The Value of a Human Life

Steve Kraske

Deanna Fay had no idea that a baby could be born so prematurely. The baby in question? Her own. Deanna had her baby, Mila, at 25 weeks. Up until that point, it had been a routine, low-risk pregnancy. But Mila weighed in at just one pound and a half. nine ounces. The story of Mila's amazing fight to live is just one part of Deanna Faye's memoir of that time, Girl in Glass. The other part concerns the controversial remarks made by AOL chief executive Tim Armstrong. He was the boss of Deanna Faye's husband, who explained his reasoning behind the cuts that had recently been made to the company's retirement benefits. In part, he said those cuts were made because the health care costs associated with two distressed babies. The blogosphere had a field day with that term in a case that again raises thorny questions about the value of any one life. Deanna Fay is with us here in the studio. She's the author of Girl in Glass, Dispatches from the Edge of Life. She speaks at the library tonight. The book is now out in paperback. And Deanna, what a pleasure to have you here. Welcome.

Deanna Fei

Thank you. Thank you for having me.

Steve Kraske

Also in the studio is Dr. John Lantos. He's an ethicist and pediatrician at Children's Mercy Hospital. John, always good to have you too. Welcome back.

Dr. John Lantos

Good to be here. Thanks, Steve.

Steve Kraske

Well, you know, one pound, nine ounces, Deanna. I'm wondering what you thought the first time you saw your daughter.

Deanna Fei

When I first saw my daughter, I was honestly afraid to even name her because I knew that I could lose her at any moment. And naming

Steve Kraske

her might make your connection even stronger.

Deanna Fei

Exactly. I found it terrifying to even look upon her. Her skin was barely formed. Her ears were barely formed. Everything about her... seemed to me to say that she simply wasn't ready for this world. I was already the mother of a 13-month-old boy who had been born at 40 weeks, and I thought I knew how parenthood goes. So when my daughter was born, it really upended everything that I thought I knew about motherhood, about love, about life itself.

Steve Kraske

So your struggle, at least internally, was let her go or hang on.

Deanna Fei

Right. This terrifying limbo that... parents face when a baby is born so prematurely is something that I had no idea about before my daughter was born. You know, we hear the word preemie and we think that we know what it means, but really it's this terrifying suspension between birth and death. between hope and fear, between nature and science. It's an experience that often seems unspeakable. And for a long time, for me, it was.

Steve Kraske

Dr. John Lantos, when you talk to moms and dads of preemies that little, that young, that one pound, nine ounces in that range, what do you tell them as they struggle in this limbo land that Deanna was just describing?

Dr. John Lantos

Many parents who have this experience have exactly the same feelings. I mean, they're entering a world that they couldn't even imagine. Neonatal intensive care units are extremely strange places, very high-tech, but also very compassionate and humane. I read Deanna's book, which is a marvelous read. Everybody should go out and buy Girl in Glass. But the combination of fear, terror, the unknown... And then at the same time, compassionate professionals doing their best to try to ease the parents into this world and take care of these tiny, fragile babies and figure out whether continuing treatment is the right thing to do or not in each individual case is something that can't be explained.

Steve Kraske

Is there a right answer at moments like that?

Dr. John Lantos

I think there are better answers and worse answers on a case-by-case basis, so that I think... In most cases, both doctors and parents are trying to figure out whether the treatment is going to lead to survival or whether it's just going to prolong dying and cause unnecessary pain and suffering. But with each baby, there are signs that you can look for and there are tests that you can do that tip us one way or the other. It

Steve Kraske

doesn't

Dr. John Lantos

reduce the agony or the struggle, but it... helps guide us with each baby.

Steve Kraske

So Deanna, how did you and your husband, Peter, navigate this netherworld of ethical limbo here?

Deanna Fei

It was day to day, hour by hour, minute by minute. From the first day, the doctor said, she's a fighter. She's a feisty one. I didn't know what to make of it until I reached into the incubator for the first time, and her hand held onto mine. Describe

Steve Kraske

that moment for us, because it's a very powerful moment in the book. Unexpected

Deanna Fei

too, I might

Steve Kraske

add.

Deanna Fei

delivered a child or if I've just lost one and then I reached into the incubator and her tiny fingers closed around my hand from that moment I knew that I had to this would be the greatest challenge of my life and also what it had to be its own reward there's no guarantees with a baby like this you have no idea what the next day, the next week, the next month will hold. But I had to learn that any moment that I'm sitting beside her and watching her breathe and holding her hand, that has to be enough. So in writing this book, it was important for me to acknowledge how much terror and heartbreak and guilt and stress an experience like this can hold, but also how it teaches you to live in the moment, how it can bring you moments of beauty and... incredible joy, and transcendent love. These are all lessons that my daughter taught me and continues to teach me to this day.

Steve Kraske

I want to read just a little passage about that moment you just described. All at once, I know that I can't help but love her because she is mine, because I am her mother. But I don't think I can bear it. She needs a braver mother, a selfless mother, a heroic mother, a mother who could never wish to let her go. Again, the struggle that you are facing. So profound.

Deanna Fei

Thank you. You know, for so long, I suffered this experience in silence and in isolation. It seemed to me that my daughter's birth seemed so wrong somehow that I could never tell the story of how she arrived in the world. It was only when she became the subject of this national firestorm and I felt compelled to defend the basic worth of her life that... I learned from really parents around the world that these types of emotions are pretty much universal following a traumatic birth, the arrival of a medically fragile child. And, you know, it's important to me to raise awareness of this, to show why we need to break down these walls of silence to tell these stories, and for me to help other parents know that they're not alone, that other people have been through this and have come out on the other

Steve Kraske

side. Fast forward a little bit. At what point did you begin to think that, hey – She just might make it after

Deanna Fei

all. Well, we spent three long, dark months in the NICU, the Neonatal Intensive Care Unit. NICU. Right.

Steve Kraske

Maybe an appropriate

Deanna Fei

name for it. And it always seemed like it was one step forward, one step back. Every time you start to think... this is going to be okay, then she would suffer a setback. The same time, every time she suffered a setback, and those setbacks were terrifying moments when her lung collapsed. You know, one night when we got a call from the hospital that she had stopped breathing. And yet every setback was also a chance to fight back harder. And again and again, she did. When she came home, she looked like a normal newborn in a lot of ways, tinier than most. She came home with no special medications, no... no medical equipment. And I... can't even begin to describe how blessed I felt to have this baby in my arms. Can

Steve Kraske

you just describe for us what the neo-intensive care unit is like? Because I have a little personal experience with this myself in the birth of my first son. But John is right. I mean, these are places that you are totally unprepared for unless you've been there before. Wires, gauges, bells, whistles. I mean, yeah. John, describe this place for us.

Dr. John Lantos

People use spaceship analogies. It looks like a very high-tech place and especially, I think, for people who walk in for the first time, one of the most shocking things is how tiny the babies are and how big the equipment is. So you look around and you see machines and you see monitors and you see lights flashing and you see the professionals bustling around and you almost have to search to find the tiny little babies sort of bundled up within the isolettes. The title of the book, Girl in Glass, refers to the fact that they're in these little bubbles surrounded by technology and machines and people and electronics. Adult ICUs are similar in a way, but the patients are much bigger. They have a similar kind of alienating, frightening quality when you first walk in and see a loved one. surrounded by such intense technology. But with the babies, the patient almost disappears.

Steve Kraske

When you would walk in, you just didn't, like, walk in out of the hallway and go over and see Mila. You had to do a few things in preparation. Like what?

Deanna Fei

Well, you have to walk in, you have to put on a sanitized robe, wash your hands, dry them, you know, with every stray drop. And the whole time, at least in my head, I'm thinking, you know, a piece of lint could kill her at the stage of life that she's at. You know, every moment in the NICU was defined for me by profound awe and gratitude for the professionals who were keeping her alive in a very real way. At the same time, I think for mothers especially, there's... Maybe nothing so awful as that feeling of helplessness when all you can do is sit there while other people take care of your child. You

Steve Kraske

can't even pick her

Deanna Fei

up and hold her. I wasn't able to hold her outside of her isolate until seven weeks after her birth. I could only hold her finger, hold her hand. Sometimes I could place a palm on her. tummy or her back and feel her breathe. I couldn't feed her directly. I had to watch that milk go down via a feeding tube and a syringe. And of course, you know, there's the beeping alarms. There's the flashing monitors. All

Steve Kraske

of which you don't really understand what it all means.

Deanna Fei

You don't understand except you know that you're witnessing your child's on the edge of life.

Steve Kraske

I want to fast forward here to the drama that surrounded your family once AOL chief executive Tim Armstrong weighed in here. He owned AOL. That's the parent company of the Huffington Post where your husband worked and where your family got its health coverage. Now, he said famously, I should point out, that he made cuts in retirement benefits one year in part because of the costs associated with two jobs. Distressed babies, quotes around the words distressed babies, your daughter being one of them, Deanna. How did you first come to hear that term, distressed babies, and what in the world went through your mind when you heard it?

Deanna Fei

I was home with Mila when these headlines started to ricochet throughout the media universe, and my first reaction was to think this can't be about me. baby in front of me now she had actually just started taking her first steps that week which you know is a miracle for any parent witnessing their child's first steps but for me as a mother of a child who I truly did not know if she would ever smile or walk or speak until she did that was kind of like a revelation in our household. It was the first moment when I finally began to breathe a little bit easier and feel deep down, you know, this is going to be okay somehow. So you're feeling

Steve Kraske

better and then this

Deanna Fei

storm hits. And then this storm hits. And, you know, my next reaction, to be perfectly honest, was to cower in shame, was to feel like, well, you know, I don't know how to make sense of the larger issues here, far be it from me to understand how a CEO does his accounting or to know how these hospital bills were paid behind the closed doors of corporate boardrooms. And I was also still so steeped in guilt over the birth of my daughter. daughter. Guilt

Steve Kraske

because? I

Deanna Fei

carried this sense that I couldn't even really understand at the time that I must have done something wrong to cause her premature birth. I've since learned that this is extremely common, pretty much universal among mothers of premature babies.

Steve Kraske

You felt guilty even though every sign along the way of your second pregnancy had been spot on, right on the mark. There were no indications of any problems.

Deanna Fei

Right. I mean, just like my first pregnancy, every test result, every screening, you know, everything came back perfect. At one point, in fact, soon before the birth of my daughter, my doctor had said, oh, you know, you're one of the patients we never have to worry about.

Steve Kraske

Yeah, right. Dr. John Lantos, this notion that Deanna was feeling guilty, you heard that before, I imagine.

Dr. John Lantos

Like she says, I think every woman who gives birth to a premature baby goes over every event leading up to the premature birth. and asks, was it something I did? Was it something I didn't do? Could I have avoided this? Was this my fault? I think it's

Dr. John Lantos

generally not anything that the pregnant woman did, but I think it's impossible not to search your behavior, search your soul, and look for some cause to explain it.

Steve Kraske

And, John, when you first heard Tim Armstrong, again, the chief executive officer of AOL, use this term to stress babies, did it hit you immediately that this was going to be a controversy that wasn't going to fade anytime soon?

Dr. John Lantos

That was so wrong on so many levels that it's hard to know where to start. It's

Steve Kraske

called a PR fiasco, I think, yeah.

Dr. John Lantos

One has to do with the cost of premature babies and the fact that while saving an extremely premature baby is very expensive, in the overall scheme of medical care in the United States today, it's not the most expensive. Many other things have comparable costs, adults with cancer, kids with cancer, bone marrow transplants, you name it. I mean, being critically ill and requiring expensive treatment is not unusual. although people single out premature babies as an unusual focus of that. That was one thing that was wrong. The other... Why do

Steve Kraske

you think that is? Why are preemies sort of targeted in this whole idea of cost-benefit analyses here? I

Dr. John Lantos

think premature babies have a special and weird moral status. They always have. It goes... as far back as kind of religious rituals about naming babies, that you don't name them until they're a few days old. Newborns, especially tiny preemies, are kind of not yet fully fledged members of the human community or aren't perceived as that. So they

Steve Kraske

can be regarded

Dr. John Lantos

as something different than you're

Steve Kraske

suggesting. Something

Dr. John Lantos

different and therefore less deserving, perhaps, of the same sort of treatment that we give to other members of our community. Nobody would question... an expensive treatment for a two-year-old with leukemia, for example. I mean, we would just say, of course, you do everything you can to save the life of a

Steve Kraske

two-year-old. You know, Deanna, you found something similar in one section late in your book. You talk about some of the history here of premature births. And even you referenced John F. Kennedy and Jacqueline, who had a premature baby, which really helped raise America's conscience when it comes to this.

Deanna Fei

Yes. You know, I think when we see how high-tech the equipment is in the NICU, we have this idea somehow, or at least I did, that this is a new area, you know, that this is an unprecedented frontier. Premature babies have always been born, and we've always wanted to save them. That's a basic human impulse. What's changed is that now we actually have the technology in many cases to do so. In 1967, JFK and Jacqueline Kennedy gave birth to a premature baby who, by today's standards, was really not that premature at all.

Steve Kraske

Oh,

Deanna Fei

I'm sorry, in 1963. So in the middle of

Steve Kraske

his presidency, toward the end of his presidency, actually. Yes.

Deanna Fei

And they couldn't give him assistance with breathing, which is what he needed. And he died within a couple of days. So this episode really generated this broad interest across American society in investing in the care of premature babies. And it really struck home for me that this is... a measure of our humanity, how we care for the most vulnerable members of our society.

Steve Kraske

Before we take a break here, just give us a sense of... of what all this did wind up costing because there was some back and forth on this question too. Tim Armstrong at the time he made his first statement was talking about million dollar babies and you found out that wasn't exactly accurate.

Deanna Fei

Yes. So just to backtrack a little bit. When I first heard this news all I could think was you know that the most profound trauma in the life of my family had just been exposed for no other reason than this absurd justification for corporate cost cutting. And then when I was able to take a step back and actually dig into the truth of these claims, dig into these numbers, I discovered that it was a huge exaggeration. Some baby's care does cost a million dollars or more. You know, in the context of today's health care system, I'm not sure there's anything extravagant about that. But in my daughter's case, the real cost seems to have been something like a few hundred thousand dollars, which, again, is a lot of money, but it's not a million dollars. And I think what's really disturbing to me is not to vilify this particular CEO, but to understand what his claims are. represent for a lot of vulnerable families in America today who might find themselves targets of other cost-cutting executives. Because the truth is there was no reason to cut retirement benefits. There certainly was no reason to blame a newborn baby's hospital bills for those cuts.

Steve Kraske

And the company was doing extraordinarily well at this time.

Deanna Fei

Right. And we've just kind of come to expect as a society that worker benefits are the zero-sum game. while CEO bonuses are completely untouchable, which was the actual calculus behind it. his claims in this

Steve Kraske

case. A couple things here. In fairness to Tim Armstrong, one thing we can say in fairness is he did apologize publicly for what he said and backtracked in the wake of all this. Let's do this. Let's take a break. When we come back, we'll continue our very good conversation here about the value of any one human life. We're visiting with Deanna Fay, the author of Girl in Glass, Dispatches from the Edge of Life. It's now out in paperback. Also here, Dr. John Lantos, who's an ethicist and a pediatrician at Children's Mercy Hospital. I should point out that Deanna will be speaking tonight at 6.30 at the Kansas City, Missouri Public Library, the Plaza Branch. You can RSVP now to get a seat. Just go to kclibrary.org. This hour, we're talking about a very interesting, provocative story, the story that's outlined in the new book, Girl in Glass, now out in paperback. girl in glass dispatches from the edge of life. It talks about a premature birth, the ramifications of that, the cost of that, the controversial remarks the head of the company that employed the mom's husband made in the wake of that birth and the national outcry that resulted in the wake of it. Our phone number here, 816-235-2888, or you can tweet us at KCUR up to date. You know, Deanna, at one point you decided to go public with your views of all this. How tough of a Was it for you? And what were the considerations that you were weighing at that point?

Deanna Fei

It was an extremely tough call. My husband was obviously an employee of the CEO. We depended on his paychecks and the health insurance that he received through the company. I was and will always be extremely grateful that my daughter's care was covered by our insurance, which was... partly subsidized by AOL. And it was, frankly, terrifying to think of speaking out against a powerful man, a powerful company.

Steve Kraske

So

Deanna Fei

what

Steve Kraske

triggered

Deanna Fei

it? You know, the phrase distressed babies just seemed extremely dehumanizing to me. And even as there was a public outcry about this phrase, there also seemed to me to still be very little public understanding of what it means to have a baby. like mine, and very little understanding of the challenges that she and I had faced. It was very easy for these tweets to be ricocheting across the media universe about, well, I hope these quote-unquote distressed babies are happy. How many quote-unquote distressed babies does AOL pay this guy? It just seemed to me that I needed to tell the full truth of how she arrived. I needed people to understand why she needed the medical care that saved her life. And I needed to come forward as the mother of this child because if I didn't, I might as well have died. forsaken her because it you know it was a moment where I had to say yes and I you know I delivered this baby and I can't be ashamed any longer I'm proud of her this is all that she's overcome and here she is now taking her first steps in front of me

Steve Kraske

how did your husband Peter feel about you going public because again the old job and job security was very much on the line there

Deanna Fei

he was Scared, just like me, but he knew that for the sake of our family, for me to be able to look my daughter in the eye, that I needed to do this, and he was behind me all the way.

Steve Kraske

I might be losing track of the chronology here, Deanna, but you wrote Tim Armstrong a letter, I think, before you went public in terms of writing the – or do I have that backwards?

Deanna Fei

No, I never wrote to him directly. came forward to explain that I was the mother of this baby. And I had already been identified by employees. I mean, within minutes, people knew exactly which family he was talking about when he talked about these babies.

Steve Kraske

John, that raises questions of privacy, HIPAA, all those kinds of acronyms that you connect with something like this. What about that concern in in reference to what Tim Armstrong said about distressed babies. And employees at Deanna's company quickly figured out, you know, who, which family was being spotlighted here.

Dr. John Lantos

Sure. One of the most worrisome things about this whole series of events was the breach of privacy. Most of us get our health insurance through our employers. Most of us assume that our health insurance and our health care is confidential. But to the extent that we're getting it through our employers, our CEOs could look through our health care records. It wasn't clear from the book whether he had identified Deanna and the family by name, but by calling out a particular case, even without naming the name, he immediately drew attention and within minutes people could identify the person. So the fear here that this story rightly should trigger is that somebody's looking through all of our health care records and making decisions about which expenditures are justified, which expenditures are not, and perhaps deciding whether to publicly shame people for having expensive illnesses.

Steve Kraske

It was interesting for me, Deanna, in the book, your husband, Peter, is at the office dealing with all those challenges. And he's in one space mentally. You're in another at home dealing with Mila and your son. And I'm wondering, at one point, he sort of begins to really come to grips with the meaning of this controversy and the impact it's having on your family. Can you take us back to that?

Deanna Fei

Yeah. I think in some ways he was able to give me perspective on the event before I was able to step out of just how much emotion swirled around this for me. Strangely, he actually was forced to be in his professional mode as a journalist, having to oversee coverage of this breaking news story because that was his job at the Huffington Post as this became, you know, the corporate gaffe of the moment. Which also meant that he, as an economics reporter, was able to come home to me when I still had this sense of, you know, I know that this is wrong and yet maybe I don't have a right to complain. You know, maybe it was my fault somehow. You know, Tim Armstrong made a point of blaming the mothers of these babies. And that so precisely echoed the sense of guilt and shame that I still carried that I, you know, didn't have it in myself to fight back at that point. And he said to me... It just doesn't make sense. Either the

Deanna Fei

CEO is lying or the company was reckless because there's no way that a company of AOL's size shouldn't have been able to absorb the hospital bills of two babies, no matter how many weeks they might have needed in the NICU. That was not something that I was able to process until... you know, sort of step by step, you know, for me to come forward and say, you know, no one deserved to be singled out like this, let alone a newborn baby. And after... The piece went out, and after it completely, to my surprise, went viral, I received an outpouring of messages from people across the country who told me that they had also been shamed, blamed, otherwise targeted by employers for their children's medical bills. So that's what also led me to explore this issue of medical privacy that Dr. Lantos so aptly describes. I was... Before this incident, the kind of person who shrugged about Facebook privacy settings and customized Gmail ads and even those disclosure forms at doctor's offices. I never really understood why medical privacy is an issue that ordinary families should be concerned about. But what I came to see is that any violation of our medical privacy... has the potential to expose profound traumas. I mean, the medical crises that we or our children might undergo, these are some of the most traumatic experiences that anyone can undergo. So when these experiences are exposed, and most often they're exposed to blame somebody for the costs of their care.

Deanna Fei

It's an issue of basic civil rights, really, for Americans today. And what I've also come to see is that the laws that are supposed to protect us in the age of big data are increasingly weak and outdated.

Deanna Fei

we need to pay attention to this because this is not a hypothetical fear. I still hear, it's now two years after this AOL incident, I still hear from people who tell me that they were shamed at company meetings. Their employer directly called them a burden for something like having uterine cancer. I hear from fathers who were fired for no apparent reason other than that their babies had just landed in the NICU. I heard from a mother who was terminated the day after she was told that she needed to go on bed rest whether these are legal violations it's sometimes a gray area but i think we can all agree that they're very wrong and they should not happen to john

Steve Kraske

how big is the threat to our privacy as deanna's laying out here how do you view this

Dr. John Lantos

uh as long as um most people get their health insurance through their employers and as long as employers then have to shop around For group health insurance policies, they need to be looking at this, and it's built into the system that they will take into account expensive illnesses. Most, I think, should take it into account in a responsible way and plan ahead and try to ensure that all the employees get covered. But there are obviously cases where, for whatever reason, they choose... actions that are clearly illegal, firing people because of health conditions that were not pre-existing conditions where there was no deception or lying. So it's a huge problem.

Steve Kraske

So bottom line, I guess it goes without saying that any one company, if they have several cases of employees who are suffering from high cost illnesses that require high cost treatment, that drives up... the cost of coverage in the next year or two.

Dr. John Lantos

Sure. Most insurance companies will experience rate premiums. Yeah. So if you have 20 employees and two have very expensive illnesses, it's like having two car wrecks. Your premiums will go up the next year.

Steve Kraske

You know, you just wonder, should there be limits on what an insurance company has to pay out and anything over the limit be paid for by the family? maybe that's a good question to ask our listeners about. 816-235-2888 is our phone number here, or tweet us at KCUR up to date. Deanna, how do you look at that? And how much did your family have to pay out as a result of Mila's difficult arrival?

Deanna Fei

We certainly had to pay what I would consider to be our fair share, something in the thousands of dollars. But I think the larger question here is that Prematurity is a fact of life. If you have a company of 20,000 employees, you can pretty much bet that in any given year someone is going to have a premature baby. These are the kinds of life events that health insurance is designed to cover.

Deanna Fei

No one can pay, I mean, okay, well, let's say very few other than the CEOs in America can afford to pay the hospital bills in full of a baby who needs intensive care for months. This is the kind of event that we all would want to have covered if it happened to us. These are unforeseeable, unpreventable medical crises.

Steve Kraske

You asked this question at one point in the book. What's the point of offering health benefits if you're going to point the finger when employees actually need to use them? which sums it up pretty well.

Deanna Fei

That's true. One thing I found really interesting was a health economist who actually reached out to me because he was so outraged

Steve Kraske

by this

Deanna Fei

incident. A

Steve Kraske

Harvard-educated health

Deanna Fei

economist, by the way. Exactly, who actually helped design the Affordable Care Act. And his point was that Any responsible company is supposed to have an insurance plan that can take into account the possibility that an employee might have a premature baby or a car accident or a diagnosis of cancer. Any medical catastrophe that requires costly medical care. In a lot of cases, companies can choose to... sign up for what's called reinsurance or stop-loss insurance, where a secondary insurance company picks up the cost over anything, say, $50,000 or $100,000 per employee. That, in cases where an employer is not large enough for the pool to be, you know, essentially stable enough in any given year to absorb the cost, that's actually pretty standard for employers to do. So in a case like AOL, if they chose not to sign up for reinsurance. And that was a gamble that they chose to take. And when that gamble doesn't go right, I'm sure there were some years where maybe nobody had a premature baby. And they came

Steve Kraske

out ahead.

Deanna Fei

Exactly. And they came out ahead. And then the years when they didn't come ahead, instead of saying, well, we set aside money for something like this to happen, because that's a responsible policy, we

Deanna Fei

Instead, they blamed the mothers of these babies for circumstances that were outside of our control.

Dr. John Lantos

John, hop in here. One other aspect that I think is important for the listeners to know, too, when you think about the costs of neonatal intensive care and saving tiny premature babies, when economists have studied the cost-effectiveness of such care, it's turned out to be surprisingly cost-effective because... Most of the time it's successful. So Mia is now a healthy three-year-old and is going to live a long and healthy life. So when you amortize the cost of NICU care over a healthy lifetime and compare that to the money that we spend treating 80-year-olds who have a heart attack, it turns out we'd be much better off spending more money in neonatal intensive care units than in most other sorts of acute care.

Deanna Fei

This is where Dr. Lantos' work has really been transformative for me in helping to make sense of the larger socioeconomic issues at stake here. And also, honestly, in helping me process the guilt that I carried over everything to do with my daughter's birth, but including her medical bills. And there were people who

Deanna Fei

reached out. It's hard to say reach out. There were people who contacted me in the wake of the controversy to say, in effect, Shame on you. Shame on you for thinking that your daughter's life is worth this amount of money. And I am not immune to that kind of accusation, to that kind of blame. But I think I have also been profoundly moved by what I've heard from so many parents of premature babies, children of special needs who carry this sense of being viewed as burdens on society. And, you know, when you look at a child like my daughter, you know, so many children like her, and you see the... force of their will to live. You see the possibilities ahead for their future. I'm not sure how you can say that their lives were not worth saving.

Steve Kraske

That's the voice of Deanna Faye. She's the author of Girl in Glass, Dispatches from the Edge of Life, now out in paperback, the story of her daughter, Mila, her fight for survival, the cost of her care, and the controversy that followed it. 816-235-2888 is our phone number here. Deanna speaks tonight at 630 at the Plaza Branch of the Kansas City Public Library You can get a seat by going to kclibrary.org. Jack from Shawnee, you're on UpToDate. Jack, good morning.

Caller (Jack from Shawnee)

Good morning. Thank you for the show. Very interesting show.

Steve Kraske

Good.

Caller (Jack from Shawnee)

Instead of being so dependent upon employers and insurance companies, it seems like this makes the case for single payer or Medicare for all, like Bernie Sanders is pushing. Take the profit out of health care. and be less dependent upon employers. It's Medicare for all. What do you think about that?

Steve Kraske

Dr. John Lantos, what do you think about taking the profit out of health care?

Dr. John Lantos

Taking it away from employers makes a lot of sense. The question is how best to do it. Medicare for all or a single-payer system is one way. Many other countries have found other ways where they use tax dollars to subsidize private insurance companies just the way We subsidize utility companies. So there are many ways to get the burden off the employers, but it has not been the American way.

Steve Kraske

Politically, you've got to think that's a tough sell going forward in the wake of the big fight over the passage of the Affordable Care Act.

Dr. John Lantos

And the Affordable

Steve Kraske

Care Act, to give it credit,

Dr. John Lantos

did put caps on co-pays and made it the case that people couldn't be excluded from insurance for pre-existing conditions. although did not curtail the adjustment of premiums so that employers would have to pay more as a result of having these expensive babies.

Steve Kraske

That's the voice of Dr. John Lantos, an ethicist at Children's Mercy Hospital, 816-235-2888. Here's our phone number here. Macy from Topeka, you're on UpToDate. Macy, good morning to you.

Caller (Macy from Topeka)

Good morning. I had a question. I work for a hospital. And in a hospital setting, we are very, very aware of HIPAA, and we have to sign agreements that we understand HIPAA. Even if it comes down to a point to where two doctors are discussing a patient's diagnoses without even mentioning a name, and that patient's family members in the elevator hearing these two people publicly talk about this person's medical condition, that can add up to a quarter million dollar fine and 10 years in prison. And so what I'm failing to understand is how is it that these employers, without naming names, are sharing medically pertinent information that is nobody's business in that room and not getting held to the same standards that those who work in hospitals are.

Steve Kraske

Dr. Lantos, what

Dr. John Lantos

would be your guess there? It's a great point and a tough question. I'm not a lawyer and certainly not a HIPAA lawyer, so whether... Jack Armstrong's statement to the employees would have been such a HIPAA violation when he didn't name names? I just can't say.

Deanna Fei

Well, I mean, from my conversations with lawyers who specialize in this area, I've been told that it was technically a HIPAA violation because the fact that he made my family identifiable, whether or not he named names, is a violation of HIPAA.

Steve Kraske

Did you decide you opted not to pursue it?

Deanna Fei

I did not pursue it because... I honestly, I had no appetite for seeking retribution.

Steve Kraske

More

Deanna Fei

fight at that point. In a courtroom. And I also knew that there, you know, I could guess that if we were to file a lawsuit, it would drag out. And if it didn't drag out, it would be because they offered my family a settlement. The settlement would probably, would most definitely have required us to never speak about it again. And because of... How this all blew up, I just knew that I could not put a price tag on my daughter's humanity or my silence.

Steve Kraske

Can I ask you, is your husband still employed by AOL?

Deanna Fei

No, he left soon after the controversy subsided.

Steve Kraske

Because of the controversy?

Deanna Fei

It was complicated, but it certainly was not easy to continue working at a place where, you know, your wife has essentially been a whistleblower forever. an employee violation.

Dr. John Lantos

Yeah. John, I'll cut you off. Just a quick point on HIPAA. You can bring a lawsuit for personal injury, but the feds actually pursue HIPAA violations. So you wouldn't necessarily, they could have gone after you.

Deanna Fei

Yes. Yes. So, I mean, not for my sake or, you know, I mean, I consider my family really fortunate in how things have turned out for us. My concern is for all the People who I continue to hear from who are extremely vulnerable to suffering violations of this nature and often can't fight back and can't protect themselves because they're afraid of losing their jobs, because they're afraid of their medical conditions becoming public news and then being considered unemployable to future employers. There was one woman who I wrote about in the book who was – directly fired for being, quote unquote, too expensive after a cancer diagnosis and is now facing homelessness. So, you know, struggles like these are what motivate me to continue to try speaking out and raising awareness on some of these issues. And in the context of employers and HIPAA, it... It does seem like violations like this happen every day, and they're very hard to prove. They're very hard to fight back against. Let

Steve Kraske

me go back to some calls. Nate from Overland Park. Nate, you're on UpToDate. Good morning.

Caller (Nate from Overland Park)

Good morning. Thanks. I guess I would share a positive note here, and I know this is a tough discussion, but I had a premature child, and the way that my employer took care of me, both with benefits, but also with the way they treated me afterwards with, work-life balance issues and everything else is the reason that I stayed as long as I did. It costs thousands of dollars to hire a new employee, certainly not as much as the bill that we saw from the hospital. But I think over time it's worth it because you're going to have more productive employees who know what they're doing and are extremely loyal.

Steve Kraske

Yeah. Nate, thank you very much. I appreciate it. You know, interesting the responses you got, and you got responses all over the board, Deanna. In fact, some of them are almost hard to read, commenting on your daughter's physical appearance and saying, you know, it's not worth it. Here's one response. You know what, Mrs. Fay? Ms. Fay, your daughter's alive and well thanks to the medical care paid for by your insurance, which is largely paid for by AOL. So Armstrong mentioned distressed baby. So what? Much as you may not like to hear it, you and your daughter's harrowing journey have financial ramifications for your husband's employer. An unpleasant reminder of our experience seems like a small price to pay in this instance. Appreciate what you have and the corporation that helped make it possible. There you go. And you reacted to that

Deanna Fei

how? I've said it before and I will say it again. Was grateful, am grateful, will always be grateful that my daughter received the care that she did and that we were not bankrupted by that care because the company did the responsible thing in covering us with the health insurance that they were contractually obligated to provide. I don't think that... I think that what is important to me is to point out this larger culture where we still treat health care as a privilege rather than a basic human right, even when it comes to a newborn baby who can't speak for herself. We've got a

Steve Kraske

phone call here from Bruce in Prairie Village. Bruce, we have just a minute left. Good morning.

Caller (Bruce from Prairie Village)

Yes, I'm a physician in the area, and I've read several times that one-third of all Medicare expenditures are expended in the last two months of the recipient's life. And so this all question is a question of rationing again where society wants to put its money because we don't have enough money to do everything. And whether you want to put your money in doing well child care and taking care of sick babies so they will cost less in the future or spending it so an 80- or 90-year-old can have another month or two, I mean, it's not something we want to think about, but we just don't have enough money.

Steve Kraske

Yeah, you know, and Dr. Lantos, we struggle as a society to deal with these issues. We can hardly bring ourselves to talk about them. It

Dr. John Lantos

goes back to your first question, Stephen, about how we make the tough decisions.

Dr. John Lantos

If your doctors had gotten to the point where they really thought your baby was going to die... they probably would have sat down and had a very different discussion. And doctors have those sorts of discussions with parents and with family members and with patients every day. And they're making decisions to withhold or withdraw life-sustaining treatment every day. So the point is a good one. How to fine-tune treatment so that it only goes to people who will survive is the most difficult thing we try to do.

Steve Kraske

We're going to have to leave our very good conversation there. I want to thank Dr. John Lantos again, an ethicist and pediatrician at Children's Mercy. John, I always appreciate it. Good to be here. Deanna Fay is the author of Girl in Glass, Dispatches from the Edge of Life. It's out in paperback now. She'll be doing a live webinar from Children's Mercy Hospital tomorrow from noon to 1. Go to cmh.edu slash cmbc to register to listen to her live webinar tomorrow.