Trixie Mo’s parents more urgency should have been shown when she arrived at hospital with a heart problem. ‘No word big enough can describe how much we love her. We miss her so deeply every single day.’
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The distraught parents of a special little girl who had a rare ‘mermaid birth’ and brought so much joy to all around her believe more urgency should have been shown by paediatric staff at Cornwall’s main hospital when she was admitted with a heart problem.
Ashleigh and James Cooke told an inquest into the death of their precious baby girl Trixie Morvoren how they feel specialist care and ‘the top dog’ cardiologists or consultants at the Royal Cornwall Hospital should have been involved as the one-year-old’s health deteriorated.
Trixie Mo – as she was known to her loved ones – was taken to the Treliske hospital by ambulance after turning pale white and drifting in and out of consciousness at home in Newquay and her mum Ashleigh feared she would die in her arms.
Trixie was moved from the emergency department to the paediatric assessment unit where staff struggled to insert a cannula so blood samples and intravenous treatment could be administered.
Trixie Mo passed away on April 29 last year, five weeks before the birth of her younger sibling. She could not be resuscitated in hospital.
Her parents believe ultrasound guided cannulating should have taken place from the outset when staff knew Trixie Mo’s history of cannulation difficulty and cardiac issues.
They told the first day of what is expected to be a three-day inquest into Trixie Mo’s death, which was held in Truro today (Monday, October 5), how they feel the top consultants should have taken care of Trixie Mo rather than her being seen by registrars.
Rachel Nicholls, the consultant paediatrician who looked after Trixie Mo, told the hearing how registrars rather than consultants are the cannulation experts as they do it routinely, while consultants do not, which is why she asked her registrars to do it.
She also said using ultrasound guided cannulation is a skill not every nurse or registrar has but is something the Royal Cornwall Hospitals Trust, which runs Treliske at Truro, is working to change and improve.
Ashleigh, who had been almost eight months pregnant with her third child at the time of Trixie Mo’s death, told the inquest how Trixie had thrown herself into every aspect of life, how Crazy Frog was her favourite song and how much she loved theatre and puppet shows and riding around her village on her ride-on car.
Ashleigh told the hearing that Trixie Mo had an en caul birth or veiled birth which happens when a baby is born completely enclosed inside an unruptured amniotic sac which makes them look like they were born in a bubble.
En caul births are extremely rare and occur in one in 80,000 or so births. They are known as ‘mermaid births’ hence the middle name Ashleigh and James gave Trixie – Morvoren – which means mermaid in Cornish.
“Trixie Mo brought a big smile on people’s faces,” Ashleigh said. “Fish and chips was her favourite food and she would steal yours from your plate if you let her. She was developing a cheeky smile and had an infectious laugh.
“She had lots of friends at nursery and at the groups she went to. Her older sister Phoebe was so proud of Trixie and was always protective of her. We had so many hopes for her.”
Ashleigh added: “No word big enough can describe how much we love her. We miss her so deeply every single day. The world is brighter because she was in it.”
Born with Down syndrome, Trixie Mo was diagnosed with a congenital heart defect that required surgery in Bristol by the time she was six month old. The inquest heard how there were complications to the procedure but after four days in intensive care Trixie Mo pulled through and her physical development came on leaps and bounds after that.
“She was thriving,” Ashleigh said.
It is because of her heart condition and that Trixie Mo would require another intervention before she was five, that James and Ashleigh were even more concerned when their baby girl ended up in hospital a few months short of her second birthday.
One of the concerns raised at the inquest by Ashleigh was that “everyone seemed very chilled” or kept telling them it was just the way Trixie Mo was presenting and she “seemed fine in herself”.
“I was baffled that no-one seemed that concerned,” Ashleigh told the inquest. “Why wasn’t more effort made to give her supplementary oxygen? Everyone seemed so casual. There never seemed to be any sense of urgency.”
The inquest heard several attempts were made to insert a cannula and take blood from Trixie Mo and small ‘crackle-like’ sounds were found in her chest which Dr Nicholls said could have been from an infection.
“That’s when a specialist cardiologist should have been involved and urgency should have begun,” Ashleigh told the inquest.
James told the hearing how, as a non-medical professional, he felt left out and in the dark as Trixie Mo’s condition deteriorated and felt that doctors and nurses were speaking to Ashleigh more as a colleague than as a mother of a very sick child.
“I felt very much in the dark,” he told the hearing.
Dr Nicholls said several attempts were made to cannulate Trixie Mo and she thought her condition may have been caused by an infection or a cardiac issue but difficulty cannulating Trixie Mo made it difficult to find the right cause of her illness and tackle it.
She added: “We continued to try and find a solution with the anaesthetist coming to help. We continued to work to that goal but it was difficult and couldn’t be achieved.
“We had a child who was warm and looked like they were not continually deteriorating. I was not expecting the collapse in health that she suffered. I was shocked to hear she had such a collapse.”
Fellow consultant paediatrician Veronica Nijloveanu, who took over from Dr Nicholls later that day, said Trixie Mo’s death had been an “extremely rare scenario”.
She told the hearing that Trixie Mo had had a successful complex cardiac surgery in Bristol the year before and all resuscitation processes on the day were followed thoroughly.
She added: “We don’t understand what happened.”
Katy Huxstep, a consultant paediatrician at RCH, said looking forward, communication with patients and parents about treatment and procedures need to be improved.
The inquest is expected to conclude on Wednesday (October 7).
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