In October 2012, my second child was born so prematurely and inexplicably that the doctors referred to her birth as “catastrophic.” Over three long months in the hospital, I watched my tiny daughter fight for her life. Day by day, I learned how to be the mother of a child for whom nothing was guaranteed—not even the next breath.
One year after my daughter came home, just as my family was finally recovering from the trauma of her birth, my husband’s CEO—Tim Armstrong of AOL—publicly claimed that two employees’ “distressed babies” had forced him to cut retirement benefits. In portraying those children as outsized burdens on the corporate balance sheets, he disclosed details that allowed my husband’s co-workers to immediately identify our family—and set off a national firestorm.
As the phrase “distressed babies” became the subject of countless headlines and tweets, my first instinct was to cower in shame. But I felt compelled to speak out to defend my daughter’s basic humanity.
The story went viral, Armstrong apologized, and I forgave him. Then, as the firestorm subsided, I received an outpouring of messages from strangers across the country who called upon me to recognize that “distressed babies” had exposed much more than my family’s private ordeal.
So many people shared heartbreaking stories of their own. Stories of navigating the journeys of their own “distressed babies”—co-opting the term with dignity and pride. Stories of being treated as deplorable burdens on society because of their need for medical care. Stories of being targeted by employers for suffering medical crises, many of them echoing the same word: shame.
All of these people showed me the power of telling our stories. They helped me cast off the shame, fear, and guilt that had haunted me since my daughter’s birth. And they taught me the most important lesson I’ll ever learn: that each child is all of our children.
They also inspired me to create this site to honor those stories that people had entrusted to me and to help raise awareness of ordeals like these. As human beings, we are all vulnerable to suffering a medical crisis. No one deserves to be shamed for needing medical care.
And they helped inspire me to write a memoir to explore the full story of my daughter’s journey, my discovery of parenthood at its most elemental, and the question of what a human life is worth.
GIRL IN GLASS: Hailed as “courageous,” “transcendent,” and “astonishing," GIRL IN GLASS is the riveting story of one child’s harrowing journey and a powerful distillation of parenthood. With incandescent prose and an unflinching eye, Deanna Fei explores the value of a human life: from the spreadsheets wielded by cost-cutting executives to the insidious notions of risk surrounding modern pregnancy; from the wondrous history of medical innovation in the care of premature infants to contemporary analyses of what their lives are worth; and finally, to the depths of her own struggle to make sense of her daughter’s arrival in the world. Above all, GIRL IN GLASS is a luminous testament to how love takes hold when a birth defies our fundamental beliefs about how life is supposed to begin.
“My Baby and AOL’s Bottom Line”: Read the essay that went viral worldwide and sparked national conversations about medical privacy, corporate accounting, employer-sponsored health care, and the value of a human life.
Photos of Mila’s journey
More about Deanna Fei