Having a baby with special medical needs means high formula costs

MENDOTA HEIGHTS, Minn. (FOX 9) - Much of the discussion surrounding baby formula in recent months has centered around the concerns about supply. But a mom from the Twin Cities also wants to shine a light on another issue: the high costs of specialized formulas.

Emily Pratt glows with pride as she talks about her beautiful 19-month-old, Lottie.

"She is thriving. She's vibrant and smart and strong-willed and a voracious reader," Pratt said.

She wants nothing more than to continue to see Lottie thrive. Lottie was born with Tyrosinemia Type One, a rare metabolic genetic disorder that means she can't eat most high-protein foods because her body can’t metabolize an amino acid called tyrosine. So she requires a special powder formula that is made by the company Nutricia.

"It's absolutely vital for her to have protein to hit all of her milestones. And so this is really a life-sustaining formula for her," Pratt said.

But highly specialized formula comes at a high cost.

"Last year, my husband and I were paying $800 a month for her formula, which is not realistic or manageable for most American families," she explained.

The nationwide baby formula shortage has been most dire for children with allergies, digestive problems, and metabolic disorders. Though Abbott Nutrition does not make Lottie’s formula, Pratt said she is concerned that the longer the shortage goes on, the more likely it is that other children could end up switching to Lottie's brand and then her family, too, could be affected by the supply concerns.

"It's really exacerbated the fear of being a parent that has a child with special medical needs," she explained.

As Pratt watches other parents in the special needs community struggle to feed their babies, she's grateful she can continue to access Lottie's formula, but she knows the price tag can be a huge barrier.

So she's turning her fears into action, as she advocates for Congress to pass the bipartisan Medical Nutrition Equity Act. It would expand insurance coverage to pay for medically necessary foods and vitamins.

She's also sharing Lottie's story to help others understand that breastfeeding or switching formula brands aren't options for every baby.

"Access is important, and every child should be able to get the food they need to survive," Pratt said.