804: The Retrievals
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Prologue: Prologue
Ira Glass
And so she headed off to make it as its very own podcast, its own show, with her co-workers at Serial Productions and the New York Times. And the show is now finished. It just launched this week. I'm thrilled that we can present the first episode of their show here on our show, and that is what we're going to do today. It's great, and without further delay, let's just get into it. Here's Susan.
Act One: Act One
Susan Burton
The women are seeking fertility treatment for a variety of reasons. They've had a couple of miscarriages, and they're pushing 40. They don't have fallopian tubes, or they need sperm. One woman has a diagnosis that's like a metaphor from feminist sci-fi, a uterus with a single horn like a unicorn.
All of them line up at the fertility clinic at Yale University.
A couple of the women choose this clinic because they work at Yale, and that's what the Yale health plan covers. Others go to Yale on the recommendation of their doctors. But in Connecticut, you don't even really need the recommendation. Yale Medicine-- it's a blue chip medical brand.
Allison
You know, Yale is just a huge name, and you just think anything that has anything to do with Yale is going to be the best of the best.
Julia
It's really not close to our house. It's not where I would have gone. But we figured, another doctor from another hospital said this is the best you can get. And of course, you want that.
Susan Burton
To some of the women, the clinic seems to live up to its billing. They like their doctors, feel cared for by them. That man is an angel, one of the women tells me. He is by far the best doctor I've ever had. Others are not happy at the clinic from the start. It's things like feeling like a number or issues with communication.
There's a lot to communicate. You don't know how hard fertility treatment is until you get into it. And once you start it in one place, it can be difficult to go somewhere else. So they talk themselves into staying. That's the first thing they go against their instincts and talk themselves into.
The women drive to the clinic before work in the morning for blood draws and then wait for the afternoon email from their nurse team. You really have to trust your nurse team, one of the women tells me. At this point, she did. The nurse team gives instructions, and the women give themselves shots. These shots contain hormones to stimulate the body to produce eggs. A side effect is emotional volatility.
The wind is making me cry, one of the women says. But the thing is, you have to stay calm. Don't get stressed. It's so stressful trying not to get stressed. One woman uses a fertility meditation app called Expectful. She does her guided meditation on the beach. The app plays the sound of waves while the real waves heave in the background. It's absurd, but so much of this is absurd, including the money. There's all kinds of stuff that's not covered, no matter what insurance you have.
Meanwhile, your ovaries enlarge, and you get so bloated that your abdomen feels like bricks. And then finally, you get to the day you've been waiting for-- the day of the first egg retrieval, which is what it sounds like. The eggs are removed from the body and then fertilized or frozen, depending on what you're doing. How many eggs am I going to get? That is the big question. The more eggs you get, the better your chance of a healthy embryo, a viable pregnancy, a child.
The day of the retrieval, the women arrive at the clinic. They check in on different mornings in different months and calendar years. None of them are here on the same day, but they will come out of the day with the same story. Laura arrives for her retrieval on a weekday morning in January 2020. She checks in and changes into a gown.
Two months ago, Laura was diagnosed with breast cancer. A double mastectomy followed, then an infection and additional surgeries. As soon as she freezes her eggs, she's going to start cancer treatment. It's a lot. Laura is trying to put all of that to the side and just focus on the procedure ahead.
Laura
I was excited, like trying to stay positive. And I was just like, having been through so much just the month prior, I was like, this is going to be easy because I had been through so many surgeries and procedures. I was just like, I know what this is like. I know what it's like to be under anesthesia or something and be given medication so you don't feel things.
Susan Burton
The egg retrieval is a surgical procedure. A long needle is inserted into the vagina, then pierced through the vaginal wall and up into the ovary. Laura has been told in advance what drugs she will be getting during the procedure.
Laura
Two drugs, fentanyl, and another one, midazolam or -zalam. And I believe that one is to induce sleepiness.
Susan Burton
Together, these two drugs offer what's often called moderate sedation. Basically, the fentanyl takes away pain, and the midazolam relaxes you. Some people get drowsy with this combination. Others remain alert. The use of fentanyl surprises some of the women. One of them, a public defender, has seen a lot of clients messed up by fentanyl, and for a second, she's worried. Another woman, Katie, a neuroscientist at Yale, feels a spark of interest.
Katie
And in fact, just being someone who studies addiction and studies some opioid use disorder, and as a curious person, I remember the morning of, thinking like, OK, this will be interesting. I've never tried fentanyl before. And so I expected to go in and have twilight anesthesia, not full anesthesia, but not feel anything.
Susan Burton
The women complete the last steps before the procedure, get an IV, go over some papers. If their partners came back with them, now their partners say goodbye. And then it's time. The women tell what happens next.
Laura
I walked myself into the procedure room because you get rolled out afterwards. But you don't have any medication in you. You're just kind of hooked up to the IV pole. And I walked into there, and you get on the chair or table, whatever they call it. And that's from there. They said, you're not going to feel anything, and they explained everything that was going to happen.
Lynn
They started the procedure, and I was just sort of taken by surprise, not expecting the excruciating pain, and just letting them know that I don't think the pain medication is doing anything. It really feels like you're stabbing the needle.
Angela
I felt everything. It's literally your most intimate parts of your body. They're using these long needles. And there's also a screen. So I can watch what they're doing, and I couldn't. I had to try and look away because literally each needle pierce, you feel.
Lynn
As we were moving along, it was my blood pressure started going up. I was sweating profusely and telling them, I was just in too much pain, that they had to stop. At that point, I remember them giving me more of the pain medication and me saying, it's not making a difference, a nurse coming over and putting a wet towel on my head, and another nurse holding my hand, and them comforting me and saying, you're going to be OK.
Angela
The nurse who-- she was at the top of my body, kind of at my shoulders, wiping the tears away and helping me kind of hold my breath to keep myself still, so that the doctors didn't slip with the needle, and just telling me that I was going to be OK, that I was going to get through it.
And up until that moment, I'm so excited, like, oh I have 24 follicles. This is great. I'm going to have a great egg retrieval. And then you're like, oh, my god, I wish there was only one. Like, everything was counting on that retrieval. And that's how it feels, like the whole weight of your world. My partner and I, she's counting on me to be able to get through this and to have this successful retrieval. And all I'm feeling is, oh, my god, I need it to stop. Is this worth it?
Lynn
And your feet are in the stirrups. And you're supposed to be laying on the table, but I remember tightening up and just trying to relax my body so that they could do what they needed to do because I was so tense that my bottom was almost off of the table.
Laura
I remember thrusting my hips up, actually thrusting my hips up, saying, I feel everything. And nobody believed me. And it's just like, I don't know. But what are you going to do? I wanted the procedure done. I just let it happen. And I was like, I'm awake, so.
Katie
I was stone-cold sober and awake. And I remember, the egg retrieval, they kind of do them one by one or a couple at a time, my impression. And so you have moments in between pain to say, like, what the fuck is going on?
Laura
I do remember, I think I swore. I was using curse words because it was just so painful.
Lynn
I don't know if I can do this any longer.
Laura
You just have to get through it. It's going to be over before you know it.
Melissa
OK, this is going to be over eventually.
Lynn
You can do this. You can do this.
Angela
You just want this moment to be over.
Lynn
Get through it. Get through it.
Katie
I remember yelling or kind of making like, ahh, and then really looking in confusion at my nurse, the attending nurse and her saying, I'm giving you the most I can legally give you.
Melissa
She said that that's the maximum that she's allowed to give me so she couldn't give me anything else.
Lynn
I'm almost certain that at one point, they said that they had given me all of the pain medication that they could give me.
Angela
At one point, they did say that I had maxed out. I couldn't have any more fentanyl or Versed. And I was like, how is this possible?
Laura
How is that even-- like, how am I feeling this?
Angela
How do people go through this?
Laura
I can feel that. I could feel the-- I don't even know how to describe that. You can just feel them inside of there. As a woman, we've all been through things with those kind of doctors and stuff, but this is just a pain, it's like hard to even explain what it felt like.
Susan Burton
It's-- this is hard to do, but could you describe the pain that you felt?
Katie
Oh, gosh. It felt like someone was ripping something from the inside of your body.
Susan Burton
Yeah, which is literally what they were doing.
Katie
That's what it felt like. Yeah.
Susan Burton
Yeah, yeah. Ugh, I'm sorry.
Katie
But I remember almost immediately thinking or almost daydreaming in that moment that the attending nurse had one tube going from my IV into my arm and another tube going from my IV into her pocket. Like, it occurred to me almost immediately that the nurse was stealing the fentanyl.
And I remember telling my friends after the procedure, my friends who were aware of what I was going through, but who are also colleagues at Yale in addiction research. I remember telling them like the nurse is stealing the fentanyl because it seems so obvious to me. I mean, fentanyl is the most diverted drug in medical settings. It's like a now major driver of the opioid crisis. And it was just really easy to imagine that someone with access to poorly controlled fentanyl would be abusing it.
Susan Burton
That's so fascinating that that's the image that raised itself up for you because it is so evocative.
Because it is so evocative and also because it was true. A nurse at the clinic was stealing fentanyl. Not Katie's nurse, not the tube in the pocket, but a nurse at the clinic was stealing fentanyl and replacing it with saline. She did so undetected for months, which meant patients weren't getting fentanyl in their IVs. They were getting saltwater instead.
Reporter 1
Drug addicted former nurse is sentenced for a crime that caused unbearable pain to dozens of women. The nurse stole drugs and then replaced them with saline solutions.
Reporter 2
Connecticut nurse admits that she swapped out anesthesia drugs for saltwater, causing excruciating pain to women during infertility treatments.
Reporter 3
It happened at a top rated center affiliated with--
Reporter 4
Tonight, a horrible story about the extremes a fertility nurse struggling with drug addiction took to get her fix.
Susan Burton
A federal investigation determined that as many as 200 patients may have been victims of this substitution over five months in 2020. Lawyers for some of the patients believe the real number is higher, and this went on for longer. I've talked to a dozen patients who believe they were victims of this. 11 of them are plaintiffs in a lawsuit against Yale, and their lawyers were present when we spoke.
When I started doing these interviews, I was struck by the echoes in these women's stories. To me, it sounded like a chorus of women saying, something is wrong here, again and again. The patients wondered how the clinic could have failed to detect this. And the conversations I was having made me wonder that, too.
And then I began talking to other people, staffers who'd been there, and I learned about what went on behind the scenes. The staffers I spoke to were horrified by what the patients had experienced. They were grappling with their own questions about how this had happened, about what had gone amiss. The patients didn't know why they were in pain. Their doctors didn't know either.
And in the absence of information about the true cause of the pain, people came up with stories to explain it. The patients constructed stories about why they felt pain. Staffers at the clinic came up with theories, too. Eventually, the nurse would tell her own story, which would launch a whole new set of stories, the ones her friends and family would come up with, the one that would get argued in court, the one Yale would tell. And all of these stories revealed something about women's pain-- how it's tolerated, interpreted, accounted for, or minimized.
[MUSIC PLAYING]
In fertility treatment, you evaluate the outcomes by whether you wind up with a baby. That's the metric by which success is measured. It all went well if you leave with a live birth. The outcomes here are a lot more complicated for everyone. From Serial Productions and the New York Times, I'm Susan Burton, and this is "The Retrievals." This is Episode 1, "The Patients."
[MUSIC PLAYING]
When the retrieval is over, the women are wheeled out to the recovery room. And one of the first things that happens is that they try to come up with an explanation for their pain.
Laura
They put you into the recovery room, and that's where you meet with whoever you were with. And I just remember, that's when I had my phone back, and I was texting my sister-in-law because she was my confidant for all of this, having been through that. And she was just replying, like, oh, my god, how could you-- what do you mean, you felt everything? And I was just like explaining to her. I'm like, I don't know what's wrong. And one of the texts I said, I said, I think I'm immune to fentanyl because I was like, I don't think it works on me.
Susan Burton
I'm not sensitive to fentanyl was a common theory.
Lynn
And I remember when the procedure was done, my family sort of-- we have a family text that's ongoing. And I just remember texting them that it's hard to believe that we have a fentanyl epidemic where people are addicted because it did nothing for me.
Susan Burton
Not all of the women were alert during their procedures. Some were more deeply sedated. They were so out of it during the retrieval that they don't really remember it, or only kind of. The pain hits when they come to.
Leah
It was bad instantly, and it shouldn't really be bad instantly. You shouldn't wake up and be in horrific, like nightmarish pain. But I woke up, and I was. I mean, it felt like someone had been inside me and gutted me. Yeah, it was like a gutted feeling. It was like someone had been inside me, scraped me hollow. It was burning.
Susan Burton
In a way, it is more confusing for the wake-up-later patients. They're not matching each stab of pain to the needle on the screen. It hurts a lot, but it's less explicable, and because of that, scarier.
Allison
Your mind just goes to the worst possible places. I'm thinking, am I bleeding, you know? Am I bleeding internally? Normally, pain is a sign-- is protective, right? It tells you something's wrong.
Susan Burton
There's a lot of uncertainty in the recovery room-- an elevated blood pressure, a nurse running around to get ginger ale, a doctor coming by to say, there are fewer eggs than we expected. Are you sure you only want us to fertilize half of them? It's all just very overwhelming. And on top of it, some of the women feel like they're being rushed out of the clinic. Julia is one of them.
Julia
I remember vomiting. They were giving me some fluids. I was very uncomfortable. There was no way I could walk. They put me in a wheelchair and wheeled me out. And I just had this feeling, like, this is not right.
Susan Burton
Julia is 31 years old and already a college professor. This morning, when her husband drove to the clinic, she'd been frantic. There was work on a bridge near their house, and they got stuck. There's only a short window to retrieve the eggs before you ovulate them, and Julia was worried she would miss it. When she arrived at the clinic, she felt a huge relief, like we made it, both we made it on time and we made it to this day. Now, she's feeling something she never expected. At home, she goes upstairs and gets into bed.
Julia
I fell asleep for a little while, and then I woke up and I was nervous. We had a babysitter here watching my daughter. And I just-- you wake up, you're like, oh, my god, who's with my kid? I need to-- and I walked a few steps to try and go down the stairs, and I realized I really had gone too far from the bed.
By this point, the pain was excruciating, I would say. And I turned to go back to lay down in my bed again. And I mean, I don't remember this, but I blacked out or passed out. And I woke up on the floor, and I kind of busted my lip open.
Susan Burton
Julia calls the clinic, and they tell her that she should go to the ER. She's in so much pain that she can't bend enough to get into a car. An ambulance is called, and when Julia gets to the hospital, they check her out. The retrieval is a safe procedure, but things can go wrong. Your ovary can strangulate. A major artery can get punctured. But none of the obvious things are wrong, and nobody can explain what is. Back home over the weekend, Julia calls the on-call doctor at the clinic multiple times.
Julia
By Sunday, I sort of got the sense I was annoying him.
Susan Burton
Julia keeps waiting for a call from her official doctor. By Tuesday, she still hasn't heard from him.
Julia
It was impossible for me to understand how he hadn't called me by this point. But I called his office on Tuesday, basically saying, I need to talk to you.
I wrote down what he said, and I've kept this note since that time. He said he was not alarmed, but perplexed and surprised at my experience. Those words, I guess, ring pretty hollow now, right, knowing that there was a pattern of many women who had extreme, inexplicable pain after the egg retrieval.
Susan Burton
What did you make of that language in the moment, "perplexed and surprised"?
Julia
It was-- I mean, I guess, I felt crazy. I mean, by this point, I'm asking myself, am I being difficult? I mean, you just question your sense of self, your ability to assess your situation rationally, which is very disconcerting when that happens, because at least at the end of the day, you have that, right?
You start thinking about your whole life, right? Like, I'm a pretty high energy person. I take care of a toddler. I have a PhD. I have a job. I run marathons in my free time. You have all these parts of your life that give you this sense of who you are. And then I just felt like they were treating me like I was nuts for still being in pain and just having what I would call a difficult time.
I just left the office, I mean, crying. I just felt like nobody, nobody cares. That's the way I would describe how I felt in the days after. Like, nobody gives a crap that this was so hard for me.
Susan Burton
In the days after the retrieval, other patients live out versions of the same story. They also call the clinic. They ask, is this normal? They say, the Tylenol isn't helping. At home, they're laid up on the couch. They can't pick up their toddler. They wonder if they really should have scheduled themselves for a shift the next day.
[MUSIC PLAYING]
Not all staffers at the clinic are dismissive, but even when they respond with concern, there aren't any real answers. Some of these conversations take place days after the procedure, like at follow-ups to talk about next steps.
Lynn
You didn't really talk to the office until day five or day six, which is when I found out that none of the eggs had survived. None were healthy enough to go to testing. And we had to talk about moving forward. And that's when I really expressed my sort of shock that the procedure was as painful as it was and talked about if there were other pain management protocols that could be considered at that point.
And I was told that that was the best pain medication that was available. And my doctor prescribed me an anxiety medication to take before the next procedure. And I remember saying to my husband, I think it's strange because I'm not anxious about a medical procedure. It was the pain. It was severe pain, not anxiety about going into it.
Melissa
The next time that I saw my doctor, he asked me how the procedure went, and I said, it was really, really painful. And he was kind of like a little bit concerned, but then he just didn't say anything after that, so I was like, OK, I guess. And this was my first time doing it, so I didn't know any better. So I was like, oh, OK, I guess it's supposed to be painful.
Susan Burton
Other women are talking about what happened with family and friends.
Angela
So at that point, I had talked to a couple of family members who had done retrievals, and I felt even worse. There's nothing like feeling shame from another female and unintentional, too. Like, that just seems weird because I was wheeled back there and joked with the staff and then fell asleep and woke up and was fine.
And that seemed to be the general consensus between procedures at different clinics, that, oh, yeah, I was kind of alert, but I didn't feel anything. It was really no big deal. Like, the shots ahead of time were way worse than the actual procedure. And I started shutting down after hearing those stories that this was on me. Something wasn't right with my tolerance and my ability to handle this.
Susan Burton
The women are already settling on their stories about what happened to them. I'm immune to fentanyl. It's my fault. It's supposed to be painful. The clinic tells patients that they may experience mild discomfort, but now some of them have recalibrated their expectations, including Lynn, who will have eight retrievals at the clinic. All of them will cause her excruciating pain.
Lynn
Again, you hear about IVF and how tough of a process it is mentally and physically. And I just thought, this is what I have to do. This is what I have to do. And sort of just thought, this is what women go through.
Susan Burton
Yale declined to offer information about how reports of pain were addressed at the clinic or to answer any other questions.
Ira Glass
Susan Burton. Coming up, how a person can go from thinking that a nurse is stealing the fentanyl, which, of course, was right, to thinking, oh, maybe there's some other explanation. That's in a minute, from Chicago Public Radio, when our program continues.
Act Two: Act Two
Ira Glass
It's This American Life. I'm Ira Glass. Today, on our show, we're bringing you the first episode of our producer Susan Burton's brand new podcast, The Retrievals. Susan picks up the story where she left off.
Susan Burton
Of the 12 patients I spoke to, most are white. The one Black woman in the group was often the only Black woman in the clinic waiting room. Everyone in the group identified as a woman. While a couple of them were pursuing pregnancy for the first time as they neared 40, most did not fit that stereotype.
Most were married to men, one to a woman. That patient would provide the eggs, and her wife would carry the pregnancy. Her wife presents as more stereotypically masculine, doesn't wear women's clothing. And at first, family members were like, are you sure you want to do it this way? Yes, they were sure.
One was doing this on her own at 41 after the end of a long relationship. Another left her boyfriend partway through the process and then fell in love with the new guy at the office. One was born in Iran and came to the US as a refugee. Another grew up in Jamaica.
One had what she described as a horrible childhood. She essentially had to raise herself. Another longed to have a second baby because she was so close to all of her siblings. One had type 1 diabetes and was used to everyone always attributing all medical issues to, oh, it's your diabetes.
All of them worked. A special ed teacher, an accountant at a maritime firm, and a lecturer at Yale in the Department of American Studies. Her name is Leah.
Her scholarship encompasses a variety of subjects-- exile and migration-- she's the patient who came to the US as a refugee from Iran-- and gender. From the beginning of her treatment, Leah located her experience within a context of assumptions about women patients, that they're unreliable narrators of their own symptoms, that they are anxious, exaggerating.
Leah
But I remember the first time I went in there to get ready for the ultrasound, there was blood on the floor from a previous person's ultrasound. And I have to tell you, it was as ominous as signs fucking come. And I just remember Navid was with me, I think. Was Navid with me? Oh, no, he couldn't go inside. He was waiting in the car. My husband was waiting in the car.
I was just shaking. I was like, this isn't good. I mean, it was like, you walk in, and I was like, there's blood? You guys left blood over? What is going on here?
Susan Burton
Did you say anything? Did you say that?
Leah
But here's the thing, and this is where it begins, is, you are treated like a hysterical woman from the second you walk in there. So you already know. And as a person who-- I study this stuff. I teach this stuff. And you're there, and you're like, oh, this is actually what's happening right now.
Here comes like Freud's patient, the hysterical woman who's childless, and angry, and hormonal, and terrified, and bitchy, and mean. And that's how we're going to treat her.
Susan Burton
Hysteria comes from the Greek word for "uterus." Ancient explanations for it involve an empty uterus. A woman was hysterical because her uterus was not full. Unanchored, the uterus roved through the body, which was what made women sick and crazy. To fix hysteria, you really needed to fill that uterus up.
Leah
So with the blood, I remember being like, there's blood on the floor. You know? I was really upset. And they're like, OK, OK. I mean, it turned right back on me. And I remember one of the nurses was like, OK, well, you can calm down. I was told to calm down.
And then when they're doing the ultrasounds, of course, someone's doing a transvaginal ultrasound. So there's literally like this stick that's inside of you, and they're moving it around. And if you cringe, oh, OK, it'll just be like another-- it's just another second. It's just, OK, just be patient. So you're constantly over emphasizing or over dramatizing what's happening. It's not that big of a deal.
Susan Burton
Leah felt like her doctor wasn't listening to her. She also didn't trust her assigned nurse. Then came Leah's first retrieval. She felt her pain wasn't taken seriously by anyone. She says they all blew her off. Leah wasn't happy with her treatment, but she decided to continue.
Leah
Here I was. I saw it. I felt it. I was alarmed by it. But I kept going because I wanted to have a baby.
Susan Burton
Leah asked for a new doctor. He oversaw her next cycle, and soon she went in for another retrieval.
Leah
Right after you're in that room, the anesthesiologist came up to me, and she said, you know what? You were waking up. You were waking up. We ought to give you some more meds. You were waking up.
So again, you, your body, you were nervous. You were agitated. You burdened us. Your kind of uncontrollable body put us in a position where we actually had to give you more drugs. You were waking up, so we had to give you more fentanyl. And I was like, oh.
But again, to them, to them, I'm this woman who's already on edge. I already left the doctor because I didn't like the doctor. So the other physicians and the other nurses all know this about me. I'm a kind of already unruly, perhaps entitled, overly kind of needy woman who's just really angry that she doesn't have a baby.
Susan Burton
There's a balance you have to strike as a woman patient. You have to complain just the right amount to be taken seriously, but not so much that you seem shrill. Still, your pain is more likely to be underestimated than men's. Black women are more likely to have their pain ignored, no matter what they do. All of this, we know from the literature and also from life. In my life, I've been the kind of patient where if I've ever spoken up, I felt like I need to be obsequious later to protect myself. That is what I felt I needed to perform.
Leah knew she'd need to perform a whole range of things in order to get help-- stern, docile, smart, stupid, agreeable. And now, on a gurney in the recovery room, Leah became an observer. She would remember what was happening. She would write about this one day. She tuned into the language and to the emphasis that, to her, seemed so interesting and fucked up and to the syntax that seemed to place the blame on her body.
But at the same time, Leah had also internalized the narrative that her body was to blame. Her body was inadequate, deficient. That was why she was here. Her body had had miscarriages. Her body didn't make enough eggs. Her body couldn't cooperate long enough to get through a critical procedure.
Leah
Oh, god, my body. Like, here it goes again. Not only can I not have a baby, I also can't even just lay still with the right amount of fentanyl.
Susan Burton
Leah wasn't the only woman who had an area of expertise that was directly applicable here in a way that is kind of uncanny. For example, there are multiple patients who work in health care, including one who's designed systems for the safe storage of medications. There's a nurse anesthetist. She thought the anesthesia was the one part of fertility treatment she wouldn't have to worry about. And of course, there's the addiction researcher, Katie, who had the prophetic fantasy.
Susan Burton
What's unique about you is that not only did you know something was wrong, you knew exactly what was wrong.
Katie
I did.
Susan Burton
Yet still, you constructed this other narrative to explain it.
Katie
Yes.
Susan Burton
Like other patients, Katie had expertise that gave her knowledge, but she and others pushed that knowledge aside. They decided not to know what they knew in order to keep going. I wanted Katie to lay out the path to that cognitive dissonance. I wanted her to explain exactly how she got from one story to the other.
Katie
I mean, as I've told you, I came out of that procedure, and I remember immediately texting my friends, who are also colleagues in addiction research at Yale, like, the nurse is stealing the fentanyl. It just seemed so obvious. But then you sort come out of this-- I remember just coming out of the shock and recovering from the procedure, and things just go on. No one is addressing the fact that I was sober during the procedure.
And I remember violently shaking in recovery from the shock. I don't know that that's related to having the procedure with or without fentanyl, but that's how my body responded. And my nurse was there. And I remember her saying something like, I think it was so painful because we got so many eggs. And so it was just sort of this positive, kind of false narrative about what had happened.
And so then I think I coped by coming up with an alternate explanation, which was that I do remember waking up during having my wisdom teeth being pulled when I was a kid to the nurse saying, shit, shit, and then giving me more drugs, putting me back under. So the other explanation for me was that maybe I'm not sensitive to certain opiates.
And I remember also that kind of became my narrative with-- my friends and colleagues kind of remember me sort of switching to that narrative and saying, like, well, maybe you're not sensitive to fentanyl. So I started to kind of just tell myself a story about my pain, just try to understand. It's a way of just understanding my experience and thinking, yeah, maybe this is what happened.
[MUSIC PLAYING]
Susan Burton
The story becomes a way not only to explain pain, but to cope with it, a way to not only make sense of the pain, but to manage it, to tamp it down, get through it. In this way, the story becomes the medicine that the patients weren't given.
[MUSIC PLAYING]
The women gear up for second, third retrievals. They changed their diets. They cut chemicals out of their home. They read the books the nurses recommend, or they get ready for embryo transfers. They make reservations at a hotel in town so that they won't have to drive home over a bumpy road. Despite these efforts, some of the women miscarry.
One woman wakes up about 10 days after her embryo transfer with some spotting. Don't think anything of that yet, a nurse reassures her. But the pregnancy test comes back negative. When do you think you might want to get started again? Her doctor asks her at a virtual follow-up appointment. I'm not ready, the patient says.
She closes the telehealth, and that's the last time she talked to the doctor. She never goes back to that clinic. She stops fertility treatment and doesn't know when or if she will ever resume it. She never wants to go through an egg retrieval again.
Fertility treatment doesn't always result in a baby. It's not just giving yourself shots that's hard. It's the cycle of hope and loss. It just clobbers you. And the longer you stay in it, the more the drugs mess with your head. It's called the Clomid crazies for a reason, one of the women tells me.
And the money, always the money. If your insurance covers this, it probably only covers a few cycles. There's so much pressure on each one. Once you have to pay out of pocket, you're talking maybe 15k for one cycle, and that's the low end. Some of the women are keeping their treatments secret. One of them can't even tell her own mother. It's hard. It's hard to begin with, even without this extra layer that's been added on to this now, the pain and the fear of more of it.
Laura
The first time, I went in clueless, thinking, you're not going to feel a thing. So I think the second time, I had a lot more anxiety.
Susan Burton
Laura doesn't get as many eggs as she hoped for the first time around. It's urgent that she start cancer treatment, and the doctors accelerate her cycle. Her second retrieval is scheduled for barely more than two weeks after her first. That morning, Laura's mother drives her to the clinic and sits in the waiting room, while Laura goes back for the procedure.
Laura
And I was shocked. I was shocked again that it was the same situation. I'm thrusting my hips and telling these-- wide awake, speaking to them. And I was just like, I feel everything you're doing. And that was when I remember actually saying to them, I could drive myself home right now. I'm that alert.
Susan Burton
In the recovery room, Laura gets her phone back and just like last time, texts her sister-in-law. She sees her mom. She tells them both how much pain she's in.
Laura
So my sister-in-law right away was like, oh, my god, I cannot believe you felt that again. But my mom, she just felt-- it's hard because she had seen me go through so much as it was with the cancer, any mother who has to live watching their daughter go through that.
And then for me to tell her, this was supposed to be a special moment because we're preserving my fertility. And-- I'm sorry. [CRYING] And for her to see that, it hurts her to see me in pain, you know. And I was just like, well, thank god. I think this was the last time I had to do that. So.
Susan Burton
What did the two of you do the rest of that day? Did she drive you home?
Laura
Yeah, she drove me home, and she stayed with me because she had already been staying with me a lot during the day after my surgeries because at that point, I still wasn't allowed to lift more than 5 pounds because I was still recovering from the other surgeries.
So, yeah, she was with me and made me lunch and comforted me. And just, we were like, OK, so now we just go back to waiting and hoping we get a good number. And I just moved on from it because I faced many more surgeries that year as well. So I kind of had to just switch back into that survival mode. Like, OK, well, now we just battle the next thing, so.
Susan Burton
Ugh. In the other surgeries you had, like cancer related surgeries, what were your experiences of pain?
Laura
It's actually interesting that you bring that up because when I did have my double mastectomy, I was hospitalized. I think I was in for a day or two days. And strangely enough, the night nurse forgot to give me morphine. So I actually was awake and in pain the entire night. And I have a gluten allergy, so they couldn't feed me anything because the kitchen was closed. So I spent the entire night vomiting because they were trying to give me like Percocets or something.
Susan Burton
Ugh.
Laura
And so I know what pain feels like. Whatever. And the next morning, the doctor goes, I don't understand why she didn't give it to you. It was on the order. And I had a really young nurse. Whatever. This is completely unrelated to that, but I know what pain feels like. I've been through it.
And then when I was hospitalized at Christmas, that's funny that you bring that up because my sister-in-law actually had pointed out. She goes, do you remember when you kept telling me you were immune to fentanyl? She goes, when I did a search on my phone-- she's really savvy. You can type in fentanyl in text messages, and it'll bring up every conversation.
She goes, I actually found one from when you were hospitalized at Christmas saying that you were on fentanyl. And I guess she had sent me a picture of her Christmas tree, and I had made a comment like, oh, my god, did your house burn down? And she was just like-- and she was like, what are you talking about? And I said, I don't know. The nurse just gave me fentanyl. And so she goes, look, Laura, so it does work on you.
Susan Burton
Oh, wow.
Laura
And this was a month prior. And that didn't even dawn on me. Like, oh, my god. But when it came time for the other thing, I was just like, oh, it must not work on me because I just felt like nobody had heard what I was saying, so it just didn't exist. It was in my head. So yeah. So I don't know. Was I foolish because I didn't dispute it more? Maybe not. I don't know. But I believe them. You trust them.
[MUSIC PLAYING]
Susan Burton
Months pass. Some of the women get pregnant. Others are still trying. Some of them are still showing up at that clinic for blood draws when they open their mailboxes in December 2020.
Julia
Christmas was on a Friday of 2020, and the mail arrived on Thursday. It was Christmas Eve. And I was busy. And I just thought, I'm not going to go get the mail today. And I waited until Monday the 28th. And it was a nice day. I went outside, I got the mail. And I got this letter.
Angela
So I got this letter in the mail. It's nothing fancy. It's Yale envelope. I'm assuming it's a bill. The bills never stopped coming with IVF.
Leah
You get so much-- when you work at Yale, also, you just get Yale emblazoned mail. And so you're like, oh, OK, whatever. It was like this thin thing, and I was like, oh, they changed locations or something. It's like, this is not important.
Angela
And instead of just setting it aside, I happened to open it. And I was furious.
Katie
And it says, Dear Kathleen Garrison, I'm writing to you in my role as director of Yale Reproductive Endocrinology and Infertility to let you know that we have learned of an event that may have involved your care.
Julia
That they've become aware that the nurse was switching out the fentanyl with the saline.
Katie
As a result, some patients may have received saline instead of the intended narcotic medication during their procedures. While there's no reason to believe that this event has had any negative effect on your health or the outcome of the care that you received, we believe that you should be informed.
Angela
They make this stupid comment in the letter that there was no harm done from this happening. And I don't know if Holl was home or I called her. And I was like, bullshit. No harm done?
Lynn
Don't send me a letter and tell me that we're confident no one's outcomes were affected by this. I know my outcomes were affected by this. I know what I experienced and went through.
Angela
But Yale wasn't going to help me. They didn't think there was harm. They didn't think it was a problem that it was the most-- honestly, I think it was one of the most disrespectful ways they probably could have notified any of us that it had happened. That, oh, we had this little breach, and you're fine. No biggie. Go about your day.
Lynn
Again, no one reached out to talk with us or to see what we experienced as patients. My only communication about it was through the letter. And that's still to this day.
Susan Burton
And yet, in addition to fury, there's also vindication. When they learn the news, however they learn it, the women text their twin sister or run inside to their husband or weep in their kitchen.
Laura
It was mind blowing. I immediately called my mother. I immediately called my sister-in-law. And I'm like, oh. Like, I don't know. Something had just hit. Like, it all makes sense now.
Lynn
And it was like, OK, it all makes sense. It was almost a relief, a relief to know I'm not crazy. There's nothing wrong with my body. I don't have something blocking opioids or where my body is wrong and doesn't react to medicine.
Laura
And but it also shows how much they ignored my pleas for help and saying-- like, nobody believed me. And so, in a sense, it was like relief, just knowing that what I felt was real.
Susan Burton
But there's more. The letter continues.
Katie
The law enforcement investigation and our own review have found no reason to believe that you were exposed to an infection due to this event. Even so, we can appreciate that you may want further reassurance. And if you wish, we will arrange for you to be tested for a group of bloodborne infections at no charge.
Julia
And I was like, what the fuck?
[MUSIC PLAYING]
Those words, not alarmed, but perplexed and surprised, came back to me, right? And you just feel like so completely let down by this institution that's supposed to make you feel safe and, I mean, keep you safe, right? An institution that's supposed to keep you safe, right? That was gone.
Susan Burton
But maybe the most remarkable thing about the letter is the way it addresses pain. It seems to be saying, you did not feel what you felt.
Katie
I also want to assure you that the fertility center routinely uses a combination of pain medications during procedures. We closely monitor patients for signs of discomfort during every procedure and adjust medications or add medications as needed. In this way, we can be confident that our patients stay comfortable, even if one medication is not working. Well, I don't believe that accurately describes my experience. [LAUGHS] And then it goes on to say if you have any questions or want a blood test, here's who you can call.
Susan Burton
The women put the letter on the counter in shock. For months, they'd been constructing their own stories about what happened to them. Now they have Yale's story, which is that this is barely a story at all. The questions the patients have been asking all along have a new focus.
Lynn
As soon as I received that letter, it's like, how does this happen? And how does it happen at Yale, a hospital system with such a great reputation? And how did it happen for so long? So many things had to go wrong for this to happen as long as it did.
Angela
How does an entire facility let this happen? Who trained them? Who thought that this was OK? I get sent home with-- I get packages in the mail with sharp needle containers and strict instructions and alcohol swabs and this crazy protocol that I'm expected to do at home.
They make you double check things. Are there puncture marks? And I'm like, did I really spend more time following directions at home for hormone shots? Like, where were they?
Katie
I think my immediate reaction was, how could this happen at Yale? Why wasn't there a better system in place to prevent it or detect it when it was happening and respond? Why wasn't our pain listened to?
Susan Burton
The women wonder about the system that failed them, but there's something very intimate and human that they are wondering about, too.
Lynn
We were notified that it was a nurse. We didn't have the name of the nurse in that original letter. And so it's sort of racing through your mind, like, well, which nurse? Because you build such a strong relationship with these people. And you see them so often. And you trust them and build a relationship.
And so you're thinking like, well, which nurse could this have been? And then you're showing up, and OK, who's not here anymore? Who's gone? And just trying to figure out who it was.
Susan Burton
The patients know what happened. They're about to find out who did it. That's next.
Ira Glass
Susan Burton. As Susan said in the show, Yale declined to answer any of her questions about what happened in this case or about what they've done to address the issues that it raises. But they did send her a statement that they've sent to other journalists. It states, quote, "Yale deeply regrets the distress suffered by some of its patients." It says that Yale alerted law enforcement about the, quote, "diverted pain medication." And it says that Yale Fertility Center, quote, "also reviewed its procedures and made changes to further oversight of pain control and controlled substances."
You can get other episodes of The Retrievals wherever you get your podcasts. If you're a New York Times subscriber and you haven't tried their audio app yet, you really should check it out. You can find The Retrievals on there. Later episodes of the show cover the criminal case and the judge's decision, which is fascinating, really fascinating and very telling in its own way. The way this plays out feels very meaningful.
And of course, like Susan said, there's way more about the nurse who took the fentanyl, who, the patients learn, had been a fertility patient herself. So presumably, she understood the procedure that all of them went through and understood the stress and the feelings that anybody has during it and how they might feel getting it without anesthesia.
["CAN'T BE TOO CAREFUL" BY JENNAH BELL]
The Retrievals is produced by Susan Burton and Laura Starecheski. It's edited by Laura Starecheski with Julie Snyder. Additional editing from Miki Meek, Katie Mingle, and me. Fact-checkers, Ben Phelan and Caitlin Love. Original score composed by Carla Pallone. Music supervision, sound design, and mixing by Phoebe Wang. Special thanks to Lisa Schuman, Calvin Hocker, Katie Fuchs, Kiley Silver, Dr. Marcelle Cedars, Dr. Maggie Smith, and Sam Dolnick.
Bim Adewunmi, Mike Comite, Alaa Mostafa, Stowe Nelson, and Matt Tierney put together this episode of our show. Our website, thisamericanlife.org. This American Life is delivered to public radio stations by PRX, the Public Radio Exchange. Thanks, as always, to our program's confounder, Mr Torey Malatia. I'm Ira Glass. Back next week with more stories of This American Life.
["CAN'T BE TOO CAREFUL" BY JENNAH BELL]