The Child We Almost Lost

Girl in Glass author Deanna Fei talks about her daughter's traumatic premature birth, her struggle to make sense of it, and the wisdom she wrested from the pain.

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On October 9, 2012, when Deanna Fei went into labor 25 weeks into her pregnancy, she thought she was having a miscarriage. But after an emergency cesarean, she was told that her one-pound, nine-ounce baby might survive, albeit with a chance of being severely disabled. The child eventually called Mila did, in fact, suffer a brain hemorrhage, a collapsed lung, and even stopped breathing—but she survived.

After Tim Armstrong, CEO of AOL (Deanna’s husband’s employer) announced that he was cutting the company’s retirement benefits because of the millions it had paid to help “distressed babies” (one of them Mila), Deanna was incensed—and moved to tell her daughter’s story.

Her piece went viral, and women around the world reached out to Deanna, inspiring her to write her new memoir, Girl in Glass. We asked the writer a few questions about Mila, now 2; her brother, Leo, 3; and what a typical day is like for the family today:

How are the kids now?
They’re great. Mila is getting all the mileage she can out of the terrible twos. She throws tantrums with the best of them. She grabs toys out of her big brother’s hands. She eats cookies double-fisted. And honestly, as difficult and challenging as she can be these days, there’s always a part of me that feels like she can have whatever she wants. She earned it.

Is there anything that you still have to worry about medically with Mila?
I get caught up in my parental anxieties like anyone else—time, space, money, one pair of hands….Am I doing this right? Is bedtime too late? But she has taught me to live in each moment and to know on a very visceral level that you can’t take any day for granted. When she was born, we didn’t know if we would ever have a next month, a next week, a next day with her—and she really taught me that if we’re together, and she’s holding my hand, and everyone is safe, that’s enough.

At what point after Mila was born did you decide you were going to write about the experience?
I had no idea how to tell her story, and I didn’t know if I would ever want to tell it. I didn’t even know if I could ever tell her how she was born. That’s a really traumatic and isolating place to be, because every parent tells that story to their child. That’s how a child’s universe begins—this is how I came into the world—but her story felt so tragic and uncertain that it sometimes seemed more like a death than a birth. We had no idea what her future would hold.

It was only when the AOL controversy erupted that it finally hit me: I needed to tell her story to show the humanity behind the headlines and to defend her right to the care that saved her life. I never imagined that the story would go viral. I never expected to hear from strangers around the world saying “Thank you for speaking up for me.” And I never expected the stories people told me about their own “distressed babies,” about suffering medical crises, about being shamed and blamed for being victims of circumstances they couldn’t control. They also showed me the importance of lifting the silence that often surrounds ordeals like these.

You wrote that it was hard to connect with people during the first few months of Mila's life. Why was that?
When Mila was born, people were very quick to say, “Well she’ll be fine.” And I wanted to believe that, but the fact is we had no idea if she would survive another day. “Prematurity” is still a hugely overlooked and misunderstood medical condition. It affects 1 out of 9 births in America, is the number one cause of disability among children, and the number one cause of death among newborns. So babies like my daughter face an extremely uncertain journey, and women whose babies face odds like that often feel a tremendous amount of stigma and isolation, because our culture tends to focus on things you can control. We think of pregnancy and motherhood as a series of checklists: If you do everything right, you can have this perfect baby. And I think I was probably guilty of thinking like that, too.

Initially, you blamed yourself for the premature birth, despite the fact that you could not have prevented it. What did it take for you to forgive yourself?
It actually wasn’t until I heard from all of these strangers that I realized: These things happen, and pregnancy and motherhood are inherently risky processes, which is also what makes them so miraculous. It wasn’t until I felt the support and solidarity from parents all over that I was finally able to forgive myself.

Was there one person in particular that you couldn’t have done this without?
I’ve always prided myself on being strong and independent and not showing the need for help. This was one of the first times in my life when all of that went out the window, because I couldn’t have survived a single day of this ordeal without a multitude of people to lean on—certainly including my husband. Nothing brings out both your strengths and your weaknesses as partners like facing a life-and-death situation day after day after day.

I leaned on my parents to bring meals and to babysit Leo and remind me of the foundation of love and support that I had, and I leaned on all the doctors and nurses who saved my daughter’s life again and again and again. I’ll never forget them. And when I brought my daughter back to visit the hospital after she turned 2, it was like we were with family. They saw her and they immediately knew her face, and I thought, these women’s hands took care of you more than mine could when you were born.

Have you been able to connect with the people who have reached out to you?
I founded a website to honor all of the stories that people shared with me and to show the power of making our voices heard, and to help raise awareness for the need for more compassion and justice in our healthcare system. It was important for me to create a forum where these stories weren't just siting in my inbox. I felt a sense of responsibility, because people were opening their hearts and revealing their deepest traumas to me in a way that was so moving and profound, and that helped me make sense of my own journey. And I personally responded to everyone who wrote to me. Because their stories haunted me, and they broke my heart again and again, but they also saved me.

What does a typical day look like for you now?
My kids wake up very early in the morning—sometimes 6, sometimes earlier. As soon as they wake up, they like to call “Mama, where are you?” So we get them up. They brush their teeth; they hug and kiss—they’re really loving, high-energy bundles of fun. It’s always snack time, whatever time of day it is. They always want pizza and ice cream.

There are always worries about any lingering effects that Mila might suffer from her birth. When she first came home I was always desperate to know when everything would feel normal. When can she just be an ordinary child? When can I stop worrying about the milestones? And I finally learned that if I’m focused on the milestones, she’s never going to pass the test. Because there’s always another milestone. So much of parenting these days is about focusing on the developmental worries, the ways that you can form your children into the ideal people that you want them to become. But there’s nothing like having a child on life support for three months to teach you how to live in each moment, not knowing if there will be another one.

This interview was edited and condensed for clarity and length.