A few months ago, I read on a preemie parent blog about the book Girl in Glass by Deanna Fei. I bought the book, but bought a few others after that one that I thought would be more interesting. As a result, I only finished this book today.
Deanna Fei was just five-and-a-half months pregnant when she inexplicably went into labor. Minutes later, she met her tiny baby who clung to life support inside a glass box. Fei was forced to confront terrifying questions: How to be the mother of a child she could lose at any moment. Whether her daughter
would survive another day–and whether she should. But as she watched her daughter fight for her life, Fei discovered the power of the mother-child bond at its most elemental.
A year after she brought her daughter home from the hospital, the CEO of AOL – her husband’s employer – blamed the beautiful, miraculously healthy little
girl for a cut in employee benefits and attached a price tag to her life, using a phrase, “distressed babies,” that set off a national firestorm.
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, 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.
As regular readers of my blog know, I was a preemie. My parents were concerned with my quality of life, asking some of the same questions Fei asks the doctors and herself. I cringed sometimes as I read Fei’s repetitive worrying about her daughter Mila’s health issues and their possible consequences, which sometimes led her to question whether she should be alive. At one point, Fei tells the doctors that she and her husband are not religious and do not have ethical issues with letting their child go if she faces severe disability. At times, I had a hard time reading on, because I was reminded of some of my interpretations of my parents’ reasoning on quality of life. For example, when Mila has a brain bleed, Fei repeats this over and over again: “What about her brain?”
Once Tim Armstrong, the CEO of AOL, uses Fei’s daughter as an excuse to cut employee benefits, Fei seems still not entirely accustomed to the idea that Mila is not just “generally okay” (Armstrong’s words) but is a blessing. Now I personally don’t like such terms to describe human beings either, but it seems that Fei is still a bit uncertain whether Mila should have been kept alive. This could be her post-traumatic guilt though.
However, Fei stands up for her daughter’s right to medical care. She investigates the issues surrounding health insurance and the right to medical care in the United States. Fei claims that, in every other developed country, the question would not be raised whether Mila is worth the alleged $1 million. Of course, I was reminded of the guidelines restricting treatment of premature babies to those born past 25 weeks gestation in the Netherlands. No employer may decide that certain babies aren’t worth the cost of treatment, but that doesn’t mean no such decisions are made. Similarly, while in the Netherlands employers don’t have access to health information (although they might if you buy your mandatory health insurance through an employer collective), governments do.
Fei cites a few court cases in which quality of life and the right to medical care were at stake. Unfortunately, she concludes that “obviously”, Sidney Miller, who was a preemie and now has multiple severe disabilities and is unable to walk, talk or feed herself, crosses the line of good enough quality of life. I disagree, but that’s a topic for another post. Fei uses her and other cases to discuss the idea that Mila or any other preemie should have to prove their worth. This idea, which is central to Armstrong’s reasoning and to Mila’s care, evoked a lot of emotion in me.
In general, I found Girl in Glass evoked the full spectrum of emotions in me. Mostly though, it evoked sadness and anger. Reading this book was in a way therapeutic, because Fei articulates the sentiments so well that I’ve been feeling for a long time. She also does a great job of investigating all the issues surrounding the health care system when it comes to premature babies.
Title: Girl in Glass: How My “Distressed Baby” Defied the Odds, Shamed a CEO, and Taught Me the Essence of Love, Heartbreak, and Miracles
Author: Deanna Fei
Publisher: Bloomsbury Publishing
Publication Date: July 2015