Conor and Toni Lavery with baby, Bronagh.
Conor and Toni Lavery with baby, Bronagh.

The parents of a Dungiven toddler waiting on open heart surgery have expressed their frustration over a review of services which has left them “no further forward” about when their daughter’s operation will take place.

The recently published Safe and Sustainable Review concluded that paediatric cardiac surgery is not sustainable in Belfast and should cease. It could see patients having to travel to England for their children’s treatment in the future.

Dungiven parents, Toni and Conor Lavery expected their 15-month-old daughter, Bronagh to undergo open heart surgery earlier this year. The brave infant has ASD common atrium, a condition which 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.

Bronagh’s parents signed off on surgical consent in March, expecting the operation to happen some six to eight weeks later. As of yesterday, however, they still had no date for the surgery.

“Our only simple request is information,” says Conor. “We want to know what’s happening because we know very little more from what we heard back in March.”

Bronagh is doing “exceptionally well”, says Conor, “but she needs the surgery. She does get tired quickly. It is really frustrating, it really is. The urgency has been taken out of it. Waiting on that phone call, the bag at the bottom of the stairs is almost gone.”

The Belfast Health Trust sent a letter to the Laverys recently which stated if their child was on a waiting list for treatment in the Trust within the next six months they “should be reassured their child would be unaffected by the review”.

“The letter has lit a fire under me. I’m ringing as many people as possible,” said Conor.

“It’s time to stop saying yes and nodding politely. It’s time to ask hard questions.

“It doesn’t matter where the surgery is, we just want to know when so we, as a family, can prepare and plan for it, and we’re not the only family in this position.”