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NHS staff let parents of Down’s Syndrome girl down

Six-month-old Iris Day, who was born with a heart defect and Down’s Syndrome

The parents of a baby girl who died while waiting for a delayed heart operation told an inquest they had been let down by the NHS ‘in the worst way possible’.

Six-month-old Iris Day, who was born with a heart defect and Down’s Syndrome, died after her operation was scheduled and cancelled three times.

Her mother Hannah Day, 29, told an inquest in Chelmsford that she and husband Ben, 41, were not at their daughter’s bedside at Colchester Hospital when she died as they were given ‘false reassurance’ about her condition and had gone home to fetch belongings.

Essex’s assistant coroner Jolanta McKenzie, recording a narrative conclusion after a two-day hearing, said Iris had been listed for surgery at the Evelina London Children’s Hospital, but this was not undertaken and she was admitted to Colchester Hospital while in ‘respiratory distress’.

Iris’s condition was not identified by treating clinicians, her condition worsened and she died.

‘There were failings in the care provided by Colchester Hospital,’ said Dr McKenzie.

Iris, whose family live in Great Braxted, Essex, died on December 2 2016.

Her heart operation had been scheduled and cancelled three times in November 2016 at Evelina London Children’s Hospital, which is part of Guy’s and St Thomas’ NHS Foundation Trust.

The first cancellation was because Iris had a viral infection and the risks of surgery were too high, the second time was due to a lack of beds, and the third attempt was also cancelled as another ill child was prioritised.

Iris had a fourth surgery date of December 9 2016, a week after her death.

Her parents had taken her home as they awaited this scheduled operation, but took her to Colchester Hospital when she developed breathing problems on December 2.

A narrative conclusion was recorded during the inquest at Chelmsford Coroner's Court (pictured) 

A narrative conclusion was recorded during the inquest at Chelmsford Coroner’s Court (pictured) 

Her condition deteriorated and she died as a result of her unrepaired heart defect – complete atrioventricular septal defect.

Mrs Day said that at Colchester Hospital they were given ‘really quite false reassurance that Iris was stable’ which had led them to go home to collect some belongings for Iris.

She told the inquest they later received a call from the hospital informing them that Iris had deteriorated, and when they got back to the hospital they found her lifeless.

‘From a human point of view, the impression we’ve got is we haven’t felt there’s been a whole lot of compassion from staff,’ Mrs Day said.

‘Iris, to them, might have been another patient but she was absolutely our whole world.

‘To know that she was let down, that we were wrongly reassured, that because of that I wasn’t able to be with my baby when she passed away or console her when she was inconsolable, to know that in those final moments she would have been uncomfortable, she would have been sad and she wouldn’t have had her mummy or daddy there with her.

‘That’s something I will never forgive them for – for taking that away from us.’

She said she became pregnant by private IVF treatment and had been ‘very excited about the different journey we would have with Iris and her condition’ of Down’s Syndrome.

Insurance broker Mr Day said: ‘I genuinely feel the majority of NHS staff who came into contact with Iris in her short life let her and her family down in the worst possible way.’

He continued: ‘My advice to any parent with an ill child is to be that annoying squeaky wheel – as the only caring advocate of that child is the parent.’

Her parents say they have been let down by the NHS 'in the worst possible way'

Her parents say they have been let down by the NHS ‘in the worst possible way’

Dr Kalyaan Devarajan, a paediatric consultant at Colchester Hospital, said an investigation identified ‘a series of deficiencies in certain aspects of care resulting in (Iris’s) sad demise’ at Colchester Hospital.

These include a failure to contact the Evelina Hospital, and a failure to recognise that Iris’s increasing heart rate was a significant deterioration. 

Mrs Day said she became pregnant by private IVF treatment and she and husband Ben were ‘very excited about the different journey we would have with Iris and her condition’ of Down’s Syndrome.

She said that at Colchester Hospital they were given ‘really quite false reassurance that Iris was stable’ and were wrongly told that specialists at the Evelina Hospital had been contacted.

She and her husband went home to collect some belongings for Iris after she was reassured Iris was stable and that they would be contacted if there was any change in her condition, she said.

She told the inquest they later received a call from the hospital informing them that Iris had deteriorated and asking them to return.

When they got back they found Iris’s bed surrounded by medical staff attempting CPR, and found Iris lifeless.

‘From a human point of view, the impression we’ve got is we haven’t felt there’s been a whole lot of compassion from staff,’ Mrs Day said.

‘Iris, to them, might have been another patient but she was absolutely our whole world.

‘To know that she was let down, that we were wrongly reassured, that because of that I wasn’t able to be with my baby when she passed away or console her when she was inconsolable, to know that in those final moments she would have been uncomfortable, she would have been sad and she wouldn’t have had her mummy or daddy there with her.

‘That’s something I will never forgive them for – for taking that away from us.’

Mr Day said: ‘I genuinely feel the majority of NHS staff who came into contact with Iris in her short life let her and her family down in the worst possible way.’

He continued: ‘My advice to any parent with an ill child is to be that annoying squeaky wheel – as the only caring advocate of that child is the parent.’

McKenzie said cancelled operations due a lack of intensive care beds ‘is sadly a feature’ of hospitals across the UK.

Giving a narrative conclusion, she said: ‘There were failings in the care provided by Colchester.

‘There was a failure to recognise the deteriorating patient by nursing and medical staff and to undertake appropriate tests, that being blood gases as per the patient plans; a failure to escalate matters appropriately or to call for help… a failure to escalate difficult in cannulation; a failure to prioritise cannulation in a vulnerable patient and a failure to communicate with Evelina, the tertiary centre, with a missed opportunity for potential transfer and a failure to call back the family at the right time when Iris’s condition deteriorated so they could be there to comfort their daughter.

‘We have heard from the expert that the impact of the missed opportunity on the outcome is impossible to say.’

Asked if they were considering further legal action against the NHS trust at the court steps, Hannah said: ‘We are in discussion for it.’

Ben Day, read from a statement, saying: ‘The six months we had with Iris showed my wife and I that in today’s NHS the only true advocate for the child is the parents.

‘This wasn’t one incident that let to Iris’s death it was a catalogue of incidents.’ 

Read more at DailyMail.co.uk


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