Insurer Reverses Decision on Teen's Brain Surgery

When Caitlin White was diagnosed with a rare brain disorder in May, she assumed that her health insurance would cover the cost of the expensive surgery.

Caitlin White, 19, claims that she was initially turned down for full coverage of her brain surgery this coming Monday until media calls got Aetna to reverse its decision.

(Courtesy Caitlin White)

But the 19-year-old has had to battle her insurance company as she fights for her health while her family faced the wrenching decision of how to pay for the $113,000 procedure.

White finally got some good news on Thursday when Aetna reversed its initial decision and approved full coverage of her operation scheduled for Monday, July 21.

"I just got a call from Aetna today that they would cover 100% - I don't know if they don't like the media attention or what," she told ABCNews.com.

White's first date with surgery was canceled last month because she said Aetna withheld its approval so long that the operating room had to be given away to another patient.

When a second surgery was scheduled, Aetna then said it would not approve the surgery, according to her family, who said that Tampa General Hospital required a $55,000 down payment before proceeding with the operation.

"They're saying that I supposedly ran out of benefits," said White. "It was kind of like a stab in the heart. We can't afford that, let alone in the next week."

A spokeswoman for Aenta confirmed that the procedure would be fully covered but disputed the accuracy of some aspects of White's story.

"We did not approve or deny the surgery, as it was reported, because we do not require pre-authorization for surgery under this plan," said Cynthia Michener.

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White's story is just the latest example of policy holders being forced to navigate an increasingly bewildering health insurance system, said Robyn S. Shapiro, the director of the Center for the Study of Bioethics.

"We hear about a lot of these cases. Reasons for denial can range from 'We don't think this is necessary' to 'You didn't jump through enough hoops to get clearance.' It's sad."

The crisis began for White on Mother's Day, when her mother found her, lying unconscious in her bedroom clutching her makeup bag.

After five days in Lakeland Regional Hospital, where she was subjected to a range of tests, White was finally diagnosed with quiari malformation, a rare disorder in which the flow of cerebral spinal fluid is blocked at the base of the skull. The condition can lead to loss of motor skills, loss of memory and even death in the most severe cases.

Over the last two months, White has had six fainting spells and severe headaches, said her mother.

"One time, she fell and hit her head pretty hard on the baseboard," said Sheila Jackson. "We keep her under watch at all times. She'd just finished massage therapy school, and she was working at CVS pharmacy, but she had to give that up and stay home since this happened."

Shortly before the diagnosis, White had also started working as a photographer at Disney's Magic Kingdom, where she had not yet qualified for health insurance but has since had to leave that position due to her medical condition.

The family scheduled brain surgery for White, but her mother said that the day before the June 6 operation, Lakeland Regional told her that Aetna insurance had denied coverage and that the family had until 4:30 p.m. to secure the operating room.

"Finally, at 4:45, they called and approved it, but it was too late," said Jackson. "The hospital had already booked somebody else. They gave her spot away."