Little girl with one of the rarest genetic diseases in the world was wrongly diagnosed with cancer resulting in a number of failings by a Glasgow hospital.
The family of Emily McDowall believe if she had been provided the right treatment at the Queen Elizabeth University Hospital (QEUH) campus she would have had a fighting chance against Pearson Syndrome.
Aged just five-years-old, Emily died of an infection in October 2021 and her family are now battling for answers regarding her treatment at the £842million complex, reports the Daily Record.
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She was one of less than 100 people across the globe who struggle with the condition that affects bone marrow, blood cells and pancreas.
Emily's family have now released a dossier and spoken out for the first time.
The dossier the highlights the issues with their daughter's care.
They show how:
●A specialist in Pearson Syndrome waited three years for a referral.
●She was wrongly diagnosed with cancer before the condition was discovered.
●Emily was treated for at least 17 infections, including sepsis, most of which her family said they knew nothing about.
●She died from an infection the hospital said could have been from a pet or paddling pool.
The family are now taking part in a major public inquiry into wider issues at the QEUH looking at issues with infections, ventilation, water contamination and how children became infected with rare bugs while receiving treatment.
The Kilmarnock mum, Samantha Pickering, said: “We were told that she was unwell because ‘it’s just the cancer’ but that wasn’t true. She didn’t even have cancer. When she got diagnosed with Pearson’s, we were told her illnesses were ‘just the Pearson’s’.
“Nobody explained to us that these were infections Emily had and no mention of them being related, or possibly related, to the hospital whatsoever. Every single one, we were not informed of.
"We knew there had been all the incidents with bird poo and other things, kids getting sick, because we were in the hospital the whole time. They kept telling us the place was safe and actually we hadn’t even been told what was going on with Emily.”
Emily's initial treatment at the facility came after she was delivered by an emergency section on July 27, 2017, at Crosshouse Hospital in Kilmarnock. She was transferred to the Schiehallion cancer ward at the RHC after being wrongly diagnosed with a rare type of blood cancer called myelodysplasia.
Several parents whose children were treated on the ward have complained about infections as part of the wider inquiry. During her short life, Emily was treated for at least 17 infections – 16 of which her family claim they were never told about.
NHS documents show how in September 2017, one of the infections caused Emily – just one at the time – to develop sepsis after bacteria was flushed through her body during a procedure to remove her Hickman line – a tube inserted into the body to deliver medicine.
The bug, Klebsiella oxytoca, was looked at in a case note review by an independent panel drafted in by the Scottish Government. The review shows it was “possibly” caused by the hospital environment but there was not enough evidence to conclude absolutely.
Her uncle, Kenneth Murdoch, said: “We weren’t aware of any infections up until April 2021 when we got the case note review. Within that there was mention of two or three other infections that we didn’t know anything about.
“That’s when we started looking more closely at Emily’s medical records and discovered she had actually been treated for all sorts of infections.”
In December 2018, her diagnosis was changed from cancer to Pearson Syndrome and the family asked for a referral to a Great Ormond Street specialist. The NHS board disputes their claims about a lack of communication.
In June 2019, Emily’s consultant wrote in her medical notes: “Her parents requested a referral for a second opinion at a centre in England. I am happy to support that and have made a request for her to be seen at Great Ormond Street Hospital, London.
“Pearson Syndrome is extremely rare and I am concerned our experience here is limited by the rarity of this condition.”
Case notes show that two years later the family had still to receive a referral.
Out of desperation, Kenneth contacted Great Ormond Street directly, only to be told they had nobody by Emily’s name on file and had no idea there was a child with Pearson’s in Scotland. The contact was almost three years after she was diagnosed with Pearson’s.
Kenneth said: “I contacted the specialist and couldn’t believe it when they said they’d not heard of Emily and had nothing on their system for a referral.”
Eventually, the specialist was able to have a consultation with Emily and her family by video, weeks before she died.
Kenneth, 45, said: “She also had her notes and told us in the first week of Emily’s life she should have been diagnosed with Pearson’s, based on her symptoms. The specialist said she couldn’t believe Emily was able to walk and talk, and that she was so advanced.
“We feel as if things could have been different if Emily was able to get the diagnosis, and the proper medical support from the beginning.
“Instead it felt as if we were just an inconvenience, and Emily was just a huge cost burden to the health board.”
Just weeks after Kenneth contacted the specialist, Emily died. She had been taken out of hospital in Glasgow to return home to spend time with her family including dad Kevin McDowall, 37, and older siblings Natasha, 18, David, 14, and Nicole, 13.
She passed away at Crosshouse where she had been admitted after falling ill. In a response to a complaint from the family, the health board suggested it may have been related to a paddling pool at home, or even the family’s pets – something which has angered the family.
Stephanie Spencer from Thompsons Solicitors, who represents Emily’s family and many others involved in the Scottish Hospital Inquiry, said: “A family looks to a hospital to care for their child in their most vulnerable days and not be subjected to infections which could have come from a hospital’s structure and environment.”
The NHSGGC said: “Records show regular communications from doctors and nurses throughout Emily’s
treatment – including specific advice on infections and infection control.
“When the family raised these issues in 2021, this was fully investigated and their complaint was not upheld.
“A separate issue regarding referral to a second centre was also investigated and we apologised to the family at the time.”
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