Baby Sara Smith's heart condition bills not covered in N.L., parents say

A couple on Newfoundland's Northern Peninsula are struggling to keep up with their 16-month-old daughter's medical expenses, given that the equipment and drugs she needs are not covered by the provincial health system.

Danielle Smith, who lives in Main Brook, said her daughter Sara was born with complex congenital heart disease.

The little girl has five cardiovascular defects and an aneurysm behind her heart. It's a condition that one out of every 100 children are born with in the province every year.

She can't eat the way most kids do, needing a feeding pump and tube. However, her family has to pay out of their own pocket for the equipment she needs.

Smith said a pump is about $700, and other monthly supplies cost about $350. Unfortunately for Smith, none of those expenses are covered by MCP in Newfoundland and Labrador.

No government help

It's a different story in Ontario. In that province, parents of kids like Sara have feeding pumps and all of the necessary supplies covered by the provincial healthcare system.

Smith said social workers in Newfoundland have told her Sara's expenses would be covered in this province if she were on social assistance. 

The medical expenses are adding up for the couple, and the lack of government assistance means the burden falls completely on them to pay for the equipment.

That situation creates a lot of anxiety for Danielle and her husband.

"Sara just doesn't meet the criteria to qualify for a disability," she said.

Travel to and from St. John's are a big part of the expenses, as well as to the mainland. Medical travel assistance currently covers just one parent.

The travel expenses, along with the cost of the feeding pump and other equipment, makes for a situation where the couple sometimes wonder if they will be able to afford what their daughter needs.

Smith said there is only so much money that they can come up with to cover the costs.

"It's a lot. My husband works two seasonal jobs," she said.

"I'm not able to return to work right now because of Sara's condition."

To help alleviate some of the pressure, friends and family have stepped in to help, organizing fundraisers to offset the couple's medical bills.

Banding together

Danielle and her husband aren't the only ones dealing with the stress of not having their child's medical bills covered.

Pediatrician Dr. Christina Templeton has been advocating to have the needs of kids like Sara covered by medicare. 

"The financial burden is heavy but the emotional burden is heavier, because these are still very complicated kids," she said.

"With any sort of rare condition, regardless of whether it's heart or anything, it is harder on families and they have started banding together."

In the meantime, Smith hopes that by going to the media, she can bring awareness to something that is likely affecting other families as well.

"The system needs to be revamped," she said.

"I think that with all the awareness, that's starting to come out."

In response to CBC's story, Health Minister Steve Kent tweeted that he wasn't familiar with the Smith's situation and, while he hadn't been contacted about it, he would investigate the matter.  

Kent went on to post, "My staff have been working on this case for the past several days. I cannot discuss specifics without family's consent."