“How much is a human life worth?” Deanna Fei’s memoir “Girl in Glass" attempts to answer this question by documenting how the premature birth of Fei’s daughter in October 2012 set into motion a series of “catastrophic” events that climaxed when Tim Armstrong, CEO of AOL, blamed the company’s increase in health care costs on “distressed babies.” One of these babies, Fei soon realized, was her own; her husband worked for Huffington Post, which had been acquired by AOL in 2011.
On October 9, just 25 weeks into her pregnancy, Fei suffered a medical event that she initially believed to be a miscarriage. Instead, she gave birth to a girl so premature that she was literally off the charts that listed developmental processes, health risks and chances of survival. Fei was repeatedly told that her daughter, whom she named Mila, was a “miracle,” a word that she hated given the continually compounding stresses and costs of health care and the uncertainty surrounding Mila’s future — and whether or not she even had one. And yet, Mila was soon allowed to be taken home by her parents, who remained hopeful that the worst was over while knowing that things would never quite be the same again.
This became apparent in early 2014, when Armstrong’s comments thrust Fei and her family back into the spotlight. In response, Fei penned an essay that appeared on Slate calling out Armstrong for his dehumanizing words and raising questions on human worth, the philosophy behind insurance, and health privacy. Fei accepted an apology from Armstrong shortly afterwards, but it soon became apparent to her through messages of support sent by other victims of health privacy violations that the controversy ran far deeper than her own story. Somewhat ironically, she also realized that, in order to further discussion on the topic, she had to tell her story — hence the memoir.
In the wake of Mila’s birth, Fei has transformed in several ways, of which becoming a mother for the second time is perhaps the least significant. Prior to this ordeal, Fei never gave thought to issues of privacy, but now, she firmly believes in health privacy as a civil right and advocates for reform on the issue. She also started ourdistressedbabies.org, a forum through which others who have suffered medical crises can share their stories to foster understanding and compassion.
But Mila’s tumultuous entry into the world has also taught Fei lessons about life and love that have changed her as a thinker and a writer. Fei spoke to us about some of those changes in a recent interview.
Did the writing of the book help to ease the trauma of these ordeals and controversies at all?
The writing of the book was in some ways the hardest writing I’ve ever done, but it was also the most necessary. There was so much that I hadn’t confronted about my daughter’s birth, the lingering trauma and aftermath, and the fears that continued to haunt us about her future that are never going to go away completely. And to have it all exposed in a very public and unexpected manner that became the subject of countless headlines was a whole new ordeal that I had never imagined experiencing. It really wasn’t until after the controversy that I was able to sift through the messages that were pouring into my inbox and read hundreds of really heartfelt and searing, honest emails that people were sending to me to say, “Thank you for speaking up for us. I’ve experienced something like this too.” Many of those stories, of course, were from parents of other quote-unquote “distressed babies,” and a lot of them co-opted this phrase that Tim Armstrong had seemed to coin with dignity and with pride, and also with a sense of solidarity and support that I had never really known that I needed.
I think one of the central aspects of having a baby whose future is so perilous from the start is the tremendously isolating experience. There’s a lot of stigma attached to it because, in our society now, we’re so used to thinking that pregnancy and motherhood is something that you can do right, you know? For a baby to be born and for everything to feel so long, it just feels like you must have done something wrong to have caused it. I had sort of internalized that as my own personal issue, but all these people writing to me told me, “This was how I experienced it too.” There was a whole other aspect of this outpouring where people said, “I’ve also experienced the ordeal of being treated as a burden on society because I or my child needed medical care,” whether that was being shamed in the workplace or an increase in rates in insurance premiums or getting demoted for no apparent reason just after suffering a costly medical crisis, or even getting fired right after a diagnosis of cancer or a troubled pregnancy. All these messages were hugely eye-opening to me.
When I first came forward to defend my daughter, I never thought that I was speaking for anyone but my daughter and my family, just to say, “Look, she’s a human being, just like anyone else. She’s not just some outsize burden on the corporate balance sheets.” All these stories that people shared with me showed that there’s a lot more here to explore and that the “distressed babies” controversy exposed much more than my family’s personal ordeal. It exposed huge vulnerabilities that I think millions of American families share. That was really the inspiration for me to write this book and to confront a lot of my own fears and the questions that had seemed unspeakable and really process the trauma, all in the service of the fundamental question that underlies the controversy: How much is a human life ultimately worth? This book was really a journey to the heart of that question.
In one chapter, you quote Joan Didion, who wrote that grief makes us look for omens. Many parts of the book involve you searching for these omens, which include the rational and biological factors that may have precipitated your ordeal, but also other “signs,” perhaps relating to what you were writing that day or something that someone said to you. After writing this book, what do you make of all these omens that you discovered and sought along the way?
I’m a writer, I’m a novelist, so it’s definitely my nature to look for the hidden connections that help to explain events that otherwise seem very mysterious. But I also just think it’s a basic human impulse because it’s more comforting to think that you can find the reasons behind a catastrophe. No one wants to think that we’re all vulnerable to be struck by a disaster at any moment. We all like to think that we can control, to some extent, the risks in life. We wear bike helmets, we eat organic kale, and if we’re expectant parents, we go to every checkup and screening thinking that somehow it will be okay. Sometimes, they are okay. With my first pregnancy, I treated “What to Expect When You’re Expecting” as my bible. I sort of subscribed to the notion that you can do everything right. Of course you need some luck, but aside from that, you can do everything you can to ensure the perfect baby.
The reality is that life is inherently uncertain. That’s as true in pregnancy as it is in life. I think in our current healthcare system, there has emerged this often unstated judgment of people who suffer medical crises. There’s often this suspicion that you had a chance to see it coming, somehow. Maybe you could’ve done something to prevent that. That’s something that I heard again and again and again from people who wrote to me about cancer diagnoses, about suffering a stroke, whatever it was: the birth of premature babies, the birth of babies who needed medical care for any host of reasons. Again and again, I heard that people felt a lot of blame, a lot of shame, a sense of failure. I think that when Tim Armstrong made his comments about “distressed babies,” the judgment suddenly became explicit in his description of these kids as burdens, as outsize expenditures that he had no choice but to cut employee benefits. He kept emphasizing that these were high-risk pregnancies, which was completely not true. That definitely tapped into this judgment of people who need costly medical care, for whatever reason. We’re also very quick to assume that the staggering costs of care in our country are the faults of any individual as opposed to the American healthcare industry.
Tim Armstrong is perhaps the central character in your narrative...
Can I just say one thing about that? It is true that Tim Armstrong is the central figure to all this, in terms of the media spectacle. But I will say that once I heard from all the people who were telling me about getting targeted by their employers for their medical expenditures, what really struck me was how none of the people who wrote to me, no matter how blatant the violation or mistreatment, none of them sought legal recourse. What also became clear to me was that it’s easy to feel like health privacy violations are so abstract. And yet, for all of us, never mind the birth of my child, our health information is probably the most sensitive information that can be exposed about us, whether you’re talking about a pregnancy, a miscarriage, a cancer diagnosis, marijuana use testing for the Alzheimer’s gene, ADHD — all of this is the most sensitive information about us and our families. None of us would want this to be exposed in the workplace, to our coworkers, to our bosses, never mind in the context of: “Look at this person’s medical bills. That’s why your retirement benefits needed to be cut.”
There’s a tremendous amount of blame and shame and trauma that get stirred up by incidents like that. I think my family was relatively fortunate in that my daughter’s care was covered mostly by employer-sponsored insurance, and I was able to come forward and defend my daughter, and my husband was able to leave AOL on his own terms in the wake of the controversy. But that doesn’t change the fact that for millions of American families, they are vulnerable to being targeted for their medical expenditures in the workplace. In a lot of cases, especially when people are struggling to cope in the aftermath of these crises, it’s extremely difficult for anyone to speak up. For one, it’s very difficult to prove violations of health privacy because the laws are so complex and also far too weak and outdated to give protections to most working Americans. But it’s also because you’re talking about employers who have direct power over you and your paychecks and your health insurance policies, all of which, for most people, their families depend upon.
The issue of privacy, especially as it relates to healthcare information, is a major theme in the latter chapters of the book. What do you think can and should be done to improve our conception of healthcare privacy, both in legal terms and otherwise?
I hadn’t ever thought of health privacy as an issue that would affect the daily life of my family. It seemed like something pretty abstract, and I think for most Americans, that’s true. On any given day, there’s a whole lot of things we can worry about, and I think health privacy doesn’t often come to the top of the list. Also, I’m not the kind of person to ever consider privacy in general as one of my foremost concerns. Of course, I always believed in privacy as a fundamental human right, but anytime I heard privacy experts issuing those dire warnings about the imperiled state of our privacy in the age of electronic data, I tended to shrug.
But where it really hit home for me was in realizing that health privacy is a civil right. Without health privacy, ordinary people can’t protect themselves from being discriminated against in the workplace for their medical conditions and the medical records of their families. The fact that all of our health information is being transformed into troves of electronic data that are being bought and sold and companies that we work for can directly collect because more and more companies choose to self-insure — they pretty much own your health data — that’s a fundamental and very dangerous tension that a lot of us are still overlooking. It’s only going to get worse unless we figure out a way to protect ourselves.
The fact is that many many Americans still depend on employer-sponsored health insurance, and in some ways, Obamacare has given people more options in terms of these exchanges, but it’s also increased incentives for employers to offer health benefits. For the near future, most are likely to continue doing so. At the same time, as everyone knows, healthcare costs have increased exponentially over the past few decades, just as most companies have become relentlessly focused on cutting labor costs and returning wealth to shareholders and executives. That gives CEOs like Tim Armstrong direct incentives to monitor employees’ personal health. Sometimes, there might be ostensibly legitimate reasons for doing so, such as containing overall costs, but the truth is, in the huge majority of cases, employers have no legitimate business in knowing any individual medical records or expenditures.
There’s no point in offering health benefits if you’re going to point fingers when people actually need to use them. This mentality that it’s somehow the victim’s fault is not only unfair, but it’s completely illogical. To say that anyone can control whether or not they have a premature baby, the fact is that the fundamental purpose of health insurance is covering events that are unpredictable for any individual but completely predictable in the aggregate. If you run a company of 5,000 employees as Tim Armstrong does, you can pretty much bet that, in any given year, someone might have an extremely premature baby. And if you’re running the company in the hopes that that won’t happen, that’s not a very prudent way to safeguard the company’s bottom line.
One motif or omen, as you put it, in the book is your mentioning that, the day you suffered the medical event that led to the premature birth, you wrote about your protagonist suffering a miscarriage. The fiction seemed to inform your reality, to some extent. On the flip side, how will this entire experience shape your future writing?
Even after my daughter came home, and even after her recovery was looking to be miraculous — as much as I hated that word when I first heard it related to my daughter’s birth — I still was haunted by the fear that, at any moment, I could lose her all over again. Just that sense that, one moment, everything was perfect, and the next moment, complete catastrophe with no warning — it’s hard to let go of that fear. Maybe it sounds silly, but I completely thought that I would never be able to go back to the novel that I was writing, because if I was going to write about anything bad happening to the baby in the book, I thought: “How can I know something terrible won’t happen to my daughter in real life?” It wasn’t just my writing. There were a million things I was superstitious about, like the way we used to gloat about how exuberant and full of life our son was. I was always afraid to celebrate anything out loud again because, at any moment, it could all be taken away from you.
But I really feel like my daughter taught me to be fearless in a way. She had no choice but to fight for every breath. She had no idea the odds that were against her, the fear about her future, the fact that, for a lot of the earliest part of her life — and it’s painful to admit — I was afraid to become attached to her because I thought at any moment I might lose her. She really showed me how to live in each moment knowing that you might not get the next one. I think I’ve been able to bring that back to my writing. For me, writing has always been a way to confront the dark mysterious areas of life that you don’t want to experience, but I think that your fiction comes alive when you plunge further into the depths that you’d otherwise like to go. Until my daughter was born, I don’t think I knew just how dark life could get, and how wide the unknown really is.
But I think it’s also taught me so much about love and uncertainty and the inherent fragility of life, and I hope to bring all that into my daily life as a mother and to let go of some of the worries that I think are endemic in modern parenthood: all the focus on the milestones and the benchmarks. Is your kid going to speak perfect Mandarin, or eat like a French kid, or get SAT scores like the Chinese kids are supposed to do? Everyday, I do a gut check. At the end of the day, I remind myself: Are we all safe and sound? Are we all together? I need that reminder just like everyone else. If that’s the case, then things are okay.
Also, there’s something transcendent about the love I think I learned from my daughter. Each moment I hold her, it’s enough, and it has to be its own reward. To this day, when she says things like, “Mom, I see the moon!”, that stills my heart. In writing, you have to go to the darkest places in order to have those moments of transcendence.
You discussed earlier that the book helps you tell the origin story for your daughter. But there are parts of the book that expose some very dark and honest emotions that surround the birth of your daughter. I’m sure there will be a time when your daughter will want to read the book, and some of those passages may not be pleasant to read. How do you hope to frame the story to her? Do you see any challenges in talking to her about the book, and if so, how will you overcome them?
There were many, many moments in the writing — especially when I had to leave her with my husband or a babysitter to go and write the book — that I did feel like I was betraying the deepest darkest secrets between her and me in order to capture the reality that we live through. For me, there was no point in telling her story unless I was going to tell the full truth. I think there are so many platitudes surrounding the talk about premature babies or the way we like to simplify the messy process of bringing new life into the world, in terms of these charts and checklists and images of the perfect baby. For me, what was most beautiful and important about her story was the fact that her journey, in some ways, defied every cliché that you could possibly ascribe to it. But it also confirmed, in some ways, everything that we might want from a feel-good, inspirational story.
I think that ultimately, this question of “How much is a human life ultimately worth?” is a terrifying way to assess someone’s existence. But because of how she was born, that was the question hanging over her from the start. I think that, ultimately, she will understand that every challenge that she faced was part of her journey. I’m the kind of person that hates the word “miracle.” The last thing that I expected was for her story to be this kind of a happy ending, and yet I can’t take that away from her. She earned that label, and I have to give it to her. Right now, she’s two and a half, and she’s just proud of herself for everything that she does on any given day. She’s so proud when she throws a terrible tantrum. She’s proud for stealing a toy or cookie from her big brother. When she saw the cover of the book for the first time, she said, “Hey, that’s me!” She was thrilled! I want her to know everything she overcame to be who she is today.
At the same time, I want to recognize, yes, in many ways, she’s a miracle. People who see her now will have no idea of her history. It took me a long time to let go of the worries about the kind of life she might live or what she might accomplish. I don’t mean in terms of test scores or school admissions. I mean in terms of whether she’d be able to crawl, whether she’d be able to walk, whether she’d be able to feed herself one day. She has sailed through any test like any other two-year-old. But the journey hasn’t been easy for her. Everything that I think ordinary kids can take for granted has been harder for her to reach. But if she didn’t seem so apparently unscathed, I don’t think the value of her life would be any less.