Our three-year-old daughter Ryleigh was still very unwell when we were advised to take her home

Little Ryleigh was admitted into the Blackpool Victoria Hospital on the 9th August 2021 after becoming lethargic and floppy following a few days of cold symptoms.

Her blood tests were abnormal. One of the results revealed that the level of creatine kinase (CK) in Ryleigh’s blood was 300,000. This was more than 2,000 times the normal range of between 100 to 140. Colleagues in Leeds advised the hospital staff that this should be investigated further, and that advice should be sought from a neuromuscular specialist.

This was not followed up. Ryleigh continued to be unwell and there were further alarming symptoms including profound weakness in her limbs, pain and dark coloured urine. The hospital failed to investigate these symptoms adequately, or at all, and Ryleigh was discharged five days after admission.

She was readmitted into Blackpool Victoria Hospital nearly three months later after becoming unwell again and she died on 8th November 2021 following a cardiac arrest.

Representing Ryleigh’s parents Diane Rostron, medical negligence solicitor, said: “Ryleigh was a healthy little girl until she became very unwell in August 2021. The significantly raised CK levels in her blood was a red flag of a medical emergency.

“High levels of creatine kinase (CK) indicate a breakdown of muscles which is released into the blood. Ryleigh’s CK levels were not only heightened, but they were also no less than 2,000 times the normal level. Such levels can result in cardiac arrest.

“Our independent medical experts agree that the only possible diagnosis with these results was rhabdomyolysis. This is a life threatening, but treatable, condition which causes muscles to break down

“The hospital received advice from colleagues in Leeds following the abnormal blood results, including the CK level, but failed to follow up on the recommendation that neuromuscular specialist advice should be sought.

“Ryleigh’s parents raised concerns that her urine was coca cola coloured, another red flag symptom of rhabdomyolysis, but the hospital failed to adequately test her urine. The hospital also failed to take seriously her parents’ concerns that her muscles were weak.

“They did not consider the importance of the grossly abnormal CK result and what the cause of that could be, namely rhabdomyolysis. Had due consideration been given to this result and her clinical presentation, advice from a specialist centre would have been sought prior to Ryleigh being discharged from the hospital’s care.

“If they had sought specialist advice it is our experts’ opinion they would have been advised to follow the guidance issued by The British Inherited Metabolic Disease Group (BIMDG). This clearly explains how to medically manage a rhabdomyolysis flare up to prevent fatal heart or kidney damage.

“Blackpool Victoria Hospital discharged a still unwell Ryleigh five days after admission with no guidance provided to her parents and advice that she would get better as quickly as she became unwell. There was no referral made for a review by a neuromuscular specialist”.

Ryleigh’s parents 40 year old Andrew Hillcoat, an accountant, and 44 year old Caroline Bee, a civil servant, said: “Ryleigh was a beautiful little girl and a real joy to be around. She was always happy and giggling. She loved Peppa Pig, carrot sticks and peas. She was a very kind, easy child. She was born and died at Blackpool Victoria Hospital.

“When we were told during her August admission that she had heightened CK levels in her blood we searched online for a possible cause. Rhabdomyolysis came up but we trusted that the team looking after Ryleigh knew what they were doing and would help make our only child better. A junior doctor even told us that her CK levels were an indication of muscle break down

“We were, and still are, very distraught following the loss of Ryleigh and now know that had the hospital recognised that her CK levels were a medical emergency, she would not have been discharged with no care plan just five days later.

“Ryleigh was still very unwell when we were advised to take her home. She couldn’t walk for the first nine days because it caused her too much pain. She started crawling on day six and did not have her normal mobility back until day 11.

“After her death the cause of Ryleigh’s rhabdomyolysis was identified as a metabolic disorder. We accept that getting to the bottom of what caused the rhabdomyolysis could only have been done through a specialist unit.

“The hospital, however, could and should have recognised the unambiguous symptoms of rhabdomyolysis and provided the BIMDG guidance to help us care safely for Ryleigh until the root of her illness was being investigated by a specialist unit.

“She should still be here today. We have to live with the knowledge that her death at the age of just three could have been avoided.”

A Lancashire coronrer will hear evidence over the next three days ahead of making a ruling on her cause of death at Blackpool Coroner’s Court.