Like a lot of baby sisters, little Bronagh Lavery from Dungiven is adored by her siblings.
They want to hold her like their mummy and play with her when they can, and rosy-cheeked Bronagh is a willing participant. Every move her sisters Sinead (5) and Aoife (3) make she watches. At 10 and a half months old, the alert, brown-eyed girl devours her sisters’ attention.
Watching Bronagh and her sisters interact - Bronagh laughing and tugging her sister’s plaits - it’s hard to believe she will undergo open heart surgery in a few weeks time. The only tell-tale sign all is not as it should be with Bronagh’s health are the tubes flowing from her tiny nose.
The brave infant has ASD common atrium, a condition which kept Bronagh in hospital for the first three months. The defect means she is fully dependant on a constant supply of oxygen to support her breathing and is tube-fed directly into her stomach to reduce the effort taken during feeding.
“She’s a fighter,” says mum Toni, a maths teacher at St. Joseph’s in Derry. “A pleasant, happy little fighter.”
Toni and husband Conor, knew at 20 weeks from a scan there was something wrong with Bronagh.
“That was devastating,” recalls Toni, who explained a further scan at the Royal Hospital revealed further complications. “Only recently, having talked to her consultants, they said how they initially didn’t hold so much hope for Bronagh, but she’s a fighter and has been through so much.”
The couple admit it has been hard at times - the trips to hospital, the time away from their older girls - but credit support from a number of quarters, including family, friends, employers and the community for helping them through some tough times, especially when Bronagh first came home.
“It has been hard, but you just get on with it,” says Toni. “My sister Helen has been great, and can take the girls and keep their routine at any time.”
Conor, a teacher at St. Patrick’s College in Dungiven, said what was rare initially, is now part of everyday life.
“There is no question there are difficult days, but it’s rare Toni and I have a difficult day at the one time. It is challenging, but you’ve no choice but to get on with things,” he said.
“It becomes very normal very quick. Some days we have friends that call and if it’s one of those days Bronagh is on the heart monitor and if it beeps we won’t react, but our friends will be on the edge of their seats thinking, ‘What’s wrong?’ Even the girls are very good and call out her saturation levels.”
The couple have been overwhelmed by the level of care Bronagh receives from medical staff at the Royal Belfast Hospital for Sick Children, including three consultants looking after her respiratory, cardiology and surgical needs.
“They have been very supportive and very inclusive of us,” said Conor.
“At a time when our health service doesn’t get the best of press we can’t say enough about how amazing they are. They have been incredible from day one.”
The couple are also thankful for the support from The Children’s Heartbeat Trust. The charity provides practical and emotional support, as well as on site accommodation for families of children with heart disease receiving treatment in Clark Clinic and the cardiac ward in the Royal Hospital. The Trust also assists in funding medical equipment and initiatives like the much-needed MRI scanner for the Children’s Hospital.
It’s because of the help the Trust has given Toni and Conor, for example the “luxury of accommodation”, the couple, and 13 of their family and friends, will take part in the Belfast marathon on May 7 to raise funds as part of ‘Team Bronagh’.
“At school, as soon as I told them what we were doing, they said, ‘What can we do?’” said Conor.
“They’ve arranged coffee mornings, an Easter hamper to raffle off, all kinds of things. It has been incredible. I suppose that’s why we chose Heartbeat and decided to do the fundraising for the Trust so people can see how families are having their lives changed,”
Toni said having accommodation provided when Bronagh is in hospital is a “luxury, one less thing to worry about”.
“For those three months the thought of having to go into the city and get a room, or travel home every night, would have been exhausting,” said Conor.
The couple hope to raise at least £4,000 for the Trust, which will also help them with advice and support after Bronagh’s surgery.
“We’ve had so much help, it’s hard to know where to start. Family, friends, the school staff at St Joseph’s and St. Patrick’s have all been brilliant,” said Conor.
Support has also poured in from St. Columba’s, Drung, Donegal, where Toni’s uncle Fr. Tony Mailey is a curate, Conor’s family in Tyrone, and the community of Dungiven. The couple can’t believe people are so kind.
“It gives you such a lift and that gets you through the hard running sessions,” said Conor. “It’s overwhelming. Thank you doesn’t seem like enough.”
Team Bronagh is made up of 14 members taking on the Belfast City Marathon. Conor and a former St. Patrick’s College pupil Stephen Harkin, will be running the 26.2 miles while the others - friends and family - will take part in relays.
When Toni and Conor step up to the start line on May 7, baby Bronagh will be forefront in their thoughts in their effort to raise awareness and funds for the Children’s Heartbeat Trust and “their amazing support for families like us”.
Team Bronagh’s fundraising can be supported by going online at www.virginmoneygiving.com/team/bronagh; or Northern Bank have set up an account, which closes on May 31st - SORT CODE - 950306 - ACCOUNT NUMBER – 90059129.