Toddler Vivian Clayberg needs feeding tube that requires expensive special formula to survive

TULSA - With two incomes and health insurance, a couple never expected anyone to advise them to divorce, and have one quit working, just to feed their special needs child.

Before taking that advice from parents in similar circumstances, the Claybergs called the Problem Solvers.

“Vivian was born eleven weeks early," said Emi Clayberg. "She spent 120 days in the NICU. She was born with bi-lateral club foot, hip dysplasia, and in order to leave the NICU she had to get a feeding tube.”

BLOG: The Claybergs document Vivian's life

Now at two and a half years old, Vivian still depends on her feeding tube for her nutrition. The special lactose-free, high-calorie formula she needs to survive is expensive. “It costs $2,000 a month through the medical supply company. It can be a little bit cheaper if you go from Walmart or,” said Emi.

The amount she spends on the formula is nearly Emi’s entire paycheck.  Because Vivian was born weighing less than two pounds Medicare paid for her special milk until she turned a year old.  After Vivian’s first birthday Emi thought her health insurance covered the cost of formula.

“We didn’t realize that insurance wasn’t paying for it until just recently.” The realization came as a shock. Emi discovered the cost wasn’t covered when the medical supply company she used to purchase the formula said she could not order any more until she paid off nearly $9,000 in overdue bills.

“You would assume when you have two working adults and you have good private insurance that you wouldn’t have to worry about feeding your child,” she said.

The 2NEWS Problem Solvers found many health insurance policies do not cover the cost of food or formula for patients getting their nutrition through a feeding tube.

Emi is on her second appeal to her insurance company to cover the cost because the special formula is what keeps her daughter alive. She’s also applied to Social Security to see if Vivian’s disabilities would allow her to qualify for help.

“If the child is deemed eligible for Social Security immediately, Medicaid kicks in and then there are programs that the child would be eligible for,” said Laura Dempsey-Polan with the Morton Comprehensive Health Services. She added, parents in this predicament do need to network with other families in similar circumstances and use the Internet to seek out advice.

Emi is doing both.

She learned that since her family has two incomes it's likely Vivian will be denied Social Security benefits.  But, that’s not all bad. A denial could make her eligible for other programs.

However, Emi said her family can’t afford to wait for those answers. Vivian needs seven cases of formula a month to survive and that may bring her back to that advice to divorce and quit her job. Advice she doesn’t want to take. “If I have to… um, I mean it’s my daughter. I need to feed her.”

Last weekend with the help of family and friends the Clayberg’s held a garage sale to raise money to pay the overdue milk bill. They took in about $1,700. It hardly puts a dent in the bill and doesn’t provide for the future.  But they’re not giving up.

They plan to hold another sale in July.  In the meantime, they’re appealing to foundations that provide milk to special needs children and they’ve created a website to let people know about efforts to pay for Vivian’s formula.

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