A family has shared their heartache following a report that detailed numerous failures surrounding the death of their five-year-old son at a hospital, where his treatment was criticized as being ‘chaotic and ineffective’.

According to the family, staff were heard laughing as young Ayaan Rashid, who suffered from a rare genetic disorder, was taken off life support at Sheffield Children’s Hospital.

Haroon Rashid, Ayaan’s father, claimed that medical staff ignored 17 requests from nurses to transfer his son to intensive care, and that signs of distress, such as blood around Ayaan’s lips and on his feeding tube, were overlooked.

Despite eventually being moved to the ICU, Ayaan tragically passed away in distress after experiencing severe breathing difficulties.

The family received an independent report into the incident, which recommended 22 procedural improvements. Among these suggestions were four national-level changes, particularly related to patient assessments.

The report pointed out several issues, including ‘chaotic and ineffective’ handovers on the non-emergency ward, a ‘lack of oversight’ at the hospital, inadequate understanding of risk management, and poor adherence to pediatric observation protocols.

Mr Rashid said: ‘We want lessons to be learned so this tragedy does not happen to anyone else.’

He said he suffered not only the heartache of losing Ayaan but also ‘hostility’ from hospital bosses during the complaints process.

Ayaan Rashid had become severely unwell due to  HACE1  but could have survived, family say

Mr Rashid also criticised Niche, the firm brought in to investigate the tragedy, accusing them of being ‘disrespectful’ and talking to hospital representatives far more than his family.

Mr Rashid, and his wife Fakhra, 48, already had three daughters when Ayaan was born on 13 September 2017.

Their youngest daughter Aroob, now 15, had been born with HACE1, a neurodevelopmental disorder.

When Ayaan reached six months, his parents recognised the same symptoms as his elder sister and he was also diagnosed with HACE1.

Haroon, who worked for Lloyd’s Bank but quit after 20 years to care for Ayaan and is now a taxi driver, said the family were prepared for him being confined to a wheelchair like Aroob and require extra help.

But, speaking from the family home in Sheffield, South Yorkshire, Mr Rashid said: ‘Ayaan would still be alive today if he’d been given proper medical attention.’

The family was well aware of the health risks from HACE 1 and, when Ayaab was struggling to breathe on March 5, 2023, they drove him straight to Sheffield Children’s Hospital, as they had done several times previously.

As in the past, they expected Ayaan to be given an intensive care bed, but instead, he was placed on a general children’s ward.

Nurses asked 17 times for Ayaan to be transferred to the intensive care unit but he was not moved there until three days after admission, by which time it was too late, his father believes.

Grieving father Haroon Rashid wants lessons to be learned to ensure other children survive

Ayaan pictured in happier times with his campaigning sister Aroob, who also has HACE1

Mr Rashid kept an eight-day vigil with his son, sleeping on an armchair beside his bed, until he died on 13 March.

Mr Rashid said: ‘The delay in getting the care he needed led to his death. They acknowledge all these catastrophic failings but say he was going to die anyway from HACE 1.’

He said the hospital was ‘chaotic’ with no doctor in overall charge of caring for their son, and nurses’ concerns being ignored by consultants.

He added: ‘Blood coming from a child’s mouth should be a big red flag, but it was not looked into.

‘Ayaan was scared and he was in pain. Minute by minute, he was going downhill.’

The family were warned by medical staff that Ayaan would not recover and his parents, Aroob and elder sisters Sanah, 24, and Arzoo, 19, were by his side when he died.

When Ayaan was previously admitted to hospital with breathing problems, in November 2022, he was given a bed in ICU within 12 hours.

The front room of the family home is a shrine to Ayaan – photos of his cheeky, smiling face are everywhere.

Nurses asked 17 times for Ayaan to be moved to intensive care over three-day period 

Sheffield Children’s Hospital said it is ‘fully committed’ to learning from what happened

He is remembered with fondness, especially by his campaigning elder sister who raised £100,000 for charity and has been to Westminster and the Scottish Parliament to fight for equal rights for disabled people.

He said: ‘Ayaan was full of life, like his sister. If he had not been failed by the hospital, he would still be here today, thriving, just like she is.’

Ayaan’s cause of death was recorded as pneumonia.

The Rashid family criticised investigators Niche for ‘only meeting the family once’, but having ‘countless meetings with the hospital bosses, who they were meant to be investigating’.

The Rashids were also unhappy the firm was used after they were previously criticised for its report into the death of another boy, Yusuf Nazir, who died aged five after being sent home from Rotherham Hospital with antibiotics for tonsilitis in 2022.

Yusuf’s family claimed the report was a ‘whitewash’. 

Mr Rashid was accompanied by Sheffield Central Labour MP Abtisam Mohamed at yesterday’s meeting – but he said it only lasted 30 minutes and no apology was offered.

He also accused hospital bosses of ‘prolonging the investigation process’ in the hope the family would ‘eventually just give up’.

Sheffield Children’s Hospital said it has ‘met with the family on a number of occasions and have apologised in person’.

Dr Jeff Perring, Executive Medical Director at Sheffield Children’s NHS Foundation Trust said: ‘Sheffield Children’s is fully committed to learning from all complaint investigations into the care and experience of children, young people and their families.

‘We appreciate how difficult independent reports, such as this, are for the families affected. We understand the importance of working together to ensure that the lessons learned are implemented in our everyday care’.

A Niche Health spokesperson said: ‘As a team of independent investigators, Niche were asked to surface the facts in a balanced and proportionate way using the advice of experienced and qualified clinical experts who reviewed the case.

‘We have developed a report which is critical of material aspects of the care provided and which upholds many of the family’s concerns. 

‘The final report includes four national recommendations and 18 more local recommendations for improvement that have been formally accepted by Sheffield’s Children’s Hospital; all of which are aimed to promote systemic change.’