8-month-old baby who needs special formula receives overwhelming support


My Fox Philly

Insurance policies have rules governing what’s covered and what’s not. Generally, they make sense. The rules are designed to prevent unreasonable costs from being passed along to the insurer and by extension to other insurance customers.

But listen to Sheree Kober’s story. Her daughter, 8-month-old Katelyn Kober, was born 8 weeks premature.

“And from the start, there were issues with her digestive system,” said Sheree.

Katelyn cannot drink regular baby formula. Her mom says the last time she tried, she landed in the hospital.

“Her intestines just stopped. They just stopped working. They X-rayed her and they found the formula was just sitting in her stomach and was not working its way down,” she said.

Which is why Sheree Kober and her husband buy their baby a specialized formula called Pregestimil.

It’s tough to find in stores, so she must buy it online. The cost of the specialized formula is more than $100 a day. The servings are tiny and it takes nearly a case a day to fill Katelyn’s tummy.

“A day. Yeah, and she has the acid reflux, so most of the formula we give her, she’s wasting it with the throwing up,” said Sheree.

The Kober’s pediatrician calls the specialized formula “medically necessary” for the baby’s continued growth. However, the couples’ insurance company, United Healthcare, says their benefit plan does not cover food of any kind, including formula, even if it’s the baby’s only source of nutrition.

“They just say it’s a formula. “It’s not a medicine. They say it’s similar to a diabetic needing sugar-free items,” said Sheree.

That’s 2,500 a month, out-of-pocket for mom and dad. So, they give Katelyn the cheaper, powdered version of Pregestimil, which if she’s hungry enough, she’ll drink.

Sheree has reached out to United Healthcare to plead her case, but without success.

She’s also contacted a host of government agencies for assistance.

Sheree buys what she can and begs local hospitals to give her what they have.

The irony of her dilemma, she says,” “If I don’t get the formula, I have to admit her into the hospital.”

Those hospital stays would be far more expensive for the insurance company and for the Kober family, than if United Healthcare simply picked up the cost of the “medically necessary” formula.

UPDATE: At FOX 29’s request, United Healthcare took a second look, but have denied her again.

United Healthcare said in a statement:

“United Healthcare understands the Kober family’s challenge to provide lactose-free nutrition for their child and has reviewed all supporting information received to date. As the administrator for the Kober’s benefit plan, United Healthcare must review claims and appeals based on the benefit terms which do not allow reimbursement for infant formula.”

But the story doesn’t end there. Reaction to FOX 29’s report on Monday on the specialized baby formula, Pregestimil, needed by 8-month-old Katelyn Kober, did not seem to phase the baby herself. She slept right through our return visit, curing which mom described as an outpouring of moral support.

“In the prayer community it’s overwhelming. And I’m very grateful. We’re a prayerful family and the more prayers, the better,” she said.

Then there was the knock at the door on Tuesday. At the door was a mystery man bearing a gift: the powdered form of Pregestimil. Not the ‘real’ stuff, but Katelyn can mostly keep it down.

“‘This is Doctor-X. Nurses A, B and C helped out. We got it from hospital D, and here you go.’ He was like, ‘don’t ask me any questions, please. Please.’ He was like, ‘we’re praying for you and wish you all the best,’ and left,” said Sheree.

The news hasn’t been all good. Sheree Kober has deleted a lot of posts to her Facebook page, blasting her for not breastfeeding her baby.

“They don’t know. They just don’t know what we’ve been through,” she said. “I have a medical condition where I can’t give the baby my breast milk. Mainly, I’m on a seizure medication which would pretty much ruin my baby if it got into her system.”

Sheree’s reponse?

“‘To my critics, thanks for making me stronger. Love, Sheree.'”

Now more great news; Joe Pacifico, from Pacifico Marple Ford-Lincoln in Broomall, saw our story and was moved by it, so he offered to buy a month’s worth of the special formula. That’s $2,500 for little Katelyn.

FOX 29’s Bruce Gordon called Sheree to let her know. She’s ecstatic, then right after that call ended, the people from Enfamil called and said they’re offering some of that formula, free of charge.

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