THE parents of a baby boy who was born with severe health problems – including a life-threatening heart condition – say their lives "have been turned upside down".
Evan Swann's family has maintained a round-the-clock bedside vigil since he was born last Friday, with the child undergoing surgery just hours later.
His father – North Antrim Ulster Unionist MLA Robin Swann (below) – said he and wife Jenny have been trying to cope with the contrasting emotions of joy at the birth of their second child – and the heartbreaking news of his complex health problems.
Scans on the baby prior to birth suggested Evan had a serious heart defect and the couple were taken to the Royal Victoria Hospital in Belfast where Mrs Swann gave birth.
The tot was subsequently diagnosed with atrioventricular septal defect which affects blood flow to the heart. Evan will require major surgery in the coming months.
He has already undergone an operation to remove part of his bowel, which took place on Saturday, and has also been diagnosed with kidney failure.
Evan has been under constant observation in the hospital's intensive care unit.
Mr Swann, from Kells, outside Ballymena, said his family's plight has prompted him to urge Health Minister Edwin Poots to reconsider any plans to scrap paediatric heart services here.
"There is nothing that motivates a parent more than a threat to their child, nor is there no more happy an occasion than the discovery that a baby is due," Mr Swann said.
"But when you mix the two emotions together, and add further external pressures, your life gets put on hold as your world is turned upside down.
"That is the only way I can describe the feelings when we were told we were expecting a baby, only to be told by doctors that the initial scans suggested the child had a serious heart defect, and we would be transferred to the Royal Victoria Hospital." A public consultation on the future of children's heart surgery ended in December.
Mr Poots is expected to announce his decision within the next fortnight.
Mr Swann said any proposals to cut the specialist services would mean children's lives being put at risk by having to seek treatment elsewhere.
He said rather than discussing whether to retain services, the existing facilities should be enhanced.
"I have called on the minister to halt the current consultation process, as the Children's Heartbeat Trust have revealed through their work that this consultation has not been endorsed by a number of the professional bodies in Northern Ireland."
Executive officer of the trust, Sarah Quinlan, said the charity is opposed to any changes at the hospital, which she said would have a "devastating" impact on patients and their families.
The body provides support to parents and families of children with heart disease in Northern Ireland.
"If this safe service closed, over 200 patients and families each year would have to travel to a centre outside of Northern Ireland," Ms Quinlan said.
"Children treated in Belfast enjoy extremely high standards of care, endorsed by a Royal College of Surgeons report only last July and managed by clinicians and experts who work closely with colleagues in Dublin and Britain."
Last year a review of children's congenital heart services in Northern Ireland found that it is no longer sustainable. About 90 heart surgery operations are carried out each year by the Belfast Health Trust. Health Minister Edwin Poots said all options should be considered, including an all-Ireland service. If that is not suitable, children will have to travel to England if facilities here are scrapped.