This article first appeared in Preemie Babies 101 - Hand to Hold in September 2015.  

 

Deanna Fei, author of Girl in Glass (Bloomsbury Books, 2015), didn’t seek national attention. Fei’s four month NICU stay with her daughter Mila led to a national uproar when AOL CEO Tim Armstrong identified her daughter as a “distressed baby.” The “distressed baby” claim was used to defend Tim Armstrong’s decision to decrease retirement spending for AOL employees, including Fei’s husband Peter. Fei’s first child was born full term and without complication. Thirteen months later she had an entirely different birthing experience with her daughter Mila at 25-weeks gestation.

A journalist and author by trade, Deanna Fei spends the first three-quarters of her book delicately weaving the story of her full-term, healthy son, Leo, to the uncertainty of her daughter Mila’s birth at 25-weeks gestation. She captivates the reader in a heartfelt, yet at times doubt-filled, four-month journey through the NICU. Fei writes, “the only way to brave this limbo is simply to bear witness. To bear witness is to know her as she is, no more and no less. To know her is to love her, because she is mine, because I am her mother. The more I love her, the harder it gets.” (Fei, 2015)

By the time Fei’s “distressed baby” captures national attention in her book, readers have engaged in Mila’s four-month NICU stay and the roller-coaster ride, Mila’s NICU graduation and thirteen months at home recovering from her micro-prematurity.

As Fei discovers her new normal with a 2-year-old son and a 1-year-old daughter, she’s unexpectedly brought to the center of media attention due to Tim Armstrong’s public gaffe as to the value of her child’s life. In a town hall meeting with AOL employees, Armstrong defends the 401k rollbacks as a cost-saving initiative due to healthcare expenses of two “distressed babies.” Armstrong’s gaffe led to a media spectacle that captured the world’s attention on all social media outlets. News channels reported the story, bringing to light the underlying fears of employees losing benefits or employers determining the health benefits of an employee based on their health history.

Fei spends the final chapters of her book highlighting the history of neonatology. Informative and interesting, she effectively speaks to NICU graduate parents who, like me, are curious to the political and developmental milestones leading to modern neonatology.

Fei’s book far exceeds her goal in drawing the reader in to a micro-prematurity journey mirroring the experience with public media outcry. The book successfully engages a reader in to the heartfelt uncertainty of her micro-prematurity journey, giving voice to what NICU parents often feel but cannot express.

Despite the opportunity to do so, Fei never once expresses animosity or anger at Tim Armstrong’s “distressed baby” comment. In fact, she seeks to understand as well as be understood, publicly sharing her experience and teaching society what a micro-premature journey is like with humility and honor. Her book is infused with character and forgiveness and it is this taking the higher road that weaves the emotions of her NICU journey with the emotions of a media firestorm lifting it with grace and beauty.

To find out more about Deanna Fei and her book, Girl in Glassvisit her website.