How My ‘Distressed Baby’ Defied the Odds, Shamed a CEO, and Taught Me the Essence of Love, Heartbreak, and Miracles
By Deanna Fei
Bloomsbury. 314 pp. $26
You may not immediately recognize the name Deanna Fei, but you’ll probably remember the offensive moniker attached to her now 2-year-old daughter, Mila: “distressed baby.” Last year, Mila, who was born extremely premature, became the focus of a media firestorm when Tim Armstrong, the chief executive of AOL, where her father worked for the AOL-owned Huffington Post, blamed the company’s decision to cut benefits on the medical costs caused by two “distressed babies.” He even put a price tag on their care: $1 million each.
Deanna Fei came forward as the mother of one of these children, writing an article in Slate in which she took Armstrong to task for, among other things, exposing “the most searing experience of our lives, one that my husband and I still struggle to discuss with anyone but each other, for no other purpose than an absurd justification for corporate cost-cutting.”
Armstrong eventually apologized, but Fei hasn’t quite backed down. In fact, she’s just published an impassioned, important book, “Girl in Glass,” in which she critiques not only Armstrong but also Arianna Huffington — who Fei says called her decision to speak out “very disappointing” — and the entire American health-care system. (A spokesman for Huffington recently told Fortune that she never pressured Fei.)
Yet this is not a fire-breathing polemic or a policy tract. It’s most effective, and affecting, as a mother’s memoir of how her life changed the day her daughter came into the world far too soon.
Fei, also the author of the novel, “A Thread of Sky” (2010), is an eloquent stylist who writes with immediacy and honesty. “I still don’t know how to make sense of my daughter as a near miss,” she confesses. And yet, she wonders, “How can anyone see her now and think she wasn’t meant to live?”
Writing in the present tense, Fei begins on the fateful October morning when everything changed for her — when she went from an expectant mother of one to a fretful, even reluctant mother of two. Her daughter, born at 25 weeks of gestation and weighing 1 pound, 9 ounces, “can’t cry or nurse or breathe,” she writes. “Her head is too large, her ears barely formed. Her legs look like those of a decrepit woman or a starving child, the skin shriveled and sagging over twigs of bone,” she adds. “Why shouldn’t it be? No part of her is supposed to function out here. She’s supposed to be part of me.”
Mila spends the next few months in the hospital, first in an isolette — the word “sounds like a compound of isolated and desolate,” Fei quips — in the intensive care unit, where she endures numerous procedures and setbacks. While reading about the trauma that unfolds over this volume’s first two-thirds, it is comforting to flip back to the cover from time to time to see Mila’s sweet, healthy face staring back at you.
Fei is unsparing — of herself and her husband (the journalist Peter S. Goodman, formerly of The Washington Post) and in her descriptions of the toll their daughter’s birth took on their relationship. She bares it all, from the details of her daughter’s condition to her own guilt, sadness and doubts about her ability as a mother. “I know that I can’t help but love her,” she writes, “because she is mine, because I am her mother. But I don’t think I can bear it. She needs a braver mother, a selfless mother, a heroic mother. A mother who could never wish to let her go.”
Fei wants to either grieve for her daughter or take home a perfectly healthy one. The “tiny reddish-purple creature entangled in tubes and wires” that lies before her is too difficult to bear. Who could begrudge her that angst or question her decisions?
In the last third of the book, we learn who. In the wake of the “distressed baby” controversy, Fei heard from doubters who sent her notes and commented on social media about her lack of gratitude for the corporate money that helped pay for her daughter’s care. “You are so lucky that your kid lived and I hope it grows up strong and healthy and is someday able to justify such a outrageous cost to keep it alive,” writes one. Others are less polite. Fei is both emboldened and humbled by the outrage. “A million dollars for a single, tiny, tenuous life might strike plenty of reasonable people as unfair, imprudent, or just plain excessive — including me,” she writes. (Fei says the figure was in fact closer to half that.) But, she adds, risk-pooling “is the purpose of insurance.” Part of the value of her book is that it provides a moving and persuasive illustration of this dry policy proposition.
Early on, doctors tell Fei to not get too excited when tiny Mila squeezes her mother’s finger. It’s just a reflex, they say. Two years later, after her daughter has grown into a gregarious toddler who loves whole milk, toy phones and jumping on the couch, Fei lets out a well-earned sigh. Never mind the doctors, the CEO and the naysayers. “She held on to my hand,” Fei writes. “Maybe that’s only a reflex, but so is the will to live.”
Nora Krug is a Book World editor who writes monthly about memoirs.