28/01/2011-31/07/2017

Coco was the most perfect, precious little girl, who was at the centre of our family. She loved Justin Bieber and Little Mix, chocolate brownies and ice cream, and all things Disney especially Toy Story. Coco attended St Ives Infant School and was awaiting starting school full time when she died, aged just 6, in July 2017. Coco was autistic.

When Coco became ill we called an ambulance and took her to the Emergency Department at Treliske. She was sent home and she became increasingly ill. We were desperate and called another ambulance the next day and Coco was admitted into hospital. What followed was our worst nightmare as we watched Coco become more ill, not better, and we felt staff were not listening to us. Eventually she was admitted to intensive care and transferred to Bristol, where she became more poorly and died.

In the 4.5 years since Coco died we have constantly searched for the answers about what happened to our precious daughter. We participated in an independent investigation conducted on behalf of Royal Cornwall Hospitals Trust, reliving our experiences and in October 2018 we sat alongside the Trust CEO at a press conference as she “fully accepted” the report’s findings which concluded Coco had disseminated bacterial sepsis, and she publicly apologised for the failure to recognise sepsis.

There was no inquest opened by the Bristol coroner when Coco died. We are only here today because the Cornwall Coroner Andrew Cox applied to the Chief Coroner to hold an inquest without Coco’s body, when he became aware of the contents of the independent investigation.

Four and a half years after Coco died, three years after the Trust fully accepted a series of failings in their care, we heard for the first time in court the suggestion that Coco did not have sepsis. We also heard one of the doctors admit in court he made mistakes, overlooked things and underestimated the seriousness of Coco’s condition. This was another new development.

We feel that we have been misled for years. The independent report has been removed from the Trust’s website, and they have changed their tune completely.

The Coroner concluded there were a number of failings and missed opportunities to provide Coco with the care she needed.

He said:

· Coco should have been admitted when we first went to the Emergency Department

· There was a delay in giving Coco IV fluids

· Coco’s fluid management was sub-optimal

· If Coco’s fluids has been started earlier there would have been earlier escalation in her care at Treliske

· He described Coco as “something of a hostage to fortune” when the Trust discussed external transfer to Bristol Paediatric Intensive Care Unit, without transferring her internally to Intensive Care which “led to an avoidable delay in the escalation of supportive care and a serious worsening of her condition so that she had to be significantly resuscitated before the transfer to the PICU in Bristol could take place”

· Coco was not prescribed antibiotics which proved correct as she did not have sepsis but this “was only through good fortune… it was not because of a considered clinical decision”

· “A clear decision had to be made about whether to administer antibiotics or not, with a rationale provided to the family for the decision. That did not happen”

· Several nursing issues came to light including delays in sending stool samples, failure to obtain blood pressure, not taking Coco’s weight on admission or before she began IV fluids

· the Trust’s Learning Disability and Autism Team were not contacted to help obtain blood pressures.

The Coroner found Coco did not have sepsis and that she died from severe HUS (haemolytic uraemic syndrome). He found that despite all these failings, on a balance of probability, that none of them caused or contributed to Coco’s death.

We need some time to come to terms with the latest developments. We heard in court that the evidence about HUS is open to a lot of interpretation, but it was suggested that early and aggressive fluid management is key. The nephrologist expert witness said he didn’t claim any special interest in HUS, but he was very certain that none of the failings contributed to Coco’s death. We find his certainty hard to accept.

We would like to thank our family and friends, the people of St Ives and elsewhere who have supported us, donated to cover our legal costs, shared their stories and sent words of encouragement and love. We are grateful to the Coroner for ensuring that there was an inquest into Coco’s death. We would also like to thank our legal team, Charlotte Tracy of Barcan Kirby, and Lorna Skinner QC of Matrix Chambers. Without our barrister offering to act pro bono at the inquest hearing we’re not sure what would have happened. It seems desperately unfair that we have had to crowdfund to cover our legal fees, and rely on our barrister waiving her charges, when the hospital’s legal team are paid for by our taxes.

Whatever the court found we will never be able to erase the experience of our time in Treliske from our minds. In many ways we’re left with more questions than answers.

Coco should now be at secondary school, she should be brightening our lives with her gorgeous smile and living her best life. We will never come to terms with life without Coco in it.