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Girl in Glass: How My "Distressed Baby" Defied the Odds, Shamed a CEO, and Taught Me the Essence of Love, Heartbreak, and Miracles
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 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--set off a national firestorm about the children he had called “distressed babies.” By blaming the beautiful, miraculously healthy little girl for a cut in employee benefits, he attached a price tag to her life.
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 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.
A year after she brought her daughter home from the hospital, the CEO of AOL--her husband's employer--set off a national firestorm about the children he had called “distressed babies.” By blaming the beautiful, miraculously healthy little girl for a cut in employee benefits, he attached a price tag to her life.
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 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.
320 pages, Hardcover
First published June 2, 2015
32 people are currently reading
983 people want to read
About the author
Deanna Fei
4 books49 followersDeanna Fei is the author of the new memoir GIRL IN GLASS (Bloomsbury), hailed as “extraordinarily beautiful” by NPR and “an impassioned, important book” by the Washington Post. GIRL IN GLASS was recently featured on PBS NewsHour, Melissa Harris-Perry on MSNBC, and NPR’s All Things Considered, among other outlets.
In 2014, Fei's essay, “My Baby and AOL’s Bottom Line,” went viral worldwide and sparked national conversations about medical privacy, corporate accounting, employer-sponsored health care, and what a human life is worth. She appeared on NBC’s the Today show, the CBS Evening News, CNN’s Erin Burnett Show, MSNBC’s News Nation, and NPR’s Here and Now to discuss her decision to speak about her “distressed baby.”
Fei currently works with March of Dimes to help raise awareness of the true tolls of prematurity and Graham’s Foundation to help advocate for parents of premature babies. She recently founded OurDistressedBabies.org, a forum where people can share their own stories to raise awareness of the need for more compassion and justice in our healthcare system.
Fei is also the author of the award-winning novel A Thread of Sky (Penguin, 2010). 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, Slate, The Millions, and the Huffington Post, among other publications.
Fei has taught and counseled at-risk youth through the Asian American Writers’ Workshop, CASES, and New York City public schools. She regularly gives talks at forums such as the Museum of Chinese in America, the F. Scott Fitzgerald Literary Conference, the Chicago Tribune Printers Row Lit Fest, and schools and universities nationwide. She lives in Brooklyn with her husband and two children.
In 2014, Fei's essay, “My Baby and AOL’s Bottom Line,” went viral worldwide and sparked national conversations about medical privacy, corporate accounting, employer-sponsored health care, and what a human life is worth. She appeared on NBC’s the Today show, the CBS Evening News, CNN’s Erin Burnett Show, MSNBC’s News Nation, and NPR’s Here and Now to discuss her decision to speak about her “distressed baby.”
Fei currently works with March of Dimes to help raise awareness of the true tolls of prematurity and Graham’s Foundation to help advocate for parents of premature babies. She recently founded OurDistressedBabies.org, a forum where people can share their own stories to raise awareness of the need for more compassion and justice in our healthcare system.
Fei is also the author of the award-winning novel A Thread of Sky (Penguin, 2010). 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, Slate, The Millions, and the Huffington Post, among other publications.
Fei has taught and counseled at-risk youth through the Asian American Writers’ Workshop, CASES, and New York City public schools. She regularly gives talks at forums such as the Museum of Chinese in America, the F. Scott Fitzgerald Literary Conference, the Chicago Tribune Printers Row Lit Fest, and schools and universities nationwide. She lives in Brooklyn with her husband and two children.
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Displaying 1 - 30 of 79 reviews
August 6, 2015
I don't recommend doing what I did if you are at all ashamed about crying in public. With my own seven month old at home, most of my reading time occurs during my commute. I'm also still surprisingly emotional in my new mom state. The combination means I had to fight back tears or just let them come while sitting in train cars and on buses. But I couldn't NOT read this book. Every day that I was reading it, I couldn't wait to pick it up again. After my own experience with a complicated pregnancy, a late preterm infant, and some time in the NICU, Fei wrote about things that I could connect with, but I don't think the reader needs to have any kind of of personal connection in order to get swept away by this book.
Fei is a novelist, but I suspect she is actually a poet. Her telling of this deeply personal story was repetitive and beautiful in the way she kept diving back into herself as she worked out her own reconciliation with the birth of her daughter. She was brutally honest in her writing as she moved through the stages of accepting her daughter's "catastrophic birth," letting herself become attached to her daughter, and ultimately defending her fiercely (but graciously!) when Tim Armstrong blamed them in part for changes to AOL employee benefits. If there is any question about genetics and a tiny one pound baby's ability to be fierce and fight, well, just look at that baby's mom.
Most of the book is a memoir and a coming to terms with what happened to her family when she suddenly went into labor at just 25 weeks (can you imagine!...i spent two months on bedrest to prevent preterm labor and knew I would have a c-section at the end of it in order to protect both my baby's life and mine...but Fei had absolutely no warning and no way to prepare). Not only that, at the time of her daughter's sudden birth, her son was just 13 months old. Fei deftly wove in stories of her son and their life at home between the stories of visits to the NICU and her struggles to accept what had happened with her daughter. The laughter of those sections helped counteract the tears.
Just as she came to terms with her daughter's birth, Tim Armstrong fingered her family while making a public announcement about changes to employee benefits. With the support of her husband, Fei decided to speak out. The final quarter of this book is a recounting of that experience and an extended essay about health care privacy. It's because of this that this book is for everyone regardless of whether you have children or not, whether you have any sort of complicated birth story or not. If the first part makes you feel at all sad, then hopeful, partly fascinated, and then like a cheerleader for Fei's family, the last part will make you angry, as if there isn't enough about health care in the United States to make an American citizen angry; foreign readers will undoubtedly feel perplexed.
Thank you, Deanna Fei, for writing this book. I hope many, many people read it.
Fei is a novelist, but I suspect she is actually a poet. Her telling of this deeply personal story was repetitive and beautiful in the way she kept diving back into herself as she worked out her own reconciliation with the birth of her daughter. She was brutally honest in her writing as she moved through the stages of accepting her daughter's "catastrophic birth," letting herself become attached to her daughter, and ultimately defending her fiercely (but graciously!) when Tim Armstrong blamed them in part for changes to AOL employee benefits. If there is any question about genetics and a tiny one pound baby's ability to be fierce and fight, well, just look at that baby's mom.
Most of the book is a memoir and a coming to terms with what happened to her family when she suddenly went into labor at just 25 weeks (can you imagine!...i spent two months on bedrest to prevent preterm labor and knew I would have a c-section at the end of it in order to protect both my baby's life and mine...but Fei had absolutely no warning and no way to prepare). Not only that, at the time of her daughter's sudden birth, her son was just 13 months old. Fei deftly wove in stories of her son and their life at home between the stories of visits to the NICU and her struggles to accept what had happened with her daughter. The laughter of those sections helped counteract the tears.
Just as she came to terms with her daughter's birth, Tim Armstrong fingered her family while making a public announcement about changes to employee benefits. With the support of her husband, Fei decided to speak out. The final quarter of this book is a recounting of that experience and an extended essay about health care privacy. It's because of this that this book is for everyone regardless of whether you have children or not, whether you have any sort of complicated birth story or not. If the first part makes you feel at all sad, then hopeful, partly fascinated, and then like a cheerleader for Fei's family, the last part will make you angry, as if there isn't enough about health care in the United States to make an American citizen angry; foreign readers will undoubtedly feel perplexed.
Thank you, Deanna Fei, for writing this book. I hope many, many people read it.
August 23, 2015
This book is more important for Americans to read than most will ever know.
Yes it is an often painful, challenging, heartbreaking, heart warming story of a tiny baby girl born too soon and how her birth and fight changed those around her and many more.
It is also an eye opening account about how our health is a commodity in the United States. How using more than "your share" is shameful. How easy it is for our medical systems to completely bankrupt and ruin your life.
We should all read this book. How much is your life worth?
Yes it is an often painful, challenging, heartbreaking, heart warming story of a tiny baby girl born too soon and how her birth and fight changed those around her and many more.
It is also an eye opening account about how our health is a commodity in the United States. How using more than "your share" is shameful. How easy it is for our medical systems to completely bankrupt and ruin your life.
We should all read this book. How much is your life worth?
October 15, 2015
I chose to read this book to better understand the work that my daughter, a NICU nurse, does. Deanna Fei whose daughter Mila was born extremely prematurely, praises all of the medical professionals who cared for her child. As I read this memoir, I felt that I was living every anxious moment with Fei as she kept vigil over her child. This experience will make all parents grateful for healthy children who have not had to overcome such odds and will summon admiration for those who never gave up hope that their babies would survive to lead normal, healthy lives.
September 23, 2015
I did not enjoy this book and I would not recommend it to family or friends.
To be fair, my opinion of it should not affect my rating or review. It is an extremely well written book, thoroughly researched and backed by facts. It is a frank and honest memoir of the changes in the heart of a woman who grows up considerably as she learns to love and fight for her daughter.
I was disappointed in the brief treatment of Tim Armstrong's comment about "distressed babies" and their effect on the cost of employee medical plans. It was almost a non-event, with an apology given immediately and immediately accepted, with a reversal of the decision to change the retirement plan employer contributions.
I did not feel that this issue was dealt with fairly. In zero-sum medical plans, all medical benefits are paid for by premiums. If it is an expensive year for claims, premiums increase the next year. If the treatment for the 2 distressed babies cost $2 million, then the cost shared among 5000 employees would be $400. If premiums go up $400 in one year, employees deserve to know the reason.
Most labor unions and employee groups would vote to put this additional cost in the future by a reduced retirement plan than have $400 added to their premiums immediately.
Tim Armstrong was explaining to his employees the method of dealing with these costs. True, his remark lacked tact and caused an uproar in the media. But it does not change the facts. Whether it is a distressed baby or a drunk teenager diving recklessly into a swimming pool or a patient with AIDS or a senior undergoing an organ transplant, the costs must be borne by the employee premiums, and they must be explained.
I think the author overreacted to his comments and failed to see them realistically.
However, the book describes vividly the treatment of babies in NICU, the effect on the family, the uncertain future and the difficulty in making the best decisions about treatment.
The author explores thoroughly aspects of medical privacy and the problems of employees obtaining and/or maintaining employment once information about a medical condition in a family member is discovered... which is basically as soon as the claim is processed. I wish the author had gone into this in more detail. It is a much more serious problem than she had. Her husband was not fired to avoid paying medical costs for her baby.
She also examines thoroughly the history of decision-making in the lives of premature intants, their futures, possible disabilities and costs. She makes very good points in comparing the cost of intensive care treatment for babies to that of adults with terminal diseases. Her argument is consistent and effective.
Of course, she does not deal with the problem of paying the bills. Someone must pay exorbitant medical costs. Yes, she had a contract, the company honored the contract and paid the claims, but still, it was her husband's co-workers who paid the bill. She somehow does not see the reality of the situation. She could afford preschool care, a babysitter, taxis, entertainment and dining during this crisis and also pay her part of the medical bills without going bankrupt. But for the average earner, a $400 premium increase in one year is very difficult.
I wish that she had researched solutions to this problem, such as caps to medical treatment that are part of the policy, with options to purchase extended coverage if desired. I am not saying that the life of the baby was not worth $1 million. I am saying that there is a way to balance health plans that is more acceptable to everyone.
This is a problem that is much more serious than Tim Armstrong's comments. There needs to be more protection of privacy in medical information so that companies are not allowed to know the medical claims of its employees. Laws also need to be made to protect people's employment so that they cannot be fired because they are too expensive to the medical plan.
I would have liked to see more about this issue.
Yet, this book is very readable, the author is very expressive of her emotions and very effective in her writing style. It is thorough almost to being tedious in some spots.
But I find it hard to imagine a book that covered more information and more issues in 300+ pages than this book.
If any of these topics interest you, then the book is well worth reading.
To be fair, my opinion of it should not affect my rating or review. It is an extremely well written book, thoroughly researched and backed by facts. It is a frank and honest memoir of the changes in the heart of a woman who grows up considerably as she learns to love and fight for her daughter.
I was disappointed in the brief treatment of Tim Armstrong's comment about "distressed babies" and their effect on the cost of employee medical plans. It was almost a non-event, with an apology given immediately and immediately accepted, with a reversal of the decision to change the retirement plan employer contributions.
I did not feel that this issue was dealt with fairly. In zero-sum medical plans, all medical benefits are paid for by premiums. If it is an expensive year for claims, premiums increase the next year. If the treatment for the 2 distressed babies cost $2 million, then the cost shared among 5000 employees would be $400. If premiums go up $400 in one year, employees deserve to know the reason.
Most labor unions and employee groups would vote to put this additional cost in the future by a reduced retirement plan than have $400 added to their premiums immediately.
Tim Armstrong was explaining to his employees the method of dealing with these costs. True, his remark lacked tact and caused an uproar in the media. But it does not change the facts. Whether it is a distressed baby or a drunk teenager diving recklessly into a swimming pool or a patient with AIDS or a senior undergoing an organ transplant, the costs must be borne by the employee premiums, and they must be explained.
I think the author overreacted to his comments and failed to see them realistically.
However, the book describes vividly the treatment of babies in NICU, the effect on the family, the uncertain future and the difficulty in making the best decisions about treatment.
The author explores thoroughly aspects of medical privacy and the problems of employees obtaining and/or maintaining employment once information about a medical condition in a family member is discovered... which is basically as soon as the claim is processed. I wish the author had gone into this in more detail. It is a much more serious problem than she had. Her husband was not fired to avoid paying medical costs for her baby.
She also examines thoroughly the history of decision-making in the lives of premature intants, their futures, possible disabilities and costs. She makes very good points in comparing the cost of intensive care treatment for babies to that of adults with terminal diseases. Her argument is consistent and effective.
Of course, she does not deal with the problem of paying the bills. Someone must pay exorbitant medical costs. Yes, she had a contract, the company honored the contract and paid the claims, but still, it was her husband's co-workers who paid the bill. She somehow does not see the reality of the situation. She could afford preschool care, a babysitter, taxis, entertainment and dining during this crisis and also pay her part of the medical bills without going bankrupt. But for the average earner, a $400 premium increase in one year is very difficult.
I wish that she had researched solutions to this problem, such as caps to medical treatment that are part of the policy, with options to purchase extended coverage if desired. I am not saying that the life of the baby was not worth $1 million. I am saying that there is a way to balance health plans that is more acceptable to everyone.
This is a problem that is much more serious than Tim Armstrong's comments. There needs to be more protection of privacy in medical information so that companies are not allowed to know the medical claims of its employees. Laws also need to be made to protect people's employment so that they cannot be fired because they are too expensive to the medical plan.
I would have liked to see more about this issue.
Yet, this book is very readable, the author is very expressive of her emotions and very effective in her writing style. It is thorough almost to being tedious in some spots.
But I find it hard to imagine a book that covered more information and more issues in 300+ pages than this book.
If any of these topics interest you, then the book is well worth reading.
August 6, 2015
"Girl in Glass" is the story of Deanna Fei and her family, who were thrust into the media spotlight a couple years ago when the CEO of her husband's company stated that her child was one of the reasons that he had to cut benefits for the company. In "Girl in Glass," we see how Fei deals with the super early birth of her daughter, the hurdles that brings, and the hurdles that are brought on by the CEO with no tact. This is an incredibly powerful book that drew me in.
This book really hit home for me. Frequent visitors to A Bookish Affair probably know that I had identical twin girls in April. I did not write much about my fear while I was pregnant but I was absolutely terrified while carrying my girls. I knew that my pregnancy was high risk off the bat because of carrying twin girls. I was always quite jealous of those lucky moms only carrying one baby who seemed to effortlessly be able to carry on with their lives while pregnant. This book shows that the grass is not always greener on the other side. There are people with "normal" pregnancies where the difficult can still occur.
Fei went into labor at five and a half months pregnant and had a little girl. She takes us into the NICU, a place that is both amazing and heartbreaking, sometimes at the same time. I thought there was a good chance that my girls would end up in the NICU. Fei talks of her guilt and worry over having done something that made her daughter come so early. Having gone through that myself to some degree, she really captured that well. You really do feel helpless and like there had to have been something you could have done differently. It is hard to explain all of those feelings that you go through but Fei explains it perfectly.
This book pulled me in hard. You feel for the entire family. Without the CEO debacle, the whole situation still would have been so incredibly difficult. This book shed a light on how benefits may not be as beneficial as they could be for families in need. Those who care about families and worker's benefits will be drawn to this book. Those who are looking for a real and raw memoir will also be drawn to this one! What a read!
This book really hit home for me. Frequent visitors to A Bookish Affair probably know that I had identical twin girls in April. I did not write much about my fear while I was pregnant but I was absolutely terrified while carrying my girls. I knew that my pregnancy was high risk off the bat because of carrying twin girls. I was always quite jealous of those lucky moms only carrying one baby who seemed to effortlessly be able to carry on with their lives while pregnant. This book shows that the grass is not always greener on the other side. There are people with "normal" pregnancies where the difficult can still occur.
Fei went into labor at five and a half months pregnant and had a little girl. She takes us into the NICU, a place that is both amazing and heartbreaking, sometimes at the same time. I thought there was a good chance that my girls would end up in the NICU. Fei talks of her guilt and worry over having done something that made her daughter come so early. Having gone through that myself to some degree, she really captured that well. You really do feel helpless and like there had to have been something you could have done differently. It is hard to explain all of those feelings that you go through but Fei explains it perfectly.
This book pulled me in hard. You feel for the entire family. Without the CEO debacle, the whole situation still would have been so incredibly difficult. This book shed a light on how benefits may not be as beneficial as they could be for families in need. Those who care about families and worker's benefits will be drawn to this book. Those who are looking for a real and raw memoir will also be drawn to this one! What a read!
June 30, 2016
Beautiful book. Moving and illustrative, Fei talks about her baby's 3 month stay in the NICU after being born at 25w3d, and about her own struggle as a mother during that time, and about the shock of being in the limelight after the CEO of AOL cuts employee benefits because of two "distressed babies" who cost the company's self-insured health plan "too much" - one of the "distressed babies" being her child. About 2/3 of the book is a meditative reflection on baby Mila's NICU stay and her attendant medical issues - the other 1/3 is a more straight ahead discourse on health care in the US, and the AOL situation, and health care costs/financing, and HIPAA concerns. These two paragraphs struck me - though the sentiment within is a tangent from the meat of the book:
"In fact, NICUs are actually extraordinarily cost-effective once we draw a more logical comparison: not between babies who need intensive care and babies who don't, but between babies and adults who need intensive care. While over 80 percent of ICU resources are spent on adults who go on to die, in the NICU more than 80 percent of resources are spent on babies who ultimately service - even among the tiniest babies. This is partly because the babies who will die tend to die quickly, regardless of heroic medical treatment.
Yet NICUs are often depicted as extravagant departments in a way that other high-cost hospital units, such as orthopedics and oncology, are not. Patients who have spinal cord injuries or need coronary bypass surgery are roughly as expensive as the average NICU patient, but we don't generally demand that such categories of people prove themselves deserving of medical care the way we demand that premature infants justify the costs of their existence."
Worth reading.
"In fact, NICUs are actually extraordinarily cost-effective once we draw a more logical comparison: not between babies who need intensive care and babies who don't, but between babies and adults who need intensive care. While over 80 percent of ICU resources are spent on adults who go on to die, in the NICU more than 80 percent of resources are spent on babies who ultimately service - even among the tiniest babies. This is partly because the babies who will die tend to die quickly, regardless of heroic medical treatment.
Yet NICUs are often depicted as extravagant departments in a way that other high-cost hospital units, such as orthopedics and oncology, are not. Patients who have spinal cord injuries or need coronary bypass surgery are roughly as expensive as the average NICU patient, but we don't generally demand that such categories of people prove themselves deserving of medical care the way we demand that premature infants justify the costs of their existence."
Worth reading.
May 30, 2018
***I received a free copy of this book via Netgalley in exchange for an honest review**
I found the introduction of this book to be particularly powerful. The writing is descriptive, and commanding. I found this to be raw, and blunt. Given that I was also a girl in a glass box, born two moths prematurely myself, I found the story easy to relate to.
The tone changes to what I would call more of a miracle story at about 60 percent through, so that's different, but I still enjoyed the book overall.
I found the introduction of this book to be particularly powerful. The writing is descriptive, and commanding. I found this to be raw, and blunt. Given that I was also a girl in a glass box, born two moths prematurely myself, I found the story easy to relate to.
The tone changes to what I would call more of a miracle story at about 60 percent through, so that's different, but I still enjoyed the book overall.
September 5, 2015
Really intriguing, interesting read. I had read about Deanna and her daugbter in a article online, so when I came across the book I had to check it out. And I'm so glad I did. Deanna put a human (and a mother's) perspective on things (but man oh man, I only got through certain sections of this book knowing that her daughter eventually gets released from the NICU and is "okay" in the end). I found the last chapter, with all the medical and insurance information and details about similar cases quite interesting.
March 7, 2016
This is an astounding and powerful book for any parent. I passed it by on the library shelves several times because I thought it would be too sad and/or trite. Instead it's a moving, but very grounded book about a family's experience in an extremely precarious, uncertain medical circumstance, followed by their public shaming in an example of crass, callow corporate greed. I salute the author for sharing her story and writing it so well, without any sentimental artiface and hewing close to the dark moments that must be the truth in a situation like this one.
October 30, 2015
Essential reading for NICU nurses, neonatologists, OB/GYNs and anyone touched by premature birth. So much of the NICU experience is isolating, panic inducing, and difficult for anyone who hasn't been there to understand. Most of what I've seen on the topic has either been a medical guide or a children's book to read to siblings of premies. I'm so glad Fei decided to write plainly about her experience. It will certainly help parents of premies and all those who love them.
September 19, 2015
Excellent handling of the subject.....prematurity is a foreign land to most people. Very informative.
July 16, 2019
This has been on my to-read list for a while now, but recently an acquaintance of mine had an early preemie and that brought this up the ranks. It was nice to read about the physical and emotional struggles of this baby and her parents as a window into this world that I know nothing of. The CEO part of the story was thought provoking and disturbing and made me very grateful for the benefits I enjoy in my place of work.
August 23, 2015
Read this book!!! Really. You may vaguely recall this story and this woman. In early 2014, AOL CEO Tim Armstrong caused a firestorm when he talked about "distressed babies" as an excuse to cut benefits. The parents of one of those babies, Deanna Fei and her husband Peter (who was employed with The Huffington Post/AOL at the time) came forward and talked about their baby Mila. Or rather, her husband tried to privately talk to his boss about the mess and Fei came forward to give interviews. This is mainly her story.
If you have read her article about her baby (Mila), then this isn't much of a spoiler, as Mila survived. The book is the retelling of Mila's birth to the aftermath of Armstrong's company call. What was an entirely uneventful, "normal" pregnancy became abnormal as Fei suddenly went into labor. Mila was born at 25 weeks and it was considered "catastrophic." She could live. She could die. She could be severely disabled, with anything from brain damage to cerebral palsy to needing glasses to blindness and any other host of issues. Fei and her husband rightfully ask the doctors, on occasion, what are the chances that Mila will be mildly to severely disabled?
To be honest, much of the book is downright harrowing and intense. Will Mila live? Poor Fei and her husband are stuck in this horrible, agonizing purgatory where every gram of weight gained is a triumph and any number of things can go wrong (and often do). And even after Mila goes home and gradually blossoms into a typical baby with older brother Leo, then there's the Armstrong's call.
Their privacy has been violated, if not legally, then ethically. Fei does not know how Armstrong got this information. While she admits that some of this could have been easily known via her husband taking paternity leave, his absences, etc. there's still what appears to be a skittering of ethical and privacy lines.
Fei also admits that there are certainly issues surrounding insurance and health care. Mila turned out (knock on wood) okay. Many babies don't. In Texas, a set of parents did not want treatment for their daughter. They were overridden by the hospital, and their daughter, who survived, would grow onto need constant care, feeding, has brain damage, seizures, etc. Would have been better for this family to have let their child die?
Fei doesn't have the answers. She's just telling her story (and while her husband and family do appear, this is told from her own perspective). Overall I thought this was an excellent read and at the moment is the best book I've read this year. It was quite painful to live through Fei's experiences and emotions. There are a few other reviews that found this self-serving and think it's ironic that she's telling her story after talking about having her family's privacy violated. Well, as far as I'm concerned it's her story, her right. And there are huge questions that need to be considered. The book is much better when it focuses on her and her family vs. discussing privacy rights/health care issues not directly related to Mila. The other information was interesting, but I'll admit my attention drifted in those sections quite a bit.
It also puts some perspective on her first book, which was a work of fiction. I really didn't like it ('A Thread of Sky') very much, and was surprised at how much I liked her original post about her baby but really hated that book. It turns out it was worked on/completed between her two pregnancies, so it was a bit rushed.
Even if you hate children, don't have any, don't want any, etc. I suggest you read this book. There are larger questions about healthcare, insurance, patient privacy, etc. and it's stories like Mila's that need to be a part of that. And this book is not all doom and gloom. While much of the book was tough to read, there moments of humor and hilarity. Whether it's observations about her young son Leo trying to romance attractive adult women, observations about her marriage, etc. it's a compelling read.
It had the same (un)fortunate release date shared with 'Go Set a Watchman' and Ta-Nehisi Coates's 'Between the World and Me' and was lost between the GSAW hype and the news about the latter. But it definitely deserves a look for anyone into memoirs, books about healthcare, insurance, or want to know more after reading Fei's original post. I look forward to reading her next book.
If you have read her article about her baby (Mila), then this isn't much of a spoiler, as Mila survived. The book is the retelling of Mila's birth to the aftermath of Armstrong's company call. What was an entirely uneventful, "normal" pregnancy became abnormal as Fei suddenly went into labor. Mila was born at 25 weeks and it was considered "catastrophic." She could live. She could die. She could be severely disabled, with anything from brain damage to cerebral palsy to needing glasses to blindness and any other host of issues. Fei and her husband rightfully ask the doctors, on occasion, what are the chances that Mila will be mildly to severely disabled?
To be honest, much of the book is downright harrowing and intense. Will Mila live? Poor Fei and her husband are stuck in this horrible, agonizing purgatory where every gram of weight gained is a triumph and any number of things can go wrong (and often do). And even after Mila goes home and gradually blossoms into a typical baby with older brother Leo, then there's the Armstrong's call.
Their privacy has been violated, if not legally, then ethically. Fei does not know how Armstrong got this information. While she admits that some of this could have been easily known via her husband taking paternity leave, his absences, etc. there's still what appears to be a skittering of ethical and privacy lines.
Fei also admits that there are certainly issues surrounding insurance and health care. Mila turned out (knock on wood) okay. Many babies don't. In Texas, a set of parents did not want treatment for their daughter. They were overridden by the hospital, and their daughter, who survived, would grow onto need constant care, feeding, has brain damage, seizures, etc. Would have been better for this family to have let their child die?
Fei doesn't have the answers. She's just telling her story (and while her husband and family do appear, this is told from her own perspective). Overall I thought this was an excellent read and at the moment is the best book I've read this year. It was quite painful to live through Fei's experiences and emotions. There are a few other reviews that found this self-serving and think it's ironic that she's telling her story after talking about having her family's privacy violated. Well, as far as I'm concerned it's her story, her right. And there are huge questions that need to be considered. The book is much better when it focuses on her and her family vs. discussing privacy rights/health care issues not directly related to Mila. The other information was interesting, but I'll admit my attention drifted in those sections quite a bit.
It also puts some perspective on her first book, which was a work of fiction. I really didn't like it ('A Thread of Sky') very much, and was surprised at how much I liked her original post about her baby but really hated that book. It turns out it was worked on/completed between her two pregnancies, so it was a bit rushed.
Even if you hate children, don't have any, don't want any, etc. I suggest you read this book. There are larger questions about healthcare, insurance, patient privacy, etc. and it's stories like Mila's that need to be a part of that. And this book is not all doom and gloom. While much of the book was tough to read, there moments of humor and hilarity. Whether it's observations about her young son Leo trying to romance attractive adult women, observations about her marriage, etc. it's a compelling read.
It had the same (un)fortunate release date shared with 'Go Set a Watchman' and Ta-Nehisi Coates's 'Between the World and Me' and was lost between the GSAW hype and the news about the latter. But it definitely deserves a look for anyone into memoirs, books about healthcare, insurance, or want to know more after reading Fei's original post. I look forward to reading her next book.
December 15, 2021
This book tells such an important story that far too many Americans experience through the healthcare system. Everyone who works in healthcare or wants to learn more about the flaws of American healthcare/the patient experience/motherhood should definitely read this. It’s about a family’s emotional and frankly traumatizing experience with having an extremely premature baby who needed months in the NICU to live - and how the intersection of human life and corporate greed changed their life and that of many others. The story will leave you emotional, enraged, and hopefully ready to act on it what’s wrong with our health system!
September 26, 2015
Girl in Glass is a non-fiction book written by the mother of one of the "distressed babies" cited by AOL chief executive Tom Armstrong in 2014 as his excuse for cutting pension benefits for his employees. Armstrong, who is needless to say highly compensated, sought to cut benefits for all employees during a time of high prosperity for AOL, and at a press conference cited the health costs associated with two "distressed babies" as the reason. Fei, whose husband worked as a senior editor for HuffPo at the time, is the mother of one of the two babies. Fei's daughter was born extremely premature but is now a healthy toddler, and she wrote the book to unpack what actually happened. As she notes, it is on its face ridiculous to cite the costs of these babies as the basis for anything at all because covering such events is the purpose of health insurance in the first place. Fei writes eloquently and with passion about the birth of her daughter, the very real struggles she and her husband faced as they tried to care for their son, their marriage, keep up at work, and also care for their daughter whose condition in intensive care remained constantly uncertain. Fei's story is personal and also political, as are most things, and in the last portion of the book she provides context with respect to the insurance industry, companies that self-insure, the machinations of both AOL and Huffington in regard to benefits and employees and the ways in which corporations find and use excuses for diminishing the contribution and therefore the compensation of their employees.
It's a highly readable and personal book. My only concern came at the end, where Fei applies her own situation to considering that of another family in Texas, whose baby was born very prematurely. The Texas family decided prior to the birth that they did not want extraordinary measures taken to keep their premature baby alive. The hospital went to court to overrule them, and now, some years later, that child is profoundly disabled, unable to eat, drink, see, walk, or do anything on her own. Fei's analysis of that situation is sort of "well, that's the risk you take," and I found that incredibly cold and without compassion. No family should be forced into extraordinary measures to save a profoundly premature fetus when the risks of profound disability are so high. We all have the right to make the choices that are best for us. This ending to the book bothered me and felt inconsistent with the spirit of what Fei was otherwise communicating.
It's a highly readable and personal book. My only concern came at the end, where Fei applies her own situation to considering that of another family in Texas, whose baby was born very prematurely. The Texas family decided prior to the birth that they did not want extraordinary measures taken to keep their premature baby alive. The hospital went to court to overrule them, and now, some years later, that child is profoundly disabled, unable to eat, drink, see, walk, or do anything on her own. Fei's analysis of that situation is sort of "well, that's the risk you take," and I found that incredibly cold and without compassion. No family should be forced into extraordinary measures to save a profoundly premature fetus when the risks of profound disability are so high. We all have the right to make the choices that are best for us. This ending to the book bothered me and felt inconsistent with the spirit of what Fei was otherwise communicating.
September 9, 2015
I was so incredibly moved by Deanna Fei's Girl in Glass - often to the point of tears - that I am posting my first ever online book review. Any reading experience that leaves me haunted, challenged, inspired, outraged, amazed and motivated is well worth it. But two things really stood out for me: Ms. Fei's fierce honesty and courage in telling her daughter Mila’s birth story and the connections she made between her story and larger society.
Besides writing a mesmerizing story filled with emotion, passion, intelligence and often brutal, painful honesty, Ms. Fei inspired me to think deeply about topics I never gave much thought to before – premature babies, NICU care, medical privacy and medical ethics, among many other things. Part of the brilliance of Girl in Glass was how by sharing the most deeply personal story a mom could share (and doing so with unflinching honesty and integrity), she set the stage for raising larger issues that impact so many people. Thanks to this book, I found myself undergoing a significant transformation. The wheels are turning, and I know I am not alone. Deep thanks, appreciation and admiration to Ms. Fei for using her voice to advocate for others, and for pushing all of us to think about what we need to do to ensure justice for everyone – from extremely premature newborns and their families to our co-workers and neighbors and strangers alike.
In writing Girl in Glass, Deanna Fei has made an invaluable contribution to the literature of birth stories and mother/child (and family) memoir. For anyone whose pregnancy/birth is similar to hers/Mila’s, or really for anyone facing an unexpected crisis, they now have an example of how to deal with such a situation with honesty, courage, determination and love. At the same time, by sounding a much needed alarm on issues bigger than just her family, she has highlighted the importance of taking action. For this and so much more, she and her family are heroes in my book.
Besides writing a mesmerizing story filled with emotion, passion, intelligence and often brutal, painful honesty, Ms. Fei inspired me to think deeply about topics I never gave much thought to before – premature babies, NICU care, medical privacy and medical ethics, among many other things. Part of the brilliance of Girl in Glass was how by sharing the most deeply personal story a mom could share (and doing so with unflinching honesty and integrity), she set the stage for raising larger issues that impact so many people. Thanks to this book, I found myself undergoing a significant transformation. The wheels are turning, and I know I am not alone. Deep thanks, appreciation and admiration to Ms. Fei for using her voice to advocate for others, and for pushing all of us to think about what we need to do to ensure justice for everyone – from extremely premature newborns and their families to our co-workers and neighbors and strangers alike.
In writing Girl in Glass, Deanna Fei has made an invaluable contribution to the literature of birth stories and mother/child (and family) memoir. For anyone whose pregnancy/birth is similar to hers/Mila’s, or really for anyone facing an unexpected crisis, they now have an example of how to deal with such a situation with honesty, courage, determination and love. At the same time, by sounding a much needed alarm on issues bigger than just her family, she has highlighted the importance of taking action. For this and so much more, she and her family are heroes in my book.
September 8, 2015
I remember reading some articles about Tim Armstrong's statements about "distressed babies" costing companies too much money, so I was intrigued by the idea of this book. This memoir is so brutally honest - it made me feel Deanna Fei's pain and conflict after the premature and "catastrophic" birth of her daughter. For expressing her most deeply felt emotions, the author of this memoir is very brave. I found it to be compulsively readable, and relatable as a mother. Her daughter's struggle to live and Fei's struggle to accept and understand such a life-changing event are the focus of the book. The reader understands her shock when her family is publicly blamed for a large corporation's decision to curtail employee benefits. Discussions of medical privacy shed new light on the subject. It gave me new perspective about the efforts and expense that are incurred to save severely premature infants. "NICUs are often depicted as extravagant departments in a way that other high-cost hospital units, such as orthopedics and oncology, are not. Patients who have spinal cord injuries or need coronary bypass surgery are roughly as expensive as the average NICU patient, but we don't generally demand that such categories of people prove themselves deserving of medical care the way we demand that premature infants justify the costs of their existence."
Most of all, this book is a beautifully written, heart-felt love letter from a mother to a daughter. What a gift Fei has given to her "miracle child."
Most of all, this book is a beautifully written, heart-felt love letter from a mother to a daughter. What a gift Fei has given to her "miracle child."
August 30, 2015
Fei's second child is born at only 25 weeks. She chronicles the medical interventions needed and uncertainty over whether her child will live or die, her feelings of guilt and anxiety wondering why her daughter arrived so early without warning, and the contrast between this delivery by C-section and the birth of her healthy son only 13 months prior.
At the end she briefly covers the evolution of the NICU unit and opinions on the worth of caring for premature infants over time. Medical costs in the U.S. are sky high, and cases like these do effect the insurance premiums of others in our current system. However none of us can predict when we might need care for catastrophic incidents and as Fei says, "A part of me is still deeply troubled by the charge that my daughter and I didn't deserve the care that she received. That, despite the fact that my family faithfully paid our insurance premiums and copayments, we are still freeloaders of a sort."
At the end she briefly covers the evolution of the NICU unit and opinions on the worth of caring for premature infants over time. Medical costs in the U.S. are sky high, and cases like these do effect the insurance premiums of others in our current system. However none of us can predict when we might need care for catastrophic incidents and as Fei says, "A part of me is still deeply troubled by the charge that my daughter and I didn't deserve the care that she received. That, despite the fact that my family faithfully paid our insurance premiums and copayments, we are still freeloaders of a sort."
July 22, 2015
This beautiful book pulled me in and didn't let me go. Deanna Fei's daughter was born at 24 weeks gestation and survived, but the story of how she makes it through is both luminous and heartbreaking. I liked the flashbacks to Fei's past as well, which brought in context to what her family was going through. The last chunk of the book is more academic, covering the rights of families with preemies, insurance coverage, and more cerebral topics, but despite the change in tone, I stayed with it. I'm currently almost 20 weeks pregnant - for some reason, the topic did not trigger any anxiety for me, but it might for other pregnant women, just because of the fear of early delivery.
August 29, 2015
“Girl in Glass” raises a lot of pertinent issues surrounding both premature babies and medical privacy infractions, which I found quite illuminating and relevant considering both are on the rise. Author Deanna Fei also lays out the history of neonatal care and today’s guidelines on which preemies are usually saved; at her daughter’s birth at 25 weeks, only half of the babies are said to survive, and many of those are disabled. Fei’s story packs a wallop for her candor during her daughter’s struggles, and is informative about issues that many of us never imagine, or plan on, could happen to our families.
August 29, 2015
I heard about this book on "All things considered" on NPR in July 2015. Such a fascinating true story about a woman who gave birth to her daughter at 24 weeks into the pregnancy. So much emotion, especially for me to read this while I'm pregnant, too. And the moral issues, around health care, of course I think they should have privacy, not have their family health issues made public. Health insurance has covered some of the bills, but not all. But no money can replace the life of a happy child...thank God she's alive and doing well.
February 26, 2016
I highly recommend this book to not only parents of extremely premature babies but to every concerned about HIPPA and health care policies.
Written in memoir style, baby Fei's story touched me emotionally and inspired me by her instinctual and heroic will to survive despite her "catastrophic " birth and grim prognosis. The baby was born twenty-five weeks into an unremarkable pregnancy and weighed a mere pound and five ounces.
This book is not only the heart touching story of her parents' fierce determination to defend the care--and its cost--given her, but also of moral and ethical dilemmas.
Written in memoir style, baby Fei's story touched me emotionally and inspired me by her instinctual and heroic will to survive despite her "catastrophic " birth and grim prognosis. The baby was born twenty-five weeks into an unremarkable pregnancy and weighed a mere pound and five ounces.
This book is not only the heart touching story of her parents' fierce determination to defend the care--and its cost--given her, but also of moral and ethical dilemmas.
August 13, 2015
I think Deanna Fei writes courageously and honestly. It takes guts to bare your soul and your family to the world like she did. I hope someday Mila gets to read what Mom wrote about her, that might be interesting to speculate what that encounter would be like.
I saw a lot of reviews say the last part of the book was written in a rush, but I didn't get that feeling at all. I thought it was very well thought out and articulately conveyed.
I saw a lot of reviews say the last part of the book was written in a rush, but I didn't get that feeling at all. I thought it was very well thought out and articulately conveyed.
August 11, 2015
An amazing, honestly written memoir. The author does not shy away from describing her feelings when her daughter is born early, and anyone who has delivered a baby early will know her description rings true. But the story doesn't end there. When her husband's company implicates her and another family with causing a change in benefits due to their "distressed babies" and the cost to save them, the author finds herself in the position of having to defend her daughter's life and treatment.
August 25, 2015
This memoir of a family with a very premature baby girl is an all-encompassing look at the emotional, physical, financial, ethical and moral intricacies of the tiniest babies cared for in modern neonatal intensive care units. Deanna Fei deserves kudos for her brutally honest look at the whipsaw of emotions she felt as she dealt with a baby that "wasn't supposed to be here yet." I found the book to be insightful and educational.
November 3, 2015
I liked this book very much. I think my favorite part was part IV, in which the author discusses the public policy issues surrounding medical intervention for super-preemies. It was a really good explanation and also cleared up some of my questions I had always wondered about bout medical insurance, reinsurance, self-funded insurance plans, etc. It is informed by Deanna and her daughter’s story (parts I-III) but I think if you wanted to skip those, you could still get a lot out of part IV.
January 1, 2016
I avoided reading this since I thought it was another mom-oir, but this book bravely and honestly explores not only the author's experience with her micro-preemie daughter but also connects her experience well with larger and vital issues of medical privacy, the ethics of health care, and how we determine the value and worth of human life. There's a good reason it was on many top nonfiction lists of 2015.
December 16, 2015
Deanna Fei has written a gut wrenching raw book about her daughters premature birth at 5,and a half months.From the opening scenes of her racing to the hospital in the back of the cab in early labor.The birth of he daughter the heartache she and her husband Peter suffered not knowing if their daughter would survive&be a healthy child.This is a journey and a miracle you will never forget.
January 10, 2016
I think it is said that reading grows empathy. No doubt that reading Fei's memoir grew empathy in me for the moms and dads I am humbled to know during their NICU journeys. I now know a little more about CPAP and isolettes and breast pumping, just enough to ask a more thoughtful question than I could have before when conversing with a mom after her long day at the hospital.
September 6, 2015
Absolutely extraordinary. Her writing invites a reader in to experience raw emotions, authentic thoughts of the life and love she has for her daughter; the doubts in her mind as she experiences a four-month NICU stay.
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