JOSEPH Loughran is a ball of energy.
Bounding in from Judo clutching a prize certificate last Wednesday, the seven-year-old Belfast boy defied the odds as a new-born when his heart stopped twice during life-saving cardiac surgery.
His tiny heart - which was the size of a grape during the major operation in the Royal Belfast Hospital for Sick Children in 2012 - and the vessel around it have a weakness which means he must be monitored for the rest of his life.
Last month, the sports-mad schoolboy - he also plays GAA for Carryduff, loves basketball and swims - travelled to Dublin for a three-hour procedure during which an adult metal stent was inserted. Without it, his life expectancy would be "markedly reduced".
Since 2015, Northern Ireland has had no surgical service for babies and children with serious heart defects after a review found the regional unit based at the Royal was no longer sustainable.
Instead, they must travel to Dublin where a new all-island service is provided at Our Lady's Children's Hospital in Crumlin. The vast majority of open-heart surgeries continue to take place in England however as the Republic rolls out the new 'network'.
For Joseph's parents, Brian and Sarah, their concern lay not in the procedure - they had "every faith" in the medical team - but the timing around it with Brexit looming.
In a confidential letter to GPs in February, the Department of Health pledged to protect the service in the event of a no-deal Brexit, saying: "It should be noted that we expect cross-border services, which are not reliant on European regulations or frameworks, such as the Paediatric Congenital Heart Service to continue."
However, the couple said the Department's "expectation" is not a "cast-iron guarantee".
"We found out at the end of the summer Joseph needed the procedure as his blood pressure had started to go up - and we started pushing to get it done before Brexit," said Mrs Loughran.
"I had no concern, no angst about the doctors doing the procedure. The actual angst and the stress about him getting it done was the scheduling of it - was it going to be before Brexit, before the nurses strike.
"The strike did lead to it being postponed and me and Brian were watching the news every night, thinking what if this is going to be put back and back after Brexit. Thankfully it went ahead on Valentine's Day - but what about the families coming after us?"
Despite the Department's assurances, Mr Loughran said are were "no certainties" and that the Crumlin unit is still a "fledgling service" which relies on the goodwill of medics.
A cardiologist and anaesthetist travel from the north each week to the Dublin hospital to perform specialist "intervention" procedures such as cathertisations. They cannot be carried out in Belfast because there no surgical cover in the event of things going wrong.
Mr Loughran said: "This relationship didn't exist with Dublin five years ago. They're trying to build a relationship with someone in another country - with a different health service where they are using their teams and trying to get them to facilitate it. So anything that becomes more awkward in terms of regulation, staffing, insurance and green cards is not ideal.
"We lucky that Joseph's procedure went well and the stent should last until adulthood but my fear is what happens if something goes wrong in the future.
"When Joseph was having surgery when he was born, his heart stopped a couple of times and I had to say goodbye to him. He would never have survived travelling to Dublin and certainly not England.
"People just think - ah sure, a hard Brexit will never happen and the service will be protected. But there's no Stormont, there's no health minister and there's no-one privy to the nuances of our area and the needs of our area."
Children from the north have been attending the Dublin 'congenital heart disease' unit as part of a phased approach since 2015, with 30 emergency and urgent cases seen each year, including those requiring life-saving open-heart surgery.
The Royal continues to provide pre and post-operative care for children with heart disease, such as scans and reviews.
A children's charity which has lobbied for the protection of all-island service said it understood government assurances were "not enough" for some families concerned about the impact of a no-deal Brexit.
"The fear is around emergency surgeries and we aware of the families' frustration...we are also worried about the impact of Brexit in terms of patient access, the workforce and medications," said Sarah Quinlan, chief executive of the Children's Heartbeat Trust.
"But we are confident that the all-Ireland network is not under threat and will continue to develop. We will however be keeping a very close eye as there must be no impediment to these families acessing this service. The reality is that 280 families from Northern Ireland will be travelling to Crumlin once it is fully operational.
"I'm just glad that it has been running for four years and is not beginning now."
