Insurance denies special helmet for infant with genetic disorder

MALTA, N.Y. (WTEN) — A local military family received tough news that their infant daughter has a deteriorating genetic disorder. 

The baby’s mom said that, on top of the diagnosis, they have also learned their insurance company is refusing to pay for a medically prescribed helmet.

Danielle McCann, of Malta, says her 10-month-old daughter Rian began having seizures at 3 months old. A battery of tests revealed a daunting diagnosis, CDKL5. Cyclin-dependent kinase-like 5 is a rare genetic disorder that can steal a child’s ability to walk, talk and eat without a feeding tube. The severity varies with each case, so parents never know upfront how debilitating it will be.

The disorder can also cause malformations of the skull resulting in swelling of the brain. Danielle said Rian’s doctors prescribed a special helmet to keep that from happening. Humana Military Tricare, which denied coverage of the helmet. As a military family, Tricare is their health insurance company through the Department of Defense.

“We shouldn’t have to put up a fight for something she needs. And I don’t think any parent should do that,” Danielle said.

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She said Tricare wants Rian to undergo cranial surgery first to repair any malformations before she is approved for a helmet. But, the mom ssaid, Rian’s is not a candidate for surgery due to her seizures. 

She said they will likely have to cover the $3,000 cost out of pocket.

“My husband serves his country every day, and this is how they repay him?”

Through an email, a Tricare spokesperson said federal Health Insurance Portability and Accountability Act laws prevent them from providing details. However, he said, Tricare will work with the family to help it navigate the child’s care.