Q&A with Deanna Fei

Deanna Fei is the author of the new book Girl in Glass: How My "Distressed Baby" Defied the Odds, Shamed a CEO, and Taught Me the Essence of Love, Heartbreak, and Miracles, in which she tells the story of the premature birth of her daughter and how her family became involved in the national healthcare debate when the CEO of AOL used the term "distressed babies" while discussing cuts in employee benefits. Fei also has written the novel A Thread of Sky. She lives in Brooklyn.

Q: After initially writing an article about your family's experience, why did you subsequently decide to write this book, which goes into far more detail? 

A: When I came forward to tell the story of my daughter’s birth for the first time, I was trying to defend her basic humanity against a CEO’s portrayal of her as an outsized burden on the corporate balance sheets. The trauma was still so raw for me that part of me hoped the story would end there. 

But then I found myself reading an outpouring of messages from strangers around the world who told me that, in some small way, I had given voice to them, too. Many of them entrusted me with the stories of their own children, co-opting the CEO’s dehumanizing phrase, “distressed babies,” with dignity and pride.

They crystallized for me how much we all stand to learn from a child like my daughter: about heartbreak and hope and resilience, love and fear and how to live in each moment. They helped shed light on how much I still hadn’t confronted about her earliest days and how much more there was to understand about how she had made her way home. 

And, most crucially, they showed me how a story like hers compels all of us to reckon with one of the difficult--and crucial--questions we can face: How much is a human life ultimately worth? Girl in Glass is my journey to the heart of that question.

Q: You write about some very difficult and personal situations. How hard was it to revisit this time in your life?

A: This was the hardest writing I’ve ever done, and also the most necessary. Revisiting my daughter’s most perilous times required reliving them, moment by moment. The morning I woke up in pain twenty-five weeks into a perfect pregnancy. The day she suffered a brain hemorrhage. The night she stopped breathing.
Sometimes, tunneling back to those moments felt like an utter betrayal of the daughter at home with me--this happy, bright-eyed, irrepressible little girl who never seemed to look back.

But in order for me to make sense of her story, I needed to unravel the full truth. I needed to explore all of the fears that had seemed unspeakable. All of the terrifying questions I'd had no choice but to confront: How to be the mother of a child I could lose at any moment. Whether my daughter would survive another day--and whether she should.

Ultimately, it’s all part of who she is, and who she is has made me who I am, and it’s the most fundamental story we all tell our children: the story of how they arrived in the world.

Q: In addition to your descriptions of your daughter's first months and the impact on your family, you discuss current problems with the American health care system. What changes do you think could prove beneficial?

A: In many ways, my daughter’s story is a story of the American health care system at its best: the heroic doctors and nurses, the decades of technological innovation and medical research that went into her treatment, the messy but organic evolution of science, politics, law, and ethics that have shaped how we care for premature infants. That care saved my daughter’s life, and every single day, my family and I feel blessed.

But her story also brought to light deep-rooted and complex problems in our system. How we’ve come to view pregnancy as a checklist of risks that we're supposed to somehow control--and the way we blame women (and we women blame ourselves) when a pregnancy goes “wrong.”

The staggeringly high cost of care in our country, which we often attribute to individual patients instead of the American health care industry.

The fact that millions of ordinary Americans are completely vulnerable to having our personal health information used against us by cost-cutting employers.

How employers increasingly treat employee benefits as a zero-sum game, pitting employees against one another, while executives collect extravagant bonuses for their cost-cutting. 

The fixes aren’t easy, but they’re well within our reach. We need comprehensive legislation to safeguard our health privacy so that we're protected from getting targeted by employers for needing medical care.

We need responsible and compassionate insurance policies that can also safeguard companies’ bottom lines.

We need to expand public health programs to provide women and babies with the support they need--programs that have been shown to be highly cost-effective.

Finally, we need to take a good, hard look at the fact that the U.S. is alone among industrialized nations in still failing to provide universal health coverage to its citizens.

I recently founded a site, http://ourdistressedbabies.org, where people can share their own stories of medical crises and violations of their health privacy to raise awareness of the need for more compassion and justice in our health care system. Breaking down the walls of shame and silence that surround these ordeals is the first step. 

Q: Toward the end of the book, you discuss the issue of privacy. What has the impact been on your family's privacy from AOL's Tim Armstrong's comments and your article, and what impact will this book have in that regard?

A: Tim Armstrong publicly exposed my family’s trauma, made my daughter identifiable to my husband's coworkers, and attached a price tag to her life--all for the purpose of deflecting blame for his own cost-cutting. This was an extremely painful ordeal for me and my family.

But we were also relatively fortunate. I was able to speak out to defend my daughter. Armstrong apologized, and I forgave him. My husband was able to leave AOL on his own terms in the wake of the controversy. 

But none of that changes the fact that for most people who suffer violations of their medical privacy in the workplace, the damage is often devastating. So many people who wrote to me shared stories of awful mistreatment at the hands of their employers: getting shamed, demoted, even fired--all for needing medical care.

I don’t know what impact the book will have in terms of my family’s privacy in the future. Clearly, in writing Girl in Glass, I’ve chosen to expose some of the most profound and intimate moments in the life of my family. 

For me, this has been a transformative and empowering experience. It forced me to finally confront the shame and guilt that I had internalized ever since my daughter's birth. It allowed me to reclaim the power of telling her story.

And it's given me a way to frame her story in the context of our shared humanity, and with the hope that her story can help give voice to others. As a writer and a mother, that's something I can never regret. 

Q: What are you working on now?

A: When my daughter was born, I was working on a new novel about a female journalist stationed in post-invasion Iraq as the country descends into civil war--who then loses her own mother to suicide. She ends up fleeing Baghdad to throw herself into marriage and motherhood in gentrifying Brooklyn.

As you might imagine, the novel required some deep diving into trauma and grief, and after my daughter arrived, I couldn’t even contemplate writing another word. But writing Girl in Glass helped me put a lot of my own demons to rest, and I think I’m finally ready to return to this story.

--Interview with Deborah Kalb