The inquest into the death of Iris was held on Monday 13th and Tuesday 14th November 2017 at Essex Coroner’s Court.

Iris died on 2 December 2016 at Colchester Hospital as a result of her unrepaired heart defect (complete atrioventricular septal defect). Her parents Hannah and Ben Day raised concerns about the care given to Iris at Colchester Hospital on the day of her death.

Some of the failures in care identified by the Coroner in her conclusion included failure to recognise a deteriorating patient and undertake necessary tests, a failure to prioritise Iris, failure to cannulate a vulnerable patient, failure to communicate with the Evelina Children’s Hospital and a failure to call back the family to the hospital at the correct time.

Iris was born with Down's syndrome and an atrio-ventricular septal defect (AVSD), which was discovered when her mother Hannah was 36 weeks’ pregnant. Her parents were told she would need surgery to repair the AVSD when she was around three months’ old and that this would be arranged under the care of Evelina London Children’s Hospital, which is part of Guy’s and St Thomas’ NHS Foundation Trust.

The inquest heard that Iris was meant to be added to the waiting list for the AVSD repair in September, when she was three months’ old, however her parents were told that Iris had not in fact been added to the waiting list for the operation and therefore it would not take place until November.

On 1 November Iris developed a viral infection, Hannah took her to see her GP who gave her amoxicillin but Hannah grew more concerned and took her to Colchester Hospital that night. A cannula had to be inserted into her scalp to provide fluids and blood tests were taken to rule out meningitis. Iris had a rapid heart rate, high temperate and her x-rays showed pneumonia. She was transferred to the children’s intensive care unit at Evelina the next day and stayed there until 13 November.

After Iris was discharged she was given a new date for surgery of 25 November, with a pre-admission appointment the day before. However, when Hannah took Iris to the appointment on the 24th she was told the surgery would have to be cancelled as there was no bed available in the intensive care ward. While they were on their way home to Great Braxted, in Essex, the hospital called to say that there was now a 50 per cent chance the surgery could go ahead on the 25th, however, there was a much greater chance of it going ahead the following week on the 30th November. As they had already left the hospital and were almost home they decided to wait until the 30th to avoid putting Iris through any more disruption than necessary.

Hannah travelled to Evelina hospital on the 29th November for Iris’s pre-surgery checks but the hospital was not expecting her. The nurse did some checks but there was no doctor available to review Iris. At 5pm that evening Iris’s surgery was cancelled again due to an emergency surgery which needed to be done the next day.

Hannah and Ben told the inquest they were becoming increasingly worried as it was now long past the original date for Iris’s surgery and Iris had been sent home without being checked to make sure she was ok. The surgery was finally booked for 9 December.

The Coroner recognised in her conclusion that there had been delays in Iris’s surgery and less than ideal communication with her parents. She also commented that delays and cancellations of surgery were a feature across the whole of the South of England.

Hannah and Ben, Iris’s father, took her to A&E at Colchester Hospital at around 12.30am on 2 December after noticing her breathing had become laboured. Doctors were concerned she may have a respiratory infection and she was moved to the children’s ward at around 2am.

Hannah and Ben stayed with Iris overnight. They were aware from her previous admissions that it was important that the pressure on Iris’s heart be limited as much as possible and therefore being sedated and ventilated was important. They raised this with one of the doctors who said that as Iris had a cannula in place it would only take a couple of minutes for this to be done and that he was on alert for this to be necessary. Ben and Hannah were also keen that the Evelina hospital were informed of Iris’s condition in case they wanted to take over her care as a specialist children’s hospital.

Sometime that morning the cannula had been removed from Iris’s hand and Hannah raised her concerns about this to a nurse as she knew that without this it could take longer to sedate and ventilate Iris if needed. She was reassured by a nurse that the cannula would be put back in and they were also told that Evelina had been made aware of Iris’s condition and were not concerned.

That afternoon Hannah and Ben were told that Iris was settled and improving and advised to go home and collect her belongings. However, while they were away from the hospital they received an urgent call to return to the hospital but when they arrived Iris has passed away.

Ben was told by a doctor that Iris had suddenly started deteriorating so they tried to insert a cannula but Iris went into cardiac arrest.

Iris’s parents Ben, 41, and Hannah, 29, said in a statement following the inquest:

“We feel that the majority of NHS staff that came into contact with Iris in her short life let her and her family down in the worst way possible.

“As her parents we were made to feel like an annoyance to the NHS on the day she died and on every day since she was diagnosed with Down’s Syndrome at 36 weeks’ gestation.

“We believe that it wasn’t one incident that led to Iris’s death but a catalogue of errors.”

Kirsten Wall, clinical negligence solicitor at law firm Leigh Day, said:

“To lose a child in any circumstances is devastating but to lose a child knowing that the hospital failed to deliver necessary medical treatment causes even more pain and destress to grieving parents.

“Colchester Hospital missed a number of chances to care for Iris and this had severe and irreparable consequences. I am pleased that Colchester have accepted some changes in their practice are necessary and I hope no other family will have to experience what Mr and Mrs Day have gone through and are still going through with the loss of Iris.”