It’s only a matter of time before Rhianna McAteer (15) needs another operation to repair or replace a valve in her heart. But while her last surgery was in Belfast in 2013, the Co Antrim teenager knows next time it is likely to be in Dublin.
Open-heart surgery has been stopped at the Royal Belfast Hospital for Sick Children and, within 18 months, all youngsters from Northern Ireland requiring operations will go to Our Lady's Hospital for Sick Children in Crumlin.
“I am not really a fan of that,” says Rhianna, who was born with an atrioventricular septal defect that was not picked up until she was six weeks old. “It’s a really long journey down and, after surgery, I am going to be really sore and tired and will just want to get home but I am going to have to spend two or three hours in the car.”
Her mother, Andrea, says the younger of her two daughters could need surgery within weeks or, if they’re lucky, not for another 10 years. Of the prospect of travelling to Dublin, it is not so much the distance but the practicalities that worry her.
“I would go to hell and back with a can of petrol to fix my child,” she says. “But it is the logistics of everything. You are staying in a hotel and there is the financial burden of keeping two homes.”
After a review concluded that heart surgery at the Belfast hospital was no longer sustainable, Birmingham was first suggested as an alternative before the proposals for an all-island service at Crumlin were agreed by Minister for Health Leo Varadkar and his Northern counterpart, Jim Wells, last October.
Rhianna was one of several teenagers who earlier this month attended a consultation at Stormont on the future of the North's paediatric cardiac service, in conjunction with Children's Heartbeat Trust. The charity is fighting to ensure that there will still be a high-quality support service in the city for children with congenital heart defects (CHD).
"In the life of a child or teenager the surgical event is obviously critical – but it is one event every few years," says the chief executive of Children's Heartbeat Trust, Sarah Quinlan.
Meanwhile, it is very important to be able to access the rest of their care, medication and support locally.
The transition from children’s to adult services is also an issue, as it is in the Republic. Quinlan would like to see transition clinics established, where a teenager meets his or her future adult service cardiologist in the company of the paediatric cardiologist. She thinks such a handover would be helpful both for the young person and parents.
Looking at Rhianna, who is 5ft 8in tall, you’d never think there is anything wrong with her, says her mother.
“The ironic thing is she loves sport and she can’t do it,” says Andrea. “Rhianna would be active one day and, if she is too active, she is lying down the next day and can’t lift her head. She gets frustrated.”
The teenager agrees: “I get annoyed when I can’t do PE at school. I am usually sitting out on the bench while all my friends are away doing all that fun stuff.” She can do some, for about 15 minutes before having to take a break, and she prefers to do that rather than miss the class altogether.
After dropping horse riding, she took up archery last summer and attends her local Causeway Archers club in Ballymoney every Tuesday.
“I am enjoying that. I can compete because it doesn’t take too much out of me – I still get tired but you can take breaks whenever you want.”
Is she good at it? “I’m all right at it,” she says. “I’m going to stick at it.”
Rhianna doesn’t like talking about her condition to people, unless it is relevant to a situation.
But she’s really enjoying a teenage support group that the Children’s Heartbeat Trust started last August with an overnight weekend event. There were specialist nurses onsite to alleviate parental concern, as some of the participants had never stayed away from home before.
The group has continued since with monthly outings but the charity is not bringing teenagers together to talk about their heart conditions, Quinlan stresses, but to socialise with other young people who understand their issues.
“I’m really enjoying it because nobody pushes you and they don’t slag you. We just hang out,” says Rhianna, who doesn’t think her parents are over-protective.
“They trust me enough and are not saying I can’t do certain things,” she adds. “They want me to know myself better, so I can tell them my limits.”
For more information, see childrensheartbeattrust.org