Families of kids waiting for heart transplants in B.C. face 'difficult decision' after program put on hold
Families of children waiting for heart transplants at BC Children’s Hospital are now facing some unexpected stress and uncertainty: they’ve been told the transplant program is on hold, and they’re now having to consider getting on another province’s wait list, or even leaving B.C.
Two-year-old Zoe Lin of Burnaby is one of the children on the wait list, following a diagnosis at just seven weeks old.
Her mother Isadora told CTV they rushed her to the emergency department at BC Children’s, after she stopped eating and became listless.
“In our drive from home to the hospital, she had kind of lost all her colour,” Isadora said. “She was really grey and she wasn’t really moving at all.”
After a few days of testing, Zoe’s family heard from the cardiology team.
“We recieved the news that her heart function was very poor as a result of a heart disease, called left ventricular non-compaction cardiomyopathy,” Isadora said, and added they were told the worst case scenario is that she would need a heart transplant. There was also the risk of sudden cardiac arrest.
“It was a lot to bear,” her mom said.
The family was referred to the hosptial’s heart centre, and for the first six months, they took Zoe in once or twice a week. Zoe was also prescribed medication.
“They’ve been great every step of the way,” Isadora said.
When she was just over a year old, Zoe’s father William said more scans were done, which showed “really no change.”
“To be proactive and to make sure that she didn’t go into a worse state, the doctors ... recommended to us that we list her (for a heart transplant),” he said. “So that was a very hard decision to make, seeing that she was so young, she didn’t really show too many signs physically, but internally, the doctors weren’t happy with how her heart was progressing. We agonized over that decision for weeks.”
Isadora said another factor in their decision to put Zoe on the wait list was their confidence in her surgeon.
“He played a big part in our decision,” she said. “We felt comfortable, we felt assured.”
Zoe has now been on the wait list for just over a year, but recently, her parents got some unexpected news.
“They called us and told us the transplant program was being suspended,” Isadora said, and added they were also informed of two options. “Re-list in Edmonton, in which we could stay in Vancouver, or list in Toronto, in which we would need to move to Toronto to wait.”
Court documents reveal a lengthy workplace dispute involving two of the doctors in the program, pediatric cardiothoracic surgeon Dr. Andrew Campbell, and the head of the pediatric cardiovascular and thoracic surgery division Dr. Sanjiv Gandhi, who is Zoe’s surgeon.
In a BC Supreme Court ruling from April, Justice Nigel Kent wrote the problem is “one of the hospital’s own making”, adding they were “well aware” of the two doctors’ individual concerns, “yet chose to do nothing about them.”
In an email, the hospital told CTV that Dr. Gandhi is going on a “prescheduled leave,” but could not confirm further details due to privacy.
“BC Children’s Hospital senior physician and operational leaders have arranged for locum coverage to cover cardiac surgical services with the exception of the transplant program,” the hospital said.
BC Children’s said it is facing “an immediate shortage of cardiac surgeons,” and is working to support patients, including the five transplant families who are affected.
“This includes exploring options for out of province care, as required,” the hospital said in a statement. “We understand these changes - even if temporary - will have a very real impact on the lives of these families. We deeply regret causing them additional stress.”
Zoe’s parents, who also have two other young children, are leaning towards the Edmonton wait list option. They hope to stay in Metro Vancouver, where they want to raise their children, and where they have a support network to help them with child care if needed.
They also want to raise awareness about the importance of BC’s pediatric heart transplant program, which had only been established in 2013.
“We should have the same type of medical care that other large cities should have. And we did have that. The unfortunate part is, it’s taken away right now,” William said.
“Hopefully, there’s some sort of a resolution, so that other families aren’t left in limbo, making a very difficult decision.”