Deanna Fei on How Distressed Babies are Our Babies and the Inspiration Behind Girl in Glass

In October 2012, my second child arrived nearly four months premature. She weighed one pound, nine ounces. None of her vital organs were ready for the world outside my body.

Her face and body were obscured by tubes and wires. Her skin was reddish-purple and not quite intact; one doctor described it as “gelatinous.” The odds against her were already steep, and then she suffered a severe brain hemorrhage. Another doctor referred to her birth as “catastrophic.”

I had no choice but to cling to hope. When I reached into my daughter’s isolette, her tiny hand held on to mine.

Over three long months in the hospital, I watched my 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.

Even after she began to thrive, I found myself unable to tell the story of her birth, which hung over me like a shameful secret. Everything about her arrival still seemed so terrifying, isolating, and inexplicable that I couldn’t imagine ever celebrating her birthday.

Then, one year after my daughter came home—the same week she took her first steps—my husband’s boss, AOL CEO Tim Armstrong, publicly blamed “distressed babies” for forcing him to cut benefits for all employees. Armstrong slapped a price tag on my daughter’s life, depicting her as an exorbitant drag on the company’s bottom line and insinuating that her care was optional. His comments set off a national firestorm.

At first, all I could do was cower in shame. But as the phrase “distressed babies” became the subject of countless headlines, sparking debates about health care spending, corporate accounting, medical privacy, and much more, I realized that I needed to speak out to reclaim my daughter’s story. To defend her right to the medical care that saved her life; to refute the depiction of her as a deplorable burden; to show the humanity behind the numbers. To acknowledge her resilience, not only her damage.

I never imagined that her story would go viral. I never expected to receive an outpouring of messages from strangers across the country thanking me for speaking up on behalf of their children, too. Again and again, they told me that my child was their child. That she is all of our children.

They shared the stories of their own babies: babies born at 30 weeks, 28 weeks, 24 weeks. Babies whose births were precipitated by a car accident, an infection, no known cause at all. Babies who never came home, babies who survived with impairments, babies who seemed unscathed. They illuminated for me all the myriad, unexpected, and ever miraculous ways that human beings enter the world.

They also shared wrenching stories of being shamed and blamed for the premature births of their children—by employers, insurers, and society at large. And they urged me to continue to examine the critical issues that the “distressed babies” controversy had exposed.

This is how I came to write my new memoir, GIRL IN GLASS. It’s the story of my daughter’s harrowing journey and my discovery of parenthood at its most elemental, but it’s also an exploration of the issues that affect us all: the tremendous stigma that often confronts preemie parents, the history of how we care for babies who need intensive care, and how our data-obsessed society continues to question what their lives are worth. GIRL IN GLASS is a testament to the power of telling our stories—especially when those stories recount one of the most traumatic and transformative experiences life can offer.

One of those strangers who reached out to me was Nick Hall, the founder of Graham’s Foundation. Until I absorbed the messages of support and solidarity from him and so many others, I hadn’t understood the true importance of the mission of Graham’s Foundation: to help parents like me feel less alone.

The issue of how we care for premature infants is a reflection of our fundamental values as a society; it’s a measure of our basic humanity. That’s why I’m honored to work with Nick and the entire staff of Graham’s Foundation to help advocate for other preemie parents. I hope you’ll join me in sharing your story, learning more about what you can do, and why we all need to speak out on behalf of our children.

Deanna Fei preemie momDeanna Fei is the author of the new memoir GIRL IN GLASS and the award-winning novel A Thread of Sky. She was born in Flushing, New York, and graduated from Amherst College and the Iowa Writers’ Workshop. She has received a Fulbright Grant and a New York Foundation for the Arts fellowship. Her writing has appeared in the New York Times, TIME, Fortune, SlateThe Millions, and the Huffington Post, among other publications. She’ll be presenting the Hope award at the NYC Tinis for Preemies gala.

 

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