They are letting our heart op service rot away, says family of little Daire
The family of a little boy whose life was saved by the paediatric heart team in Belfast have spoken of their concerns the review process deciding the future of the services has not been transparent enough.
Just days before the surgical team for congenital heart disease based at the Clark Clinic at the Royal Victoria Hospital for Sick Children in Belfast drops to just one surgeon, Orla McElroy (35) from Dungannon said she feared the impact will be detrimental to children born with heart defects in Northern Ireland.
Her three-year-old nephew Daire McElroy was just four months old when it was discovered he was suffering from major heart failure.
His lungs were full of fluid, his liver had tripled in size and his heart had doubled in size.
"Daire was admitted to Craigavon Area Hospital for two nights as he was too unstable to be moved to the Royal Victoria Hospital for Sick Children," Orla said.
"We didn't think he was going to make it through the night."
She said his mother Aoife (22) was left shocked after he was diagnosed via videolink with a condition called dilated cardiomyopathy and tachycardia.
"Daire was transferred after two nights to Clark Clinic, at this time his heart function was 9%. This was two days after treatment," said Orla.
"He remained there for six weeks and the standard of care was amazing.
"But cardiomyopathy is not fixable, not treatable.
"It's a very complicated disease where at any moment in time he could need a heart transplant," she said.
"If the Clark Clinic was not there Daire would not be here."
The surgical service for congenital heart disease in Belfast is currently provided by two surgeons, with support where needed from two further surgeons based at Our Lady's Hospital for Sick Children in Dublin.
Following the retirement of Professor Fred Wood next month, this will drop to one.
Orla added: "If surgery in Belfast RVH is taken away, my biggest fears are that there will be a knock-on effect on staffing and de-skilling.
"You need specialist doctors to diagnose these conditions in the first instance and Northern Ireland will not attract these professionals."
She also questioned the transparency of the review into services.
The decision to alter the service was made following a UK-wide review led by Sir Ian Kennedy.
It said although the service at the Royal Victoria was safe, because of the small number of operations being carried out it is not sustainable.
A review carried out in England by Sir Ian led to the decision to stop heart surgery at hospitals in Leeds, Leicester and London to focus at fewer, larger sites.
Orla added: "They are letting the service rot slowly."
A spokesman for the Health and Social Care Board said a "full public consultation" on the future provision of paediatric cardiac surgery in Northern Ireland took place in 2012.
"The board and Public Health Agency are working closely with the Belfast Trust and with the Department of Health to put in place arrangements to ensure that children who require paediatric cardiac surgery continue to have access to the specialist care they need and receive treatment without any undue delay."
Fears grew over the future of paediatric heart surgery services in Belfast after a 2012 UK-wide review led by Professor Sir Ian Kennedy. As a result, Health Minister Edwin Poots considered proposals which would include stopping all children's heart surgery here. This would mean seriously ill children from across Northern Ireland and their families having to travel to England or Dublin for lifesaving treatments. The review carried out in England led to the decision to stop heart surgery at hospitals in Leeds, Leicester and London to focus at fewer, larger sites. But that decision was overturned in March. A decision by Mr Poots on the service is still pending.