If anybody knows the meaning of the well worn phrase ‘what a difference a year makes’, it’s Toni and Conor Lavery.
Last Easter the Dungiven couple were anxiously waiting on a phone call to change the life of their youngest little girl, Bronagh.
Shortly after she was born, the brave toddler was diagnosed with ASD common atrium, a condition which kept Bronagh in hospital for the first three months. The defect meant she was fully dependant on a constant supply of oxygen to support her breathing and tube-fed directly into her stomach to reduce the effort taken during feeding.
Despite the countless hospital trips to the Clark Clinic at the Royal Victoria Hospital in Belfast, daily medication, and an oxygen cylinder as her constant companion, Bronagh thrived and enjoyed the rough and tumble with her devoted sisters, Sinead (6) and Aoife (4).
As proud mum, Toni says: “She’s a wee fighter.”
At the end of January, Toni and Conor got the call to say Bronagh’s surgery was scheduled to go ahead at Our Lady’s Children’s Hospital in Dublin but, shortly after they arrived, their hopes were dashed.
“We were waiting on test results when we were told the bed was needed for an emergency,” says Toni.
“We understood there was a child who was more sick than Bronagh and needed the bed, but we were devastated because we had waited for so long.”
A week and a half later, Bronagh had her surgery.
Cautious and afraid of a repeat of what happened a few weeks earlier, the couple told only their immediate family.
“I think it was easier than the first time; we were expecting another disappointment and delay. I still thought, ‘this isn’t going to happen’,” recalls Toni.
It was only when Bronagh was in theatre and the operation was underway, it actually became real. Saying goodbye to their bubbly, determined little girl as she lay on the operating table wasn’t easy.
“It was heartbreaking,” says Toni, “because you’re thinking about how much could go wrong but, at the same time, we knew she was in the best hands. This was the first time something was happening with Bronagh that was planned. It wasn’t an emergency. It didn ‘t feel so frantic.”
Six hours later, and Bronagh had come through surgery well. There had been no complications and, for the first time, Bronagh’s saturation levels were at 100.
After two weeks in Dublin, Bronagh was moved back to the Clark Clinic at The Royal in Belfast, where the couple say the staff have been incredible. After a few days, Bronagh was allowed to go home.
“It was amazing to hear that,” says Toni.
Since her homecoming, Bronagh - now 22 months old - has found a new sense of freedom without an oxygen cylinder constantly by her side. She is still being tube fed, but Toni says they are gradually getting Bronagh used to solid foods.
Bronagh still needs just a “trickle” of oxygen at night but, during the day, she enjoys being a typical toddler. At speed, she’s up and down corridors, dragging toys with her, playing with her sisters, and in the midst of mischief in a matter of seconds.
“She’s into everything,” says Toni, as Bronagh, clutching the straps of her sister’s schoolbag on her back, makes her entrance in the kitchen.
“She is more of a handful now- more of a toddler - a better, more improved version of herself.
“She still has her strong personality, but now she has the freedom to express it.”
Conor says since coming home from Dublin, family life has changed for the better.
“For the first time we are starting to see the real Bronagh emerge, her new energy coupled with her natural curiosity ensure that there is never a dull moment in our house.”
Toni said the surgery will also give the family so much more freedom.
“It means that if we go away, we don’t have to bring oxygen. We can just get in the car and, even for Bronagh, she can play on the swings in the back garden and we don’t have to worry about taking oxygen with her,” says Toni, and Conor agrees.
“Bronagh is finally getting the chance to develop and grow at her own pace. We are more confident now about any further challenges which she may face in the future,” said Conor. “This is her time now and we are so excited about catching up on the many family activities, which were not always possible during the past two years.”
The couple have nothing but praise for the staff in Dublin, and say their daughter received the best care possible. However, they say they have been incredibly lucky to have such a fantastic support network. They say their employers, St. Joseph’s Boys’ School in Derry where Toni is a teacher and St. Patrick’s College in Dungiven where Conor teaches, have been brilliant. Their family have also provided great support while they were in Dublin. Toni’s children stayed with her sister Helen, and other friends pitched in too. However, Toni says not every family is as fortunate as they are, which is why every effort must be made to maintain paediatric cardiac services in Belfast.
“No family should have to go through the worry and stress of having to travel to Dublin, or across the water. They should be able to stay here. That should be the number one priority,” she said.