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Before AOL CEO Tim Armstrong outed Deanna Fei's daughter to the world as a "distressed baby," Fei had no idea that her husband's CEO knew anything about the couple's child.
Certainly not how she came into this world at 25 weeks and weighing one pound and nine ounces. How she suffered a brain hemorrhage and her right lung collapsed. How they named her Mila on a whim, a name they later found out is short for Milagros, the Spanish word for miracle.
Fei had no idea her daughter was even on Armstrong's radar.
But she sure paid attention when he mentioned an AOL employee's "distressed baby" during a company town hall meeting in February 2014.
"Two things that happened in 2012 we had two AOLers that had distressed babies that were born that we paid a million dollars each to make sure those babies were okay in general," Armstrong said during the town hall.
A national media firestorm erupted at Armstrong's remarks. At the time, Business Insider sources said that Armstrong meant it as an example of how the company is still committed to taking care of its employees, despite having to cut parts of the employee's 401K program.
For Fei, it was a privacy violation. She said was still feeling "shame" and "guilt" at failing to have a full-term pregnancy, an acute emotional pain for a mother. Then her husband's boss had outed their daughter as "distressed," and his co-workers were quickly able to identify him as the father.
"That was a moment when suddenly my husband’s employer became an institution that had power over us and our most sensitive personal information, where that information had just been publicly exposed in a manner that brought out this trauma that we’re still struggling to recover from," Fei said.
Armstrong later privately apologized to the family, but Fei believed the damage was already done.
Hard to speak out
It took Fei more than a year to understand how her daughter became the subject of a media firestorm. She's released all of the details in her new book, "Girl in Glass," in stores today.
One major lesson she realized: her family's case is not that uncommon, except for the "distressed baby" label. In a 1996 survey by the University of Illinois, 35 percent of Fortune 500 employers admitted to looking at their employees' health records.
Courtesy of Deanna FeiDeanna Fei with Leo, Mila and her husband Peter
"What happened to my family is not that unusual. What’s unusual is that it happened on stage at a company town hall meeting and we knew about it, and people were talking about it," Fei said.
You don't hear about these cases because it's hard to speak out against them. The mother of the other baby, who is an AOL employee, told Fei that she wouldn't speak up because she didn't want to jeopardize her job.
Fei and her husband were torn between revealing their daughter or staying silent. Her husband, Peter Goodman, was an editor at AOL's Huffington Post, putting him a difficult position. (He's now editor-in-chief at the International Business Times.)
Fei, though, was a novelist and not an employee of the company. The couple decided she should tell their story and stand up for their daughter.
Courtesy of Deanna FeiDeanna Fei with Mila as an infant and Leo
"Here she was before me, and she’s been labeled with this dehumanizing phrase ‘distressed babies’ and I felt like I had to defend her humanity and defend her right to the care that saved her life," Fei said.
When Goodman told his boss, Arianna Huffington, that Fei was planning on publishing her story on Slate, Huffington allegedly responded that she was "disappointed" that she was not staying silent.
A spokesperson for the Huffington Post, though, denies Fei's story:
That's completely untrue. Arianna never spoke directly with Deanna. In an email to Peter after the employee meeting, Arianna expressed 'how deeply sorry she was' for what happened. Arianna's subsequent email to Peter about Deanna's article focused on the fact that it was being written after Tim had already apologized to all employees and reversed his decision on 401k compensations. Arianna expressed her "hope" that Deanna "will acknowledge that Tim reversed his decision and apologized. Otherwise she's not telling the full story or allowing for the possibility of redemption and forgiveness."
Why AOL knew about Mila
Beyond the label and the price tag of her care, the outing of the "distressed babies" revealed a much scarier fact: AOL knew their medical details, and Fei wasn't aware of it.
According to sources, and confirmed by Fei, AOL is self-insured. Many companies make that choice to save money and cover their employees, but you may not know your company gets information about your claims unless they tell you.
AOL reportedly contracts with other insurance companies like Cigna or United to be the up front face of the plans and handle the admin, while the company pays out behind the scenes. AOL did not respond to a request for comment from Business Insider.
Jessica Rinaldi/Getty ImagesAOL CEO Tim Armstrong
Since AOL is paying the bills, it needs to know something about what kind of medical care its employees are getting.
The details inform the company's decisions about changes to the health plan in future years; depending on what functions it's contracting out, it may also need to make decisions about what claims to pay and appeal.
Reports about high-cost claimants that get up to the CEO level should have identifying employee information stripped out, and it's likely that Armstrong saw one of these reports that referenced a high cost of care for an infant.
However, even that information can be identifying when used publicly, as in the case of Fei and Goodman.
"I think it’s important to remember that companies don’t offer benefits out of the goodness of their hearts. They offer benefits because it’s a good business practice," Fei said.
It's a warning to most employees who take advantage of benefits like preventative care, fertility treatments, or even basic health insurance. Your company may own your health data, which means reports on your expenses, albeit anonymized, could make their away across management's desks.
Not a million dollars
Courtesy of Deanna FeiMila in the NICU
AOL's claims that it paid a million dollars for each baby, "above and beyond" are untrue, Fei claims. (Sources told Business Insider the same thing at the time.)
Based on her calculations, the total came to around $550,000 for Mila's care. She was only able to go back and verify this after the initial controversy, which is why it hadn't been disputed previously.
"I want to be clear on this, there is no question that my daughter’s care was expensive. It’s expensive to care for a premature infant, it’s expensive to care for anyone who needs intensive care. But there’s no way AOL paid a million dollars for my daughter’s care, except as a result of decisions that Armstrong made," Fei said.
"And if AOL’s bottom line was really vulnerable to the medical care of two babies, the management was the one to do something 'high risk' to the company, not the women who had these babies here."
The right to defend your child
So how did Mila fare in all this?
At two-and-a-half, Mila has no idea what a "distressed baby" is or the complexities and risk of company run insurance. She's more concerned about having a larger cookie than her brother, Leo, or running to the top of the jungle gym to say "Look, I did it."
"When she saw the cover of the book the first time, she just beamed and said 'hey that’s me!' Of course she doesn’t understand the story yet, but I have to think she’ll be proud," Fei said.
Courtesy of Deanna FeiDeanna Fei with Leo
When Fei and Goodman made the decision to identify their daughter as the one in Armstrong's comments, it was to challenge the label and the price tag put on her care — a chance that many employees do not have because of fear of losing their jobs.
"There was no reason to make cuts" — AOL had just reported strong earnings — "and there was no reason to blame my child for them," Fei said.
They weren't concerned about identifying Mila because her most sensitive information — the story of her birth — had already been revealed.
"I think when she was publicly singled out this way, with this dehumanizing label and this price tag slapped on her, it was the first time I was able to step back and see everything she came through as a sign of her resilience, not just her damage," Fei said. "If I don’t own that, if I don’t teach her to own that, then I will be taking something away from here. It was her battle, and she earned it."
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