The parents of a one-year-old girl born in an extremely rare "mermaid birth" have told an inquest they believe more urgency should have been shown as their daughter's health deteriorated in hospital.
Trixie Morvoren, affectionately known as Trixie Mo, was rushed to the Royal Cornwall Hospital after turning pale and drifting in and out of consciousness at home in Newquay. Her mum Ashleigh Cooke feared she would die in her arms.
Death and resuscitation attempts
Trixie Mo, who had Down syndrome and a congenital heart defect, died on April 29 last year, five weeks before the birth of her younger sibling. Attempts to resuscitate her were unsuccessful.
Ashleigh and James Cooke believe specialist care should have been brought in as the one-year-old's condition worsened. Staff reportedly struggled to insert a cannula to take blood and administer treatment. Her parents believe ultrasound-guided cannulation should have been used because of her history of difficult cannulation and cardiac problems.
Medical evidence at inquest
Consultant paediatrician Rachel Nicholls told the inquest that registrars, rather than consultants, were the experts in cannulation because they routinely carry out the procedure. She added that ultrasound-guided cannulation is a skill not every nurse or registrar has, but said the Royal Cornwall Hospitals Trust is working to improve this.
Ashleigh said Trixie Mo had an en caul, or veiled, birth, meaning she was born completely enclosed inside an unruptured amniotic sac. Such births occur in around one in 80,000 and are sometimes known as "mermaid births", inspiring her middle name Morvoren, which means mermaid in Cornish.
Family's tribute and concerns
Paying tribute, Ashleigh said: "Trixie Mo brought a big smile on people's faces. 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."
She 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."
The inquest heard Trixie Mo underwent surgery in Bristol for her heart defect by six months old and recovered after four days in intensive care despite complications.
"She was thriving," Ashleigh said. Trixie Mo was expected to need another intervention before turning five but became unwell a few months before her second birthday.
Ashleigh said "everyone seemed very chilled" as her daughter's condition worsened and the family were told she "seemed fine in herself". She said: "I was baffled that no-one seemed that concerned. 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 hearing was told "crackle-like" sounds were detected in Trixie Mo's chest, which Dr Nicholls said could have indicated an infection.
Ashleigh said: "That's when a specialist cardiologist should have been involved and urgency should have begun."
James said he felt excluded as his daughter's condition deteriorated and believed staff spoke to Ashleigh, who was almost eight months pregnant, more as a colleague than the mother of a seriously ill child. "I felt very much in the dark," he told the hearing.
Further medical testimony
Dr Nicholls said Trixie Mo's illness could have been caused by an infection or cardiac problem, but difficulties cannulating her made it harder to establish the cause and provide treatment.
She said: "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."
Consultant paediatrician Veronica Nijloveanu, who later took over Trixie Mo's care, described her death as an "extremely rare scenario". She said resuscitation procedures had been thoroughly followed, adding: "We don't understand what happened."
Consultant paediatrician Katy Huxstep said communication with patients and parents about treatment and procedures should be improved.
The inquest is expected to conclude on Wednesday, October 7.
