• Rohan Rhodes was born 14 weeks premature and needed heart surgery
• Was transferred to St Michael's Hospital, Bristol on a ventilator
  
• Nurse looking after boy allegedly turned off machine without permission
• Hospital is in the same trust as scandal-hit Bristol Children's Hospital
• High-level investigation into facility has been ordered by director of NHS
  

By Lizzie Edmonds

PUBLISHED: 09:18 GMT, 23 February 2014 | UPDATED: 11:19 GMT, 23 February 2014

A premature baby boy died when a nurse removed him from a ventilator without his parent's permission while he was receiving treatment at a scandal-hit hospital trust.

Rohan Rhodes was born 14 weeks prematurely at Singleton Hospital in Swansea in August 2012.

Although he was very premature, he got through the critical first few weeks and was doing well in the hospital's neo-natal intensive care unit.

However, a heart duct which usually closes at birth remained open. Doctors said he needed to go to Bristol, which has a specialist children's heart surgery centre, for an operation.

Five weeks after birth he was transferred to St Michael's Hospital - which is in the same trust as Bristol Children's Hospital.

As he was so premature, he needed a ventilator to help fill his lungs with oxygen.

Rohan's parents allege a nurse practitioner looking after their son - who had no authority to withdraw the life-supporting device - turned off the ventilator.

After being taken off the ventilator Rohan developed necrotising enterocolitis - or NEC. This potentially fatal condition is common in premature babies, especially those with the heart problems.

Rohan had a series of cardiac arrests and tragically died the following day.

It is understood the nurse who took Rohan off his ventilator received further training following her action - but remains working at the hospital.

She has not been disciplined or reported to the Nursing and Midwifery Council which has the power to hold a hearing and remove her from the nursing register, it is thought.

A Bristol inquest will hear on Monday the circumstances that led to Rohan's death.

The hospital where he died is part of the same trust as Bristol Children Hospital - where the deaths of child heart surgery patients are to be the subject of an independent review, NHS Medical Director, Sir Bruce Keogh, said last week.

This week the case of Lacey Marie Poton, four months, who died of a cardiac arrest shortly after she was discharged from the hospital emerged. It is alleged she also received poor care from South Western Ambulance Service.

Rohan's parents Alex Rhodes and Bronwyn Vincent, who live in Narberth, Pembrokeshire, Wales, returned from a rest break to find their son had been taken off the device.

They said: 'We have no idea why the nurse did what she did - but we are convinced it cost our son his life.

'Nurses can only take a baby off a ventilator under a doctor's direction and we know there wasn't a doctor's decision to do this.'

Before he could be put back on the machine he suffered a cardiac arrest.

Rohan was resuscitated by intensive care medics - but suffered a second heart attack the next day and lost his fight for life.

Ms Vincent said: 'Our little boy was doing so well. We are still trying to understand why this nurse did what she did. She had no authority. What she did is inexcusable. I was in tears.

'The doctors said he wasn't ready to come of the ventilator and he was going to stay on it until he had his operation.'

'Rowan was very premature at 25 weeks, but his lungs were holding up well.

'He needed a relatively safe operation to close a heart duct that should normally shut at birth. That would have helped his breathing improve.

'When we arrived at St Michael's his life wasn't in danger even though he was in intensive care.

'We were told his prospects of coming off the ventilator were good following the heart surgery.

'We have no idea why the nurse did what she did - but we are convinced it cost our son his life.

'Nurses can only take a baby off a ventilator under a doctor's direction and we know there wasn't a doctor's decision to do this.'

After being taken off the ventilator Rohan developed NEC. The couple believe the lack off oxygen when he was taken off the ventilator triggered the condition.

Ms Vincent, 34, alleges Rohan was left in 'agonising pain' from the condition until doctors finally gave him pain relief in his final hours.

The vet said: 'The end was terrible. His gut burst, he had peritonitis and blood poisoning and his heart just couldn't cope.

Mr Rhodes, a 37-year-old blacksmith, said: 'We have had no explanation for this nurse's actions.

'The doctors had agreed that he should stay on ventilation right up until he had his surgery. They didn't want to alter anything as he was doing so well.'

The family's Laurence Vick, of Michelmores Solicitors in Exeter, said: 'There is likely to be legal action action over Rohan's death following his inquest.'

Robert Woolley, Chief Executive of University Hospitals Bristol NHS Foundation Trust said: 'We would like to offer our sincere condolences to the Rhodes family for the loss of their son, Rohan.

'The coroner will conduct a thorough and independent inquiry into the death of this child and we are committed to working with her to provide all the information she needs to do this.

'It would not be appropriate for us to comment further until the inquest has concluded.'

A high level investigation is to be carried out the the Bristol Royal Hospital for Children - the same trust as St Michael's Hospital - follow numerous allegations of poor care and neglect.

Another case was that of four-month-old Lacey Maruie Poton - one of several children to die following surgery at Bristol Royal Hospital for Children.

She suffered cardiac arrest after being discharged from the facility.

It is now alleged the child received poor treatment at the hands of the South Western Ambulance Service - one of the largest in the country.

An internal report released today lists a series of mistakes made by the service - including the incident not being treated as an emergency and crew failing to take a proper medical history of the child in to account.