The full story of how a 9 year old boy died from sepsis days after being discharged from hospital

The death of a nine year old boy from Newport from sepsis was "neglectful" , a coroner has concluded after an inquest that lasted a week.

Dylan Cope from Newport was initially taken to the Grange Hospital on the evening of December 6th 2022 after being referred by his doctor for pain in his abdomen.

Later that night he tested positive for influenza and was discharged with a factsheet about coughs and colds for children over the age of one.

On Saturday 10th December, when his condition rapidly deteriorated, he was rushed back to hospital, but by then it was almost certainly too late to save him.

Dylan died from septic shock from a perforated appendix on December 14th after spending days in intensive care at the University Hospital of Wales in Cardiff.

This is the full story of where opportunities to save his life were missed by medical and health professionals during a week in 2022 that devastated his family.

“Creative imagination and a quirky sense of humour”

Dylan Cope was born, the youngest of three siblings, on March 13th 2013 in Newport. His dad, Laurence, is a web developer and his mum, Corinne, is a civil servant.

Dylan, who had been a "fit and healthy" boy according to his dad, was just nine years old when he died. A family video shows Dylan saying his tenth year was taking “way longer than usual” to pass before he finally reached the “super exciting” milestone of double digits.

His dad Laurence gave a witness statement, read on his behalf to the court, in which he said Dylan enjoyed baking with his mum Corinne, playing with his sister, wrestling his brother and bouncing on the trampoline.

“He was such a unique character and lovely blend of feisty and sensitive”, Mr Cope said.

“He saw the beauty of life but also the injustice and was quick to make his views known. Dylan’s strength of character and fierce independence balanced with his softer, endearing, sensitive side were traits that made him rather unique. There is no doubt that he would have grown up to do some very interesting things in his life.”

The missed chance to identify appendicitis

Dylan’s future was taken away from him in the space of a little over a week by sepsis and, an inquest has now confirmed, numerous mistakes by medical professionals.

It was December 6th 2022 and after a week off school with various symptoms including vomiting and abdominal pain, Dylan was taken to his GP.

After an assessment of his condition, Dr Amy Burton wrote Dylan a referral for the Grange Hospital in Cwmbran, noting a particular symptom called ‘guarding of the right iliac fossa’, which refers to severe sensitivity in the lower abdomen.

A consultant paediatric surgeon who also gave evidence told the court that this was “very significant information” because it is indication that there may be inflammation of the inner abdominal surface, often due to appendicitis.

Mr Singh said that once ‘guarding’ of the right abdomen is noticed in a child, appendicitis must be ruled out by a senior medic by all means available before any other possible diagnosis is considered.

When first observations were taken after 8pm at the Grange Hospital, Dylan was defined as tachycardic, with a heart rate over 100.

“I’d be very worried about a heart rate of 152”, Mr Singh said, “150 plus heart rate is a trigger for me”.

The coroner, Caroline Saunders asked him: “Is that that the sort of red flag that should have been brought to the attention of a senior clinician?

“Absolutely”, replied Mr Singh.

After being triaged on arrival at the Grange on December 6th, Dylan was seen by Samantha Hayden, a Paediatric Nurse Practitioner who was the first person in the hospital to assess the nine year old.

She told the inquest that she had not read the GP’s referral before she made an assessment of his condition. She said that was because the unit had been “exceptionally busy”, and that she did not want to spend time on a computer reading his notes.

Dylan’s dad Lawrence said Miss Hayden had seemed under pressure.

“I didn’t think she engaged with me very well and seemed either stressed or just busy. For example, I would explain something about Dylan’s symptoms, but not get acknowledgment from her as she was focusing on Dylan”.

Mr Cope said an unidentified male medic later came in to see Dylan, who explained to him that it is highly unlikely that there was an issue with Dylan’s appendix, as Dylan had reported more pain on the lower left side of his abdomen, and the appendix is positioned on the lower right.

“I asked [if Dylan’s appendix could be on his left side] but he dismissed it with a simultaneous wave of his hand saying “no, no”. He dismissed any concern with Dylan’s appendix being the cause of his symptoms”.

Dr Andy Bagwell, Deputy Medical Director for Aneurin Bevan University Health Board , told the inquest that the medic was “potentially someone who shouldn’t have been there”, but they were unable to determine who they think it was despite an internal investigation.

The nurse practitioner told the inquest she did not think that Dylan’s symptoms were consistent with appendicitis, but denied she “disregarded” it.

Dylan was sent for observations just before midnight on December 6th by other medical staff. His observations showed an increasing trend in temperature from 37.4 degrees C to nearly 39 degrees. Miss Hayden told the inquest that these observations were not shared with her.

At approximately 23:15, the nurse practitioner came back with Dylan’s results and declared “Mystery solved! Dylan’s tested positive for Influenza A” and that his abdominal pain was due to “swollen lymph glands”.

The inquest heard evidence from Peter Bassett, a nurse of 20 years experience on the children’s assessment unit at Aneurin Bevan University Health Board.

Mr Bassett told the court that in the early hours of December 7th, he had been told by an unnamed doctor unknown to him that Dylan could go home.

“Did you check that Dylan had had a senior review [by an experienced doctor]?”, the coroner asked him.

“No, I’d been given his discharge form which usually is only done when they’d had a senior review so I assumed that had been done”.

Ms Hayden said she had prepared the discharge note pre-emptively, expecting it to be added to or changed on the basis on an examination of Dylan by a more experienced doctor later that evening.

A "breakdown in communication" meant the doctor on duty who should have assessed Dylan thought she did not need to, because his condition had been explained by the flu diagnosis.

"I knew that we were in a danger spot because it was very busy so I asked her if I needed to see him", Dr Lianne Doherty told the court, "and [Miss Hayden] told me she had prepared his discharge form so it was my understanding that she did not need me to see him”.

In court the coroner, Caroline Saunders, said: "Let me be clear, she did not tell you about the abdominal pain?

“No", Dr Doherty replied.

"You were not aware that his GP had indicated some “guarding” of the abdomen?", the coroner went on.

"No... It’s not unusual for a child to present with abdominal pain when they have a viral illness… so unless there were concerns from an abdominal exam... I wouldn’t routinely review automatically".

Dr Doherty added: “If I had been aware of any pain on the right hand side that would have triggered a senior review”.

The court heard that if Dylan had been diagnosed with appendicitis on the night of the 6th December, Mr Singh believes he would have been started on a course of antibiotics immediately, before being operated on the following day.

“When in doubt, operate”, Mr Singh told the court, “It is a very low threshold, particularly in children under the age of 10”.

Instead, Dylan’s father Laurence was given a leaflet about cold and flu for children and told he was fine to take his son home.

A consultant paediatric surgeon, Dr Singh, who gave evidence in court said that on the balance of probability, it is more than likely that Dylan already had appendicitis on the night of the 6th, morning of the 7th.

The opportunity missed to readmit Dylan to hospital sooner

Mr Cope was told that he could expect Dylan’s condition to improve in a few days, but instead it worsened.

On December 10th 2022l, Dylan's family were concerned he was not improving and called the emergency number given to them when they left hospital. Just before midnight they got through at the 19th attempt and were told to call the NHS 111 number. Dylan's father rang 111 and while he was waiting on hold they noticed Dylan was breathing more quickly.

He was on the phone waiting for over two hours before getting through at 2.45pm, even though the 111 service aims to answer all patients inside 60 seconds.

The details of this call were revealed to the court by Peter Brown, Assistant Director of Operations at the Welsh Ambulance Service. He was, at the time of Dylan’s death, responsible for managing the 111 service.

The call handler asked Mr Cope: “Is Dylan severely unwell?”, to which Dylan’s dad said “yes”. But Mr Brown told the inquest that the call handler had mistakenly recorded the answer as “no”, thereby not triggering an immediate referral for an ambulance.

Despite that, after asking all of the required questions, the call handler and the algorithm reach the conclusion that Dylan should have been taken immediately to A&E.

However, a nurse that assessed that decision chose to downgrade that advice and instead recommend a full assessment by a clinician, which would be expected to call Mr Cope back within another 2 hours.

During the inquest, the court heard that this happened because the call handler did not relay that Mr Cope had said yes to severely unwell or that he had told the call handler that Dylan could not physically get to hospital without assistance, due to the severity of his symptoms.

The court heard that the transcript of the call shows Mr Cope also informed the call handler about Dylan having a temperate and a rash on his legs.

“Regrettably the call handler recorded “no” to the question about whether there was a rash”, Mr Brown said, “That was another opportunity missed”.

The inquest heard that that particular call handler was absent from work on sick leave for a period of time after the incident and then she left the service.

Mr Brown said the service in Wales usually receives around 4,000 calls per day on weekends, but on the day Mr Cope rang about Dylan, he was one of around 9,000 calls. Mr Brown said it was an “incredibly stressful” time for call handling staff.

Asked by the Coroner, Miss Saunders, if changes have been made since the incident, Mr Brown said:

“Considerable. Firstly the system has changed… It is now modern and fit for purpose. All of the algorithms have been redesigned and clinically assured. We see relatively few cases of severe harm, so we have retrospectively tested the new algorithms against those cases, including that of Dylan’s”.

Mr Brown accepted the answering time for Mr Cope was “not acceptable” and said all call handlers and clinicians have been retrained to spot severely unwell children.

Asked by the lawyer asking questions on behalf of Dylans’s family whether there needs to be more safeguards in place to stop calls being downgraded, Mr Brown said the system was “inherently human” and you cannot remove the risk of an error of judgement.

“I am desperately sorry that this was one of those occasions”.

While his parents were waiting for a call back from a doctor, Dylan changed from comfortably watching TV to writhing around on the sofa with his legs beginning to mottle. This is where a net or web-like pattern forms on the skin, usually caused when there is a lack of blood flow.

The devastating loss to Dylan’s family

After racing him to hospital, Dylan was eventually operated on and placed into intensive care at the University Hospital of Wales in Cardiff.

Dylan's father wrote about his family's harrowing experience in his witness statement.

"We were called in to say our goodbyes to Dylan which we did, kissing him and telling him to think of good things and that we love him. The doctors assured us that he was heavily sedated, but studies show he may well be able to hear us. Dylan continued to be in a critical condition but was stabilised.

It was eventually decided that Dylan’s suffering was only being prolonged and with no prospect of reviving him, the decision was taken to gradually take him off life support.

"Corinne and I read to Dylan his final chapter of ‘How to Train Your Dragon" whilst we stroked his hair.

"We held his hand and told him that he is so very loved and reminded him of our best memories with him and that we were so very sorry he had to go through this, but that we were immensely proud of him for being so very strong but if he needs to drift away, he can do what he needs to do."

Dylan died on Wednesday 14th December 2022. The official cause of death was confirmed as septic shock with multi organ dysfunction caused by a perforated appendix.

Mr Cope’s statement said he and Dylan’s mother felt as though staff in the Cardiff hospital had “left no stone unturned” and praised their compassion throughout.

“Since Dylan’s death, our lives have become unrecognisable”, Mr Cope wrote in his witness statement.

“We are filled with grief and shock that our little boy was taken from us so soon. We strongly feel that his death was so avoidable if only different, reasonable, and expected decisions had been made.

"As a family, Corinne and I are struggling to come to terms with Dylan’s tragic and sudden death. His loss has left us numb and in utter shock. The death of someone you love is always sad, the death of your beloved young child who was previously so healthy and happy is indescribable.

"The tragic way in which Dylan died is something that will haunt us for the rest of our lives, particularly given that we believe it was entirely avoidable.

Could this happen again?

The inquest heard that all children who are discharged from the emergency assessment unit at the Grange Hospital are now given leaflets about sepsis, which include a QR code for the Sepsis Trust after the campaigning done by Dylan's parents for more awareness.

A spokesman for Aneurin Bevan University Health Board said:

“We are truly heartbroken and our thoughts and deepest sympathies remain with Dylan’s parents and his whole family. No parent should have to go through losing a child in such circumstances. We are all truly devastated.

“The Health Board has undertaken a detailed investigation into the circumstances leading to Dylan's death and sought independent clinical opinion to support its investigation. Our findings, actions and learning have been shared openly with the family, their representative, and with the Senior Coroner for Gwent.

“Senior members of the Health Board have met with the family in person to apologise for the tragic circumstances leading to the loss of their beloved son. The Health Board fully recognise that no apology will ever make up for the pain and suffering the family have experienced in losing Dylan.

“Dylan’s tragic death was as a result of an organisational system failure that occurred in a department whilst under extreme pressure with twice the number of patients normally attending and was not attributable to any individual member of staff.

“The Health Board would like to acknowledge the important and valued contributions from Dylan’s parents at such a difficult time to improve the way we undertake patient safety investigations and we are extremely grateful to them. We are working with Dylan’s parents to further raise awareness of the signs and symptoms of Sepsis and we will continue to work closely with them on this.

“The Health Board takes full responsibility for what happened to Dylan. We are deeply sorry and remain fully committed to supporting the family in any way we can.”

Liam Williams, Executive Director of Quality and Nursing at the Welsh Ambulance Service, said: “Our thoughts and condolences remain with Dylan’s family through what has been a very difficult time.

“We accept the findings of the coroner, and we thank them for the opportunity to share what we are doing differently.

“Once again, our thoughts and condolences remain with Dylan’s family, and we continue to make ourselves available should they have any further questions.”

The Welsh Ambulance Service said it's 111 call system is now "modern and fit for purpose".

Peter Brown said: "All of the algorithms have been redesigned and clinically assured. We see relatively few cases of severe harm, so we have retrospectively tested the new algorithms against those cases, including that of Dylan's.

"There are now five points as a minimum for a call handler that should pick out of a child is severely unwell. It doesn’t rule out a similar situation but it makes it less likely. All call handlers and clinicians have been retrained to spot severely unwell children.

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