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Funding for a specialist children's heart unit here could be key to saving my son's life

By Victoria O'Hara

The mother of a seven-year-old boy born with half a heart has said funding is vital to develop a specialist cardiac centre for children if the life-saving services are to be strengthened in Northern Ireland.

Plans for a new children's heart centre in Belfast were unveiled by the Children's Heartbeat Trust, which said a stand-alone unit in Belfast was key for the delivery of care for the hundreds of youngsters diagnosed with life-threatening defects.

The plan was revealed as part of Heart Week, the annual awareness week for congenital heart disease, at the NI Assembly All Party Group on Congenital Heart Disease (CHD) Stormont. Among those attending the event was Julie Strain, whose son Lewis Greenaway features in the new Children's Heartbeat Trust campaign.

Lewis, a pupil at The Cope Primary School in Loughgall, Co Armagh, will appear on billboards across Northern Ireland.

He has undergone three life-saving open heart surgeries in his short life.

Around 250 children like Lewis are diagnosed with a potentially deadly heart defect every year in the province. His 33-year-old mum, from Portadown, explained she discovered her eldest son had CHD while she was pregnant.

"It was spotted during my 20-week scan and he was then diagnosed with hypoplastic left heart syndrome," she said.

"It came as a huge shock as no one is prepared to hear that news," the full-time mother added.

Within hours of being born he was flown by air ambulance to England to undergo his first open heart operation.

He is one of seven amazing children who are involved in The Ever been Heartbroken? campaign, which seeks to raise the profile of CHD.

"We have been through a hard journey," his mum said.

She added that for Lewis - a big brother to Tilly (5) and Frazer (4) - his future is unclear.

"He may need a full heart transplant," she said.

"But that means it is so important that the excellent work in Belfast gets the funding it needs. The work they do, including that of Dr Casey, is just so vital."

She was speaking after a team of US experts made the recommendations to scrap children's heart surgeries in Belfast's Royal Victoria Hospital and redirect them to a new all-island service in Our Lady's Hospital, Dublin. This was approved by the former Health Minister in March. However, a centre of excellence would be developed in Belfast.

But Dr Frank Casey, head of paediatric cardiology at the Clark Clinic in the Royal Victoria Hospital for Sick Children, said the uncertainty of the last few years for children's heart services had led to lack of financial support.

"That now needs to change," he told MLAs.

Sarah Quinlan, chief executive of the Children's Heartbeat Trust, said the paediatric cardiology service in Belfast now needed investment and development.

"Our vision for the Children's Heart Centre encompasses all the care needs that children and their families require other than heart surgery and as they grow up," she explained. "This will include regular appointments with specialist staff, investigations and tests.

"We understand that this will require capital expenditure, but this should be recognised as a long-term investment in a service that hundreds of children currently access and that needs crucial support and development to maintain its current high standards in the face of losing its surgical element."

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