The grieving parents of Tiarna Middleton, the baby fitted with a mechanical heart who died this week want the transplant laws to be changed.
Children's heart surgery is set to resume at Leeds General Infirmary after days of uncertainty over its future.
A health expert from the North East says an argument about the future of children's heart services in our region has wasted time and money.
The mum of Chanel Murrish, who had open heart surgery at The Freeman Hospital just minutes after being born, describes her baby's personality:
Ten week old Chanel Murrish, from County Durham, had open heart surgery just minutes after being born at The Freeman Hospital in Newcastle. She's still being treated there and her mum has praised the staff.
Fay Murrish's daughter Chanel is just ten weeks old but already has had seven medical procedures because of a rare heart condition. She had open heart surgery just minutes after being born.
Mortality rates for all children's heart surgery centres have been released following the temporary suspension of operations at the Leeds unit. It comes following concerns about death rates at Leeds which emerged after Newcastle's Freeman Hospital was chosen as the designated heart surgery centre.
The Freeman was selected over Leeds General Infirmary following the biggest consultation the NHS has ever carried out. However that decision is now on hold after campaigners in Leeds won a high court battle which upheld concerns that the rating system used during the decision process was flawed.
Now, data released by NHS England shows that none of the 10 centres in England breached thresholds for child heart surgery deaths, however Leeds General Infirmary was very close to the alert level. Operations resumed at the unit on Wednesday following a safety review.
Children's heart surgery at Leeds General Infirmary resumed today, less than two weeks after all operations were abruptly suspended.
Concern had been raised over figures showing a high death rate at the unit but that data was discredited.
Now children are being operated on once again, as Damon Green reports.
The CEO of the Leeds Teaching Hospital NHS Trust has spoken out to reassure families about the children's heart surgery unit's reputation.
– Maggie Boyle, CEO Leeds Teaching Hospital NHS Trust
The unit is categorically safe and is as safe as any unit in the country."
Deputy Medical Director for NHS England, Dr Mike Bewick, has told a health scrutiny committee, "to not do things is very easy. We are always criticised for not taking action and we thought there were potential dangers. NHS England should be applauded for making a swift decision."
He added that a rapid review of the unit over the weekend found it to be safe. He said cardiologists and staff are dedicated and are doing what they believe in.
Dr Mike Bewick, the deputy medical director of NHS England, has attended a meeting with the Yorkshire and the Humber health scrutiny committee to discuss the events surrounding the suspension of surgery at the Leeds children's heart surgery unit.
Almost two weeks after surgery was suspended at the region's only children's heart unit over concerns about death rates, services will resume today. The region's health scrutiny committee is also meeting this morning and has invited key players in that decision-making process.
NHS England said there will be a phased restart to surgery at Leeds General Infirmary
The campaign group Save our Surgery, which wants to keep children's heart surgery going at Leeds General Infirmary, is demanding an investigation into the suspension of operations at the unit.
“Given that the suspension potentially put patients at risk, has caused huge inconvenience and added stress to the families of children who have had to be treated elsewhere, and created unnecessary worries and fears amongst previous patients’ families, questions must be asked as to why operations were suspended in the first place.
“We fear it’s no coincidence that the action was taken on the day following the High Court verdict quashing the decision that Leeds should stop surgery, as part of the Safe and Sustainable review.”
“Most irresponsible of all was the use of mortality data that had not been verified. Its use by Professor Sir Roger Boyle was roundly attacked by the body compiling it and also by the British Congenital Cardiac Association. Following proper examination and verification by CCAD and Nicor, the pediatric cardiac surgery mortality figures have been certified as being within the normal accepted range.
– Sharon Cheng, Save Our Surgery
“We hope those who made this decision will now be held to account. This whole exercise has been NHS politics at its worst. We call on the Secretary of State to launch an urgent inquiry into these events and what led them to happen. We also want him to make a decision following the Independent Reconfiguration Panel report which will genuinely put the interests of patients first. In our view, this means keeping both the Leeds and the Newcastle units open.”