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Mother describes baby's final hours
A devastated mother wept as she described the moment her premature baby died hours after being removed from a ventilator.
Rohan Rhodes was born 15 weeks early at Singleton Hospital in Swansea, Wales, on August 27, 2012.
He was resuscitated after birth and put on a ventilator on the hospital's neonatal ward, where doctors believed he was "doing well".
Rohan was then moved to St Michael's Hospital in Bristol - in the same trust as Bristol Children's Hospital - to be assessed for an operation to close a heart duct which was open.
But just 24 hours after arriving, the decision was made to remove Rohan from the ventilator and his condition deteriorated rapidly.
He was 36 days old when he died.
Mother Bronwyn told an inquest a doctor later apologised to her and husband Alex after their son was removed from the machine and given breathing mask treatment Continuous Positive Airway Pressure (CPAP) instead.
Practising vet Mrs Rhodes said: "During the time Vel (Dr Velmurugan Ramalingam) was working on Rohan he apologised repeatedly.
"He said: 'Don't worry, we will take care of him'.
"I was repeatedly crying and shaking my head: 'But you haven't. You haven't taken care of my baby. He came here in good health for a procedure'.
"Vel kept saying he was so sorry."
She added: "There were other babies being ignored while..." before being stopped from continuing by the coroner.
Flax Bourton Coroner's Court heard Mrs Rhodes, of Narbeth, Pembrokeshire, was admitted to Withybush Hospital in west Wales on August 26, 2012.
She was just 25 weeks pregnant when Rohan was born in Singleton Hospital's Special Care Baby Unit the following day.
Dr Geraint Morris, a consultant paediatrician on the unit, described Rohan as being "extremely premature" and requiring ventilation.
Mrs Rhodes said: "The medical team tried to wean him off the ventilator from day one.
"He was a very healthy baby considering. He digested his food and consistently put on weight and grew. He was a very active baby."
The consultants believed it was impossible to wean Rohan off the ventilator any further, Mrs Rhodes said.
A medical team from Singleton transferred Rohan to St Michael's Hospital, where he was to be assessed for surgery on his open heart duct.
He arrived at the unit at 1.55pm on September 28. Mrs Rhodes said she quickly became concerned about the standard of care her baby received.
She told Avon coroner Maria E Voisin a nurse did not wear gloves when handling Rohan's feeding tube.
The following day, Mrs Rhodes noticed her son looked exhausted and his oxygen dependency had increased.
She also told the inquest that despite this, Rohan's consultant Dr David Harding told her she had a "healthy little boy" at 10.30am
Mrs Rhodes added: "By 1pm, I was getting concerned Rohan wasn't settling into his new unit. He was always wide awake, looking around and fidgeting - which he normally didn't do.
"At that moment, a lady in blue scrubs came over and said she needed to take a blood gas reading from Rohan.
"As I was walking down the corridor this lady said: 'Right young man, you won't be needing that ventilator with such a good gas'.
"I assumed she was joking."
After leaving the hospital, the parents returned at 6pm and were stunned to discover Rohan had been removed from the ventilator and placed on CPAP.
The inquest also heard evidence that during a handover meeting on September 29, a team of leading doctors said they had no plans to stop ventilation.
"There were no plans to extubate Rohan," he said.
Meanwhile, blacksmith Mr Rhodes said in a statement he had asked a nurse - who had "poor English" - whether his son, who appeared blank, had been sedated and given morphine.
"She said: no more feed," Mr Rhodes added. "She looked surprised as she realised what we were saying."
Mrs Rhodes said the couple were asked whether they wanted to change Rohan's nappy but as they did so, his heart rate began falling rapidly.
"His heart rate was in the 20s at one point," Mrs Rhodes said. "We were terrified and were watching all this in horror.
"He was so pale and lifeless during this time, we were terrified we were losing him."
A decision was made to put Rohan back on the ventilator and after the procedure, at 6.40pm, Mrs Rhodes noticed an improvement.
"We sat with Rohan and I started looking at his chart and noticed his heart rate had been steadily decreasing by 10 every hour since he had been on CPAP," she said.
Meanwhile, Mr Rhodes checked his son's temperature and was horrified to see it had dropped to 33.6 degrees celsius - almost three degrees below the normal level.
It was later realised a humidifier had been left off when Rohan was reintubated.
"He had been having cold dry gases for about an hour and a half," Mrs Rhodes added.
She also said after feeding Rohan while her husband changed his nappy, they both noticed the child's stomach was swollen. Slightly after this, Rohan's saturation levels began to fall.
At 1am the following day, Rohan appeared to stabilise, so his parents left to get some sleep.
"We received a phone call at 6am asking us to come in as Rohan had not had a good night," Mrs Rhodes said.
The couple were told Rohan urgently required surgery for a suspected perforation of his small intestine.
Mrs Rhodes said: "I said I was not happy Rohan had been extubated at the time. Dr Harding told us there was no relationship with what was happening with Rohan to that."
However, Rohan was not stable enough to have the surgery.
"Rohan's heart rate started to decrease," Mrs Rhodes wept. "Rohan continued to slip away from us.
"I asked them to stop compressions but they were not able to remove all of the lines so that he could pass in my arms.
"So he died in his incubator, with petechia and haemorrhage all over him."
A post-mortem examination found Rohan had developed necrotising enterocolitis, or NEC - a serious bowel inflammation usually found in premature babies.
Dr Michael Ashcroft, consultant paediatrician at Great Ormond Street Hospital, carried out a post-mortem examination on October 4, 2012.
He recorded the primary causes of death as acute peritonitis and pneumonia.
Dr Ashcroft gave secondary factors as premature birth and NEC.
Nurse Amanda Dallorzo, who qualified in 1996, said she had "autonomously" taken the decision to remove Rohan from the ventilator.
Handover notes told medical staff to "continue feeding and wean ventilation as tolerated", the advance neonatal nurse said.
"That meant if the blood gas were suitable you would reduce the level of ventilation," she said.
"At no point did anybody say that this child was to remain ventilated, nor conversely that this child was to be extubated.
"Neither decision was conveyed to me.
"At approximately 1pm, I took a decision to reduce the rate the ventilator was breathing for him.
"Then, at 1.47, I took a capillary gas to check that hadn't had an effect on him.
"It wasn't until 4pm that I extubated Rohan to a bubble CPAP.
"It was my intention to do a blood gas one hour from extubating him but I was delayed because I was called to perform other duties.
"At around 6pm I was having a cup of coffee, I was called back to the room that Rohan was in."
She said Rohan had become bradycardic when his parents were caring for him and she reintubated him.
During questioning by the coroner, the nurses defended her decision to remove Rohan from the ventilator.
"The only plan was to wean Rohan off the ventilator as tolerated, the logical conclusion of such a plan was extubation," she said.
"Nurse practitioners, working as I work, we work autonomously.
"That was well within my remit. It was not an unreasonable thing to do."
The nurse said she was not aware of a plan for Rohan to have surgery on his heart duct in the following days, despite notes by colleagues stating this before the extubation.
"Had I known that the intention was surgery, I wouldn't have extubated," she said.
Speaking after the inquest, which will resume tomorrow, Rohan's parents said they hoped lessons would be learned from their son's death.
Mrs Rhodes said: "We felt that they did admit to some failings. There were some things that we didn't know.
"We are hoping for serious changes and we are hopeful that they are changing things so that other babies will never suffer the way Rohan suffered because he suffered a great deal of pain before he died.
"That's the part that we want to try and make sure doesn't happen again."
Mr Rhodes added: "They have a lot to learn from this I think - I hope."