TOPICS > Health > NewsHour Bookshelf

Being shamed by a CEO turned this mom into a health privacy advocate

July 21, 2015 at 6:25 PM EDT
Deanna Fei was thrilled when her daughter, born premature at 25 weeks, came home from the hospital. Then, her husband’s boss – the CEO of AOL – claimed he was trimming workers’ retirement benefits because the company had spent too much money on medicals bills from “distressed babies.” William Brangham talks to Fei about the experience and her new memoir, “Girl in Glass.”

JUDY WOODRUFF: Now: when one family’s personal drama sparked national headlines.

Deanna Fei’s premature baby girl had survived a long, arduous stay in the hospital, when she and her family were thrust into controversy. It happened when the CEO of AOL, where Fei’s husband worked, said he would cut benefits for all workers because of high medical costs for cases like hers.

She describes the experience in a new memoir called “Girl in Glass: How My ‘Distressed Baby’ Defied the Odds, Shamed a CEO, and Taught Me the Essence of Love, Heartbreak, and Miracles.”

William Brangham talked with her recently in Brooklyn, New York.

WILLIAM BRANGHAM: Deanna Fei was just 25 weeks pregnant, hard at work on her second novel and months away from her delivery date. She’d been researching translations for a plot twist where one of her main characters would have a miscarriage.

That night, her own contractions came out of nowhere. Rushing to the hospital with shooting pains in her womb, the translation of the word “calamity” was still on her computer screen.

DEANNA FEI, Author, “Girl in Glass”: The pain just got worse and worse and worse. And I found myself desperately thinking, like, ‘Could this be Braxton Hicks contractions? You know, the false labor?”

But it felt nothing like that. And by the time I got to the hospital, I was fully dilated. And the doctors had to perform an emergency C-section.

WILLIAM BRANGHAM: Nothing in Fei’s own history predicted a calamity like this. She and her husband, Peter Goodman, had always been the lucky types, traveling the world together, pursuing careers in writing and journalism.

During a trip to India in 2010, they made an offhand prayer to the Hindu gods to bless them with their first child. And nine months later, a chubby boy named Leo was born, healthy and right on time. This second pregnancy, which was a surprise, came almost a year after Leo’s birth and had been going just as well, until those pains started.

DEANNA FEI: All that was in my head was, ‘I think I lost my baby. I had a miscarriage.’ And when the nurses and doctors said things like, ‘Congratulations. Would you like to take a picture of her?’ I almost felt like it was a kind of farce. And both my husband and I had this feeling of, ‘This isn’t how a baby gets born.’

WILLIAM BRANGHAM: She was a baby girl, weighing just one pound, nine ounces. Barely a quarter of her brother’s birth weight.

One doctor described her skin as — quote — “gelatinous.” Because she’d arrived so early, she had few of the normal functions or immunities babies develop in utero, so she had to live enclosed in this glass incubator in a neonatal intensive care unit. Her parents were even reluctant to give her a name at first.

DEANNA FEI: She was really hard to look at. I mean, everything about her to me felt like, ‘I don’t know if she’s supposed to be here. And I don’t know if she’s going to be here.’ Because what we also heard from the beginning, along with the congratulations, was, ‘She might not survive one month, one week, one day.’

There was a part of me that felt like, it’s kind of the mother in me thinking, like, ‘Do I need to let her go? Is it selfish to hold onto this idea of this baby, when maybe she just isn’t meant to survive?’

WILLIAM BRANGHAM: Even though the next days only got worse — there was bleeding in her brain, and then a collapsed lung — they did name her. They called her Mila. Hope started setting in.

PETER GOODMAN, Father of Mia: When we realized that we could put our hand inside the incubator and give her access to my pinkie finger, and she would squeeze it and hold on, once I got to see her eyes and realized that she looked a lot like our boy, and once I started to see her really fight for her own life … I mean, the nurses said day one — and I thought, ‘You must be making this up for my benefit’ — ‘She’s really feisty,’ they said.

WILLIAM BRANGHAM: Three weeks in, Fei was able to hold Mila for the first time.

At week nine, Mila breathed without life support. And a month later, she was going home. She was three months old. Once there, she seemed to thrive, hitting all her major milestones, and showing no signs of the brain damage some premature babies experience.

Goodman was back at work. He was an editor at The Huffington Post, which is owned by AOL, when some corporate news broke that hit very close to home.

Tim Armstrong, AOL’s CEO, announced he had to trim his employees’ retirement benefits because of high health insurance costs. But who he blamed for those costs sparked a media frenzy.

Armstrong said, quote: “We had two AOL-ers that had distressed babies that were born that we paid a million dollars each to make sure those babies were OK in general. So, when we had the final decision about what benefits to cut because of the increased health care costs, we made the decision, and I made the decision, to basically change the 401(k) plan.”

PETER GOODMAN: It was clear that he was talking about my kid. And friends of mine in the newsroom came through in the course of the day and they said, somewhat embarrassed, ‘He’s talking about your kid, isn’t he?’

DEANNA FEI: It sounded extremely dehumanizing, and it had no relation to the daughter who was in front of me. She had actually started taking her first steps just that week.

And that was a huge milestone for us, because, of course, every milestone brought so many new worries, where every time she achieved one milestone, we would start to worry: Is she ever going to do the next one? You know, once she crawls, is she ever going to cruise? If she cruises, will she ever walk? And then she took her first steps and then this happened. And all of the trauma just kind of came rushing back to me.

WILLIAM BRANGHAM: The couple felt shamed, then angry. Fei channeled her anger into a blistering piece in Slate called, “My Baby and AOL’s Bottom Line.”

She wrote: “Our daughter has already overcome more setbacks than most of us have endured in the span of our lives. Having her very existence used as a scapegoat for cutting corporate benefits was one indignity too many.”

DEANNA FEI: There was the implication that we had used more than our fair share of health benefits. There was the implication that somehow her care was optional, because Tim Armstrong portrayed her as this outsized burden on the corporate balance sheets. And he also implied that the company had done more than it needed to do in paying for her care.

WILLIAM BRANGHAM: Armstrong, who declined to comment for this story, did call Goodman and Fei to apologize, and he eventually reversed the decision to reduce his employees’ 401(k) plans.

But Goodman was done with the company. He left AOL for The International Business Times. After her piece in Slate went viral, Fei started hearing from others who’d been blamed by their bosses for having costly medical care, things like cancer treatment or major surgeries.

DEANNA FEI: The truth is, until recently, I was one of those people whose eyes would glaze over at a term like health privacy.

WILLIAM BRANGHAM: Deanna’s book, “Girl in Glass,” is both a memoir and an impassioned plea to not let what happened to her family happen to others.

DEANNA FEI: These are risks that are extraordinary for any individual family, but they are completely predictable in the aggregate. And that’s the point of health insurance.

WILLIAM BRANGHAM: Lawrence Gostin is a professor of global health law at Georgetown University.

He says employers should never blame or embarrass employees who get sick or even be in a position to do so.

LAWRENCE GOSTIN, Georgetown Law: The lesson is that you have no business knowing the confidential health information of your employees, that you should make sure that there’s a strong firewall between you, as the employer making employment decisions, and health care decisions and health insurance decisions.

That needs to be separated, and that comes to me loud and clear.

WILLIAM BRANGHAM: Fei and Goodman also say employees need to demand their rights to privacy, just as Mila, who is now 2, is learning to demand what she wants. And it’s chocolate ice cream.

Mila has continued to grow and thrive and has so far shown none of the ill effects Fei or any parent of a premature child worry about.

DEANNA FEI: You know, these days, I think it is hard to escape this term that I hated when she was first born, which is the term miracle child. Because we were just hours removed from her birth, and hearing all the odds against her, when people would come to us and say, ‘Oh, well, she will be a miracle. She’s going to be your miracle child. Just wait and see.’

And I finally reached a point where I have to say, ‘You’re right. She is. She’s amazing, and no one can take that away from her.’ She’s earned that. If anyone has earned that label, she has earned it.

WILLIAM BRANGHAM: She’s still young, so Mila may face health challenges in the future. It’s hard to tell at this point. But for a story that began in catastrophe, Mila’s parents are glad this chapter of their lives is a happy one.

For the PBS NewsHour, I’m William Brangham in Brooklyn, New York.