictured) for the care of 22-month-old Anabelle, who was admitted just before Christmas last year . She accused the hospital of a ‘lack of care and action’ and she and her husband Lee were concerned about a lack of medical intervention and assessment as their daughter’s condition worsened over December 23 and 24. She explained she had disagreed with the diagnosis of gastroenteritis and asked medical staff to note it. Mr Shepherd said that the decision to give Anabelle oral antibiotics, which she threw up, when an intravenous dose would have been better could not be discussed because the doctor had to rush off for an emergency. It was not until later when Anabelle had become very ill that IV antibiotics were administered and blood tests and cultures taken. Awful time: Leanne, 38, and Lee Shepherd, 43, are pictured outside the inquest in Southampton today . There were also hours of delays between blood tests coming back and visits from doctors, the inquest heard. ‘I felt I had to prompt the nursing staff to do what I considered to be basic care for an immuno-suppressed child,’ Mr Shepherd’s statement said. ‘I feel completely let down by QA and that no-one took what we said seriously.’ Mrs Shepherd said she had been in complete shock and was sick when her daughter’s condition started to deteriorate and medical staff and machines went into the room. ‘I feel let down, frustrated and angry at the treatment we received at QA. The level of care, particularly on December 24, was below standard. ‘It seems to be that everything was done reactively and I believe this potentially resulted in her death. ‘I feel that Anabelle was badly let down by her home town and we were robbed of our daughter.’ She said the family had been ‘completely crushed’ by the death. ‘Our lives and hearts have a hole that will never be filled,’ she added. Mr Shepherd said that doctors at Southampton had been frustrated at the care Anabelle received at Portsmouth and he said that one medic had called it a ‘calamity’. ‘We are absolutely heartbroken and distraught by Anabelle’s death, and not a moment goes by without the thought of seeing her little face again,’ he said. A post-mortem examination could not identify what was the infection that caused Anabelle’s death and whether it was viral or bacterial, the inquest heard. Consultant paediatrician Simon Birch, who looked after Anabelle for some of her time at QA, said that in retrospect there had been a lack of communication with the parents when she was admitted but he said a lot was done to treat her even though she could have been seen more regularly. 'I feel that Anabelle was badly let down by her home town and we were robbed of our daughter' Leanne Shepherd . ‘Although we are still not certain it would have altered the outcome, we fully acknowledge it would have given more clarity to Anabelle’s care,’ he said. He said staff had recognised she was immuno-suppressed otherwise he may not have seen her and she might well have been discharged as would have happened with a healthy child. He said there had been a lack of communication in part because it was unusual for Anabelle not to be known to the hospital. Staff at QAH did consult with Great Ormond Street when Anabelle was admitted, the hearing was told. He said that there were no protocols to deal with a child like Anabelle and her condition at the time and he admitted there was a gap in the process that had now been filled. He said it would have been better with a immuno-suppressed child like Anabelle for medics to have made the presumption of infection and prescribed a wide-ranging IV antibiotic. 'We are absolutely heartbroken and distraught by Anabelle’s death, and not a moment goes by without the thought of seeing her little face again' Lee Shepherd . ‘The lesson we learn is that presumption should not be based on a ready to take action at the first sign of deterioration, it should be automatic and follow a certain procedure and reduce down from that,’ he told the hearing. He explained that now blood and cultures were taken and IV antibiotics administered on children in similar positions to Anabelle within one hour of admission with more frequent observations. Hurler’s syndrome affects one in 117,000 children. Sufferers are missing an enzyme and without treatment it means that complex sugars accumulate within the body’s tissues, causing damage to them. An effective treatment is now available which involves a bone marrow transplant so that the new marrow can make the missing enzyme otherwise the condition is fatal by the time a child is 15. Southampton coroner Keith Wiseman will give a narrative verdict at a later date.
Leanne and Lee Shepherd strongly criticise staff at Portsmouth hospital .
Transplant patient Annabelle was diagnosed with rare genetic condition .
Had bone marrow transplant at London's Great Ormond Street to cure it .
But girl became lethargic and later died in hospital on Christmas Day .
By . Mark Duell . PUBLISHED: . 12:02 EST, 19 September 2013 . | . UPDATED: . 12:02 EST, 19 September 2013 . 'Robbed from her mother': Anabelle Shepherd died from a serious infection on Christmas Day 2012 . A mother told an inquest today she was robbed of her 22-month-old daughter because hospital staff had not done enough to treat the transplant patient before she died of an infection. Leanne Shepherd and her husband Lee heavily criticised staff at Portsmouth’s Queen Alexandra Hospital for the care of Anabelle, who was admitted just before Christmas last year. Anabelle, from Portsmouth, had been diagnosed with the rare genetic condition Hurler’s Syndrome, but was progressing well under the care of Great Ormond Street Hospital in London. She had a bone marrow transplant at GOSH to cure the condition, which showed signs of success. Before Christmas however she was lethargic and was taken to QAH by her parents. But her condition worsened and when she had a seizure she was moved to intensive care at Southampton General Hospital, where she died from a serious infection on Christmas Day, despite attempts to stabilise her condition. Managers at the QAH have changed their protocols of dealing with immuno-suppressed children in the light of Anabelle’s death and the hospital has apologised for some of the care the toddler received, the hearing was told. Mr and Mrs Shepherd had been looking after Anabelle at home for months and were concerned about infection because she was taking drugs to suppress her immune system after the transplant in August last year. When she became ill, Mrs Shepherd was told by GOSH to take her to QAH. Treatment Lee and Leanne Shepherd heavily criticised staff at Portsmouth¿s Queen Alexandra Hospital (pictured) for the care of 22-month-old Anabelle, who was admitted just before Christmas last year . She accused the hospital of a ‘lack of care and action’ and she and her husband Lee were concerned about a lack of medical intervention and assessment as their daughter’s condition worsened over December 23 and 24. She explained she had disagreed with the diagnosis of gastroenteritis and asked medical staff to note it. Mr Shepherd said that the decision to give Anabelle oral antibiotics, which she threw up, when an intravenous dose would have been better could not be discussed because the doctor had to rush off for an emergency. It was not until later when Anabelle had become very ill that IV antibiotics were administered and blood tests and cultures taken. Awful time: Leanne, 38, and Lee Shepherd, 43, are pictured outside the inquest in Southampton today . There were also hours of delays between blood tests coming back and visits from doctors, the inquest heard. ‘I felt I had to prompt the nursing staff to do what I considered to be basic care for an immuno-suppressed child,’ Mr Shepherd’s statement said. ‘I feel completely let down by QA and that no-one took what we said seriously.’ Mrs Shepherd said she had been in complete shock and was sick when her daughter’s condition started to deteriorate and medical staff and machines went into the room. ‘I feel let down, frustrated and angry at the treatment we received at QA. The level of care, particularly on December 24, was below standard. ‘It seems to be that everything was done reactively and I believe this potentially resulted in her death. ‘I feel that Anabelle was badly let down by her home town and we were robbed of our daughter.’ She said the family had been ‘completely crushed’ by the death. ‘Our lives and hearts have a hole that will never be filled,’ she added. Mr Shepherd said that doctors at Southampton had been frustrated at the care Anabelle received at Portsmouth and he said that one medic had called it a ‘calamity’. ‘We are absolutely heartbroken and distraught by Anabelle’s death, and not a moment goes by without the thought of seeing her little face again,’ he said. A post-mortem examination could not identify what was the infection that caused Anabelle’s death and whether it was viral or bacterial, the inquest heard. Consultant paediatrician Simon Birch, who looked after Anabelle for some of her time at QA, said that in retrospect there had been a lack of communication with the parents when she was admitted but he said a lot was done to treat her even though she could have been seen more regularly. 'I feel that Anabelle was badly let down by her home town and we were robbed of our daughter' Leanne Shepherd . ‘Although we are still not certain it would have altered the outcome, we fully acknowledge it would have given more clarity to Anabelle’s care,’ he said. He said staff had recognised she was immuno-suppressed otherwise he may not have seen her and she might well have been discharged as would have happened with a healthy child. He said there had been a lack of communication in part because it was unusual for Anabelle not to be known to the hospital. Staff at QAH did consult with Great Ormond Street when Anabelle was admitted, the hearing was told. He said that there were no protocols to deal with a child like Anabelle and her condition at the time and he admitted there was a gap in the process that had now been filled. He said it would have been better with a immuno-suppressed child like Anabelle for medics to have made the presumption of infection and prescribed a wide-ranging IV antibiotic. 'We are absolutely heartbroken and distraught by Anabelle’s death, and not a moment goes by without the thought of seeing her little face again' Lee Shepherd . ‘The lesson we learn is that presumption should not be based on a ready to take action at the first sign of deterioration, it should be automatic and follow a certain procedure and reduce down from that,’ he told the hearing. He explained that now blood and cultures were taken and IV antibiotics administered on children in similar positions to Anabelle within one hour of admission with more frequent observations. Hurler’s syndrome affects one in 117,000 children. Sufferers are missing an enzyme and without treatment it means that complex sugars accumulate within the body’s tissues, causing damage to them. An effective treatment is now available which involves a bone marrow transplant so that the new marrow can make the missing enzyme otherwise the condition is fatal by the time a child is 15. Southampton coroner Keith Wiseman will give a narrative verdict at a later date.
on Christmas Day 2012 . A mother told an inquest heavily criticised staff at Portsmouth’s Queen with the rare genetic condition Hurler’s of Great Ormond Street Hospital in London. She had a bone marrow transplant at GOSH to cure the Christmas however she was lethargic and was taken Treatment Lee and Leanne Shepherd heavily