Harley Loewen is only 14 months old and just learning to walk, but his path is already filled with obstacles.

He was born with esophageal atresia, which means he has a gap in his esophagus.

"We have to tube-feed him," says his mom, Chyanne Loewen.

That means she slowly pushes small doses of formula through a syringe into a tube connected to his stomach.

"We do that four times a day. His tube-feeds sometimes take an hour and a half."

The challenges don't stop there. Harley has trouble tolerating almost everything he's fed. He often retches, but because of his incomplete esophagus, the toddler can't actually throw up.

"He turns bright red. You can see the veins popping out of his head," says Loewen, 21. "Sometimes when it gets really bad, he's struggling to breathe for, like, two minutes."

After experimenting with multiple formulas and homemade blends, Harley's parents finally found one he can keep down. But the product isn't covered by the Manitoba Home Nutrition Program — a provincial program which offers support to patients who use feeding tubes.

Chyanne Loewen says her son doesn't tolerate most liquid food and formulas they've tried with his feeding tube. (Jeff Stapleton/CBC)

Charles S. Cox, a Houston-based pediatric surgeon who specializes in treating esophageal atresia, says feeding difficulties are common and finding a solution can take time.

"You can change any of the variables," including "the content of the formula, the rate at which it's fed, the route through which it's fed," he said.

"There's just not a simple answer to that."

But Loewen says she was hopeful when she found a product called Nourish, which Harley seemed to be able to hold down. Unlike the powdered milk-based infant formula covered by the province's Home Nutrition Program, Nourish is a blend of whole foods, such as beans, peas and brown rice.

"I brought it up to the dietitian and she just said no, because it's not on the approved list."

After reviewing Nourish, a government health official notified Loewen last week it will not be covered.

Loewen says it would cost about $900 a month to feed Harley with Nourish, which is more than the young family can afford.

A spokesperson for the Winnipeg Regional Health Authority, which administers the provincial nutrition program in the city, says Manitoba Health will only approve a new product if it's found to have something the others are lacking.

The health authority says it's been working with the province and the family to find a solution.

"Their care team, including expert dietitians and pediatricians, have been working actively with them for the last number of weeks," the health authority said in a statement sent to CBC last week.

Loewen suspects pricing could be a factor. By her calculations, the formula the province provides them, Nutrigamin, costs about $270 less per month than Nourish, based on the amount Harley eats.

At just 14 months old, Harley Loewen must take all his meals through a feeding tube connected to his stomach. The only food he seems able to tolerate isn't covered by Manitoba Health and it costs too much for his family to afford. 2:29

The health authority says families can bring matters to the Manitoba Board of Appeals, if they disagree with its decisions. Loewen hopes it doesn't come to that.

"We have to figure this out," she said. "I pay into this health-care system. My son deserves to have the best life. And him retching and struggling every day is not the best life."

Two attempts at corrective surgery have been unsuccessful. Harley is slated for another operation in a few years, at Toronto's SickKids hospital.

Until then, he'll have to keep using a feeding tube. That keeps the pressure on his mother, who says she's already put her career on hold to take care of her son.

"I'm a lot better with it now.… Now I can talk about it without bursting out crying," she said.

"But it's still a lot to take in with your first child."