Coroner criticises toddler’s care
Thursday 10th October 2013, 3:30PM BST.
Doctors treating a 22-month-old for a serious infection failed to adequately recognise she was a vulnerable patient before she died on Christmas Day, a coroner has ruled.
Anabelle Shepherd, 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 (GOSH) in London, where she had undergone a bone marrow transplant to cure the condition, which had shown signs of being successful.
In the run-up to Christmas, the immuno-suppressed toddler was lethargic and was taken to the Queen Alexandra Hospital (QAH) in Portsmouth by her parents and admitted.
But her condition worsened and when she had a seizure she was moved to intensive care at Southampton General Hospital, where she died from the serious infection, despite attempts to stabilise her condition.
Managers at the QAH have changed their protocols of dealing with immuno-suppressed children in light of Anabelle’s death and the hospital has apologised for some of the care the toddler received and said they should have done better, the hearing was told.
Leanne and Lee Shepherd were heavily critical of the care their daughter received during the time she was at QAH.
They 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.
Mrs Shepherd said staff did not take blood and culture samples or monitor her fluid loss when Anabelle was admitted, and doctors said she had gastroenteritis.
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 2012.
She explained she had disagreed with the diagnosis of gastroenteritis and asked medical staff to note it.
Mr Shepherd said 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.
There were also hours of delays between blood tests coming back and visits from doctors, the inquest heard.
“I feel let down, frustrated and angry at the treatment we received at QA,” Mrs Shepherd said.
“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”.
Consultant paediatrician Simon Birch, who looked after Anabelle for some of her time at QA, told the three-day hearing 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.
Giving a narrative verdict, Southampton coroner Keith Wiseman said: “Her (Anabelle’s) treatment at Queen Alexandra Hospital in Portsmouth where she presented as unwell on the December 23 2012 did not give adequate recognition to her vulnerable clinical status.
“She is believed to have contracted an unspecified infection that led to septic shock and her death after transfer to Southampton General Hospital.
“It remains for me only to express once again my very sincere condolences to Mr and Mrs Shepherd on what for them has been I know a grievous loss.”
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 the child is 15.