S01 Episode 1: The Patients

26:47It 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. Like, something wasn't right with my tolerance and my ability to handle this.

27:14The 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. You know, again, you hear about IVF and how tough of a process it is, mentally and physically. And, you know, 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.

28:10Yale declined to offer information about how reports of pain were addressed at the clinic or to answer any other questions. Episode one of The Retrievals continues after the break.

28:31This is Sarah Koenig, host of The Serial Podcast. If you're already hooked on this show, then maybe I don't need to say anything else here except if you want to hear the rest of it, subscribe to The New York Times. The end. But for those of you who have questions, chiefly, why? Why do I have to pay for this? I'm glad you asked. If you've listened to serial shows, you know our stories are inventive and expertly reported. Nobody makes them like we make them. But to make them like we do, it's pretty expensive. You need producers, reporters, editors, sound engineers, fact checkers, not to mention the software, the computers, the travel costs, everything.

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29:47So please, subscribe to The New York Times. You can do it through Apple Podcasts, Spotify, or wherever you get your podcasts. 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.

30:26And 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 U.S. 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.

31:07All 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 U.S. 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 are unreliable narrators of their own symptoms, that they are anxious, exaggerating. 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.

31:52And I have to tell you, it was as ominous as signs fucking come. And I just remember me and Navid was with me, I think. Was Navid with me? Or I subsequently... 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? Did you say anything? Like, did you say that? 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.

32:36And like as a, you know, like a person who, like 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. 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.

33:28So with the blood, I remember being like, there's blood on the floor. I was really upset. and they're like, okay, okay. I mean, it's, you know, it turned right back on me. And I remember one of the nurses was like, okay, well, you can calm down. You know, I was told to calm down. And I mean, 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, okay, it'll just be like another, it's just another second. It's just, okay, just be patient. So you're constantly over-emphasizing or over-dramatizing what's happening.

34:08It's not that big of a deal. Leia felt like her doctor wasn't listening to her. She also didn't trust her assigned nurse. Then came Leia's first retrieval. She felt her pain wasn't taken seriously by anyone. She says they all blew her off. Leia wasn't happy with her treatment. But she decided to continue. 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. Leia asked for a new doctor. He oversaw her next cycle, and soon she went in for another retrieval. Right after you're in that room, the anesthesiologist came up to me, and she said, you know what?

34:51You were waking up. You were waking up. We had to give you some more meds. You know, 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 you 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 like on edge i already left a doctor because i didn't like the doctor so the 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.

35:53There'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. Leia knew she'd need to perform a whole range of things in order to get help.

36:33Stern, docile, smart, stupid, agreeable. And now, on a gurney in the recovery room, Leia became an observer. She would remember what was happening. She would write about this one day. She tuned into the language, into the emphasis that to her seemed so interesting and fucked up, into the syntax that seemed to place the blame on her body. But at the same time, Leia 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.

37:14Oh God, my body. Like, here it goes again. Not only can I not, like, have a baby, I also can't even, like, just lay still with the right amount of fentanyl. In this moment, and throughout her treatment, Leia was simultaneously the writer saying, I can name what's happening here. And the patient saying, how could I have let this happen? Other women occupied their own versions of this position. Their professional identities offered them one kind of story about these events. Their identities as patients directed them to another. Several of them had an area of expertise that was directly applicable here, in a way that is kind of uncanny.

38:02For 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. What's unique about you is that not only did you know something was wrong, you knew exactly what was wrong. I did. Yet still, you constructed like this other narrative to explain it. Yes. Like other patients, Katie had expertise that gave her knowledge.

38:44But 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. I mean, you know, as I've told you, like, I came out of that procedure, And I immediately, I remember immediately texting my friends who are also colleagues in addiction research at Yale, like the nurse is stealing the fentanyl. It seemed, it just seemed so obvious. But then, you know, then you sort of come out of the, I remember just coming out of the shock and recovering from the procedure and things just go on.

39:24You know, I, no one is addressing the fact that I was sober during the procedure. and I remember violently shaking in recovery from like 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's just sort of this like positive kind of false narrative about what had happened. And so then, you know, I think I coped by coming up with an alternate explanation, which was that I do remember waking up during my having my wisdom teeth being pulled when I was a kid to the nurse saying, shit, shit.

40:14And then, you know, giving me more drugs, putting me back under. So, you know, the other explanation for me was that maybe I'm not sensitive to certain opiates. You know, and I remember also that kind of became my narrative with, you know, 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, you know, it's a way of just understanding my experience and thinking, yeah, maybe this is what happened.

40:53The 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.

41:18The women gear up for second, third retrievals. They change 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.

41:58I am not ready, the patient says. She closes the telehealth, and that's the last time she talks 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.

42:28Fertility 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$15 ,000 for one cycle. And that's the low end. Some of the women are keeping their treatment secret. One of them can't even tell her own mother.

43:11It'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. 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. 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.

43:51And I was shocked. I was shocked again that it was the same situation. I'm thrusting my hips and telling these people, like, why do we speak to them? And I was just like, I feel everything you're doing. And that was when I did, I remember actually saying to them, I could drive myself home right now, I'm that alert. In the recovery room, Laura gets her phone back and just like last time, texts her sister-in-law. Then she sees her mom. She tells them both how much pain she's in. So my sister-in-law right away was like, oh my God, I cannot believe you felt that again. But my mom, you know, she just felt, it's hard because, you know, she had seen me go through so much as it was with the cancer.

44:30You know, any mother who has been living watching their daughter go through that. And then for me to tell her, you know, this was supposed to be a special moment because we're preserving my fertility. And I'm sorry. And for her to, like, see that, it hurts her. to see me in pain, you know. You know, and I was just like, well, thank God. I think this was the last time I had to do that, you know. Yeah. So what did the two of you do, like, the rest of that day? Did she drive you home? Yeah, she drove me home, and she stayed with me because she had already been staying with me a lot, you know, during the day, you know, after my surgeries because I couldn't even.

45:16And at that point, I still wasn't allowed to lift more than five pounds because I was still recovering from the other surgeries. So, yeah, she was with me and, you know, made me lunch and comforted me. And just, you know, we were like, okay, so now we just go back to waiting and, you know, hoping we get a good number. And, you know, I just moved on from it because I faced many more surgeries that year as well. So, you know, I kind of had to just switch back into, you know, survival mode. Like, okay, now we just battle the next thing. In the other surgeries you had, like cancer-related surgeries, like what were your experiences of pain like?

46:01It'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 nurse, the night nurse, forgot to give me morphine. So I actually was awakened 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 Percocets or something. 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.

46:37It was in the order. And I had a really young nurse, whatever. This is completely unrelated to that, but, you know, 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, I guess you can, she's really savvy, you can type in, like, 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.

47:14And 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. Oh, wow. And this was a month prior. And that didn't even dawn on me. Like, oh, my God. Yeah. But when it came time for the other thing, I was just like, oh, it must not work on me. Because, you know, I just felt like nobody had heard what I was saying, so it just didn't exist. It was in my head, you know.

47:51So yeah, so I don't know. Was I foolish? Because I didn't, like, dispute it more? Maybe not. I don't know. But, like, I just, I believe them. You trust them.

48:04Months 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. 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 just not, I'm not going to go get the mail today. and I waited until Monday, the 28th. And, you know, it was a nice day. I went outside, I got the mail and, you know, I got this letter. So I got this letter in the mail. It's nothing fancy. It's a Yale envelope. I'm assuming it's a bill.

48:56Bills never stop coming with IVF. You get so much when you work at Yale. Also, you just get like Yale emblazoned mail. And so you're like, oh, OK, whatever. It was like this thin thing. And I was like, oh, they, you know, changed locations or something. It's like, this is not important. And instead of just setting it aside, I happened to open it. And I was furious. And it says, dear Kathleen Garrison, I'm writing you. 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. You know, that they've become aware that the nurse was switching out the fentanyl with the saline.

49:46A few weeks ago, we learned that on multiple occasions, a Yale Fertility Center nurse replaced fentanyl, a routinely used narcotic medication, with a normal salt solution, saline, in some medication vials. 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. They make this stupid comment in the letter that there was no harm done from this happening. and I don't know if Hall was home or I called her and I was like, bullshit, no harm done.

50:37Don'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. But Yale wasn't going to help me. They didn't think there was harm. They didn't think it was a problem. You know, 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, you know, oh, we had this little breach and you're fine. No biggie. Go about your day. Again, no one reached out to talk with us or to see what we experienced as patients.

51:18my only communication about it was through the letter. And that's still to this day. 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. 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. And it was like, okay, it all makes sense. It was almost a relief, a relief to know like, you know, I'm not crazy. There's nothing wrong with my body.

52:01I don't have something like blocking opioids or, you know, where, you know, my body is wrong and doesn't react to medicine. And, but it also shows how much they ignored my pleas for help and, like, saying, like, nobody believed me. And so, in a sense, it was like relief, you know, just knowing that what I felt was real. But there's more. The letter continues. 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 blood-borne infections at no charge.

52:52And I was like, what the fuck?

53:00You know, those words, not alarm, 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. 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. 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.

53:50In 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. And then it goes on to say if you have any questions or want a blood test, you know, here's who you can call. The women put the letter on the counter in shock. For months, they've 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. You know, as soon as I received that letter, it's like, how does this happen, you know?

54:30And how does it happen at Yale? You know, a hospital system with such a great reputation. And how did it happen for so long? So many things had to go wrong, you know, for this to happen as long as it did. How does an entire facility let this happen? Who trained them? Who thought that this was okay? I get sent home with, you know, 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, you know, are there puncture marks? And I'm like, did I really spend more time following directions at home for hormone shots?

55:23Like, where were they? I think my immediate reaction was, you know, how could this happen at Yale? Like, why wasn't there a better system in place to prevent it or detect it when it was happening and respond, you know, why wasn't our pain listened to? The women wonder about the system that failed them. But there's something very intimate and human that they are wondering about too. 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, you know, 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, you know, build a relationship.

56:09And so you're thinking like, well, which nurse could this have been? And then you're showing up, you know, and okay, who's not here anymore? Who's gone? And just trying to figure out who it was.

56:26The patients know what happened They're about to find out who did it That's next

57:11The Retrievals is produced by me and Laura Starcheski. Laura edited the series with editing and producing help from Julie Snyder. Additional editing by Miki Meek, Katie Mingle, and Ira Glass. Research and fact-checking by Ben Phelan and Caitlin Love. Music supervision, sound design, and mixing by Phoebe Wang, with production help from Michelle Navarro. Original music by Kala Pallone, and music mixing by Tomah Polly. Inde Chubu is a supervising producer for Serial Productions. At the New York Times, our standards editor is Susan Wessling. Legal review by Dana Green. Art direction from Pablo Delcon Producing help from Jeffrey Miranda, Kelly Doe, Renan Borelli, Desiree Ebequa, and Anisha Money Sam Dolnik is the assistant managing editor Special thanks to Dr.

58:02Marcel Cedars, Calvin Hawker, Lisa Schumann, Kylie Silver, and Dr. Maggie Smith The Retrievals is a production of Serial Productions and The New York Times

58:19Thank you.