Out-of-province pediatric surgeries carry huge financial burden, say parents

Doctors and nurses can do a great many things to help N.L.'s sick children, but young patients still need to fly elsewhere for life-saving cardiac surgeries.
Lisa and John Anstey say travelling to Toronto for their 2 year-old son's heart surgeries has been a huge financial burden. (Bruce Tilley/CBC)

Doctors and nurses can do a great many things to help Newfoundland and Labrador's sick children, but the province's demographics mean that some young patients still need to fly elsewhere to obtain potentially life-saving surgeries. 

"The population of Newfoundland and Labrador is not large enough for us to have a pediatric cardiac surgeon here in the province," said Dr. Christina Templeton, a pediatric care doctor. 

The Janeway Children's Heath and Rehabilitation Centre's cardiology department in St. John's held an open house on Friday to raise awareness about congenital heart disease, and the services available to children diagnosed with cardiac illness in Newfoundland and Labrador.

Although a pediatric cardiac surgeon practised locally during the 1970s and 1980s, Templeton said the province no longer has enough children to support one.

Modern pediatric cardiac surgeons are able to treat a wide range of maladies, she said, but need a substantial population base nearby to ensure their surgical skills are maintained.

"All of our kids, when they come to the point of needing surgery, either they have to go to Halifax or Toronto," said Templeton.

"The patients who do need surgery are the minority, but they are a significant minority, and many children who do need surgery will need more than one."

Only families that qualify for government assistance can have their travel fees covered, which means that many parents who travel to Toronto and Halifax to be with their children during surgery must pay for it out of their own pockets.

According to Templeton, this can increase stress during an already stressful time.

"It does put a lot of strain on families, particularly at a time where they're already terrified because their child is having open heart surgery."

Huge financial burden

The Janeway Children's Health and Rehabilitation Centre does not have a pediatric cardiac surgeon, meaning that patients have to travel to Toronto or Halifax for surgery.

In the two years since their son Jake was born with half of his heart underdeveloped, Lisa and John Anstey have felt a strong financial and emotional burden. 

Lisa Anstey said her son has been to Toronto five times already, had three surgeries, and has another coming up this spring.

Nearly all the travel expenses have come straight out of her family's pocket.

Congenital heart disease in children also comes with other complications, said Anstey.

She said Jake has to be fed by a tube with special formula, and that adds another hundred dollars a month to the family's medical bill.

"There are no supports for that in place," said Anstey.

"Any time we've applied for or enquired about, we've always [been] told Jacob doesn't qualify because in the minds of people making these policies, Jacob does not have a disability."

Antsey said that she can name a half dozen families right off the bat who are in the same situation as her family.

While there is a support group in the Janeway's cardiac unit that does what it can and helps organize fundraisers, the reality is that most families who have a child needing congenital heart surgery will face a huge financial burden.

According to Lisa Anstey, she and her husband spent upwards of $25,000 in the first year of Jake's life alone, and as her child prepares for another out-of-province surgery, it's all but guaranteed that the costs of travel will continue to increase.