The family, who wish to remain anonymous, have been canceled three appointments for the child’s surgery at Bristol Royal Children’s Hospital since September.
Once the parents said their child was about to go to the theater when they were told the surgery would not go ahead.
Her last cancellation was in early December, and the parents say they have had no communication from the hospital since.
They said: “The communication is just absolutely terrible. They literally just ring the bell and say, ‘We have a date for you. Are you available on this date and that?’”
In response to complaints from two other parents of children on the heart surgery waiting list, Professor Stuart Walker, chief medical officer at Bristol University Hospitals and Weston NHS Trust, said last week: “Postponing planned surgeries is always seen as a last resort.”
Parents are concerned about the psychological toll the cancellations are having on their child, who is due to take exams at the school later this year. They are concerned about the long-term psychological and physical effects delaying treatment could have.
They added: “It’s just so stressful for my kid. I have to pay for the counseling at the moment because they don’t do well with it at all.
“My child understands what is going on and understands what the surgery entails as open heart surgery that will stop his heart. That’s a big deal for a teenager.
“We were told that if the heart gets too big, you can’t undo it. And once you have an enlarged heart, you have a very weak heart.”
“Obviously it bothers me. And the longer they leave it, the bigger it gets.”
Discussing how the hospital could help families, the parent said: “I want them to communicate better to let us know what’s going on. I want them to just be honest and say what the problem is. Is that it? Are there no beds or is there no staff?
“Even if they could only give you a rough idea: ‘That’s what we’re doing, that’s what we’re trying to do to get the backlog down, we’re trying to get more staff, we’re sorting out the ICU beds, that’s our goal’ .
“But you’re just left in utter limbo with no idea if it’s even going to be this year.”
Professor Stuart Walker, Chief Medical Officer at Bristol University Hospitals and Weston Trust, said: “Patient safety is our top priority. Like all children’s hospitals across the country, we are extremely busy at the moment.
“We are currently caring for a large number of children with acute respiratory infections who are arriving as emergencies.
“Unfortunately, many of them required intensive care support, which may mean that we have to postpone planned surgeries. Each child on our waiting list is regularly reviewed by our senior consultants to ensure they are given the right priority for treatment.
“Postponing a planned operation is always taken as a last resort. We understand how distressing this is for our patients and parents and are making every effort to avoid it.
“We would like to apologize to all our patients and parents who have experienced this and thank them for their patience.