Transcript for Introducing: The Retrievals

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 philopian 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 wind 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.

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 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. The 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 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 in large 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 treatment. It's a lot. Laura is trying to put all of that to the side and just focus on the procedure ahead.

The agriculture evil is a surgical procedure. A long needle is inserted into the vagina, then pierce through the vaginal wall and up into the ovary. Laura has been told in advance what drugs she will be getting during the procedure.

Together, these two drugs offer what's often called moderate sedation. Basically, the fentanyl takes away pain, and the medazzalam 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.

The women complete the last steps before the procedure. Getting Ivy go over some papers. If their partners came back with them, now their partners say goodbye. And then it is time. The women tell what happens next.

They started the procedure. And, you know, I was just sort of taken by surprise, not expecting the excruciating pain. And just letting them know that, you know, I don't think the pain medication is doing anything. You know, I can really feel like you're stabbing the needle.

You feel. As we were moving along, it was my blood pressure started going up. I was sweating profusely and telling them, you know, 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, you know, it's not making a difference. I, you know, a nurse coming over and putting a wet towel on my head and another nurse holding my hand and then comforting me and saying, you know, you're going to be okay.

And you know, you hit your feet or in the stir-ups and you know, you should just 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 at like my bottom was almost off of the table.

You know, I don't know if I can do this any longer. You know, you just have to get through it.

You can do this. You can do this one this moment over. Get through it. That's through it.

I'm almost certain that at one point they said that they'd given me all of the paint medication that they could give me.

This is hard to do, but could you describe the pain that you felt?

That's when it felt like. Yeah, yeah, I'm sorry.

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.

A federal investigation determined that as many as 200 patients may have been victims of this substitution over 5 months in 2020. Lawyers for some of the patients believe the real number is higher and is went on for longer. I've talked to a dozen patients who believe they were victims of this. 11 of them are plaintiffs and a lawsuit against Yale and their lawyers are 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 patient's constructed stories about why they felt pain. Staffers at the clinic came up with theories too. Eventually the nurse would tell her own story about the pain, 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. 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 one, The Patience.

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.

I'm not sensitive to fentanyl as a common theory.

And I remember when their procedure was done, you know, my family sort of, you know, we have a family text that's ongoing. And I just remember texting them that, you know, it's hard to believe that we have a fentanyl epidemic where people are addicted because it did nothing for me.

Not all of the women were alert during their procedures. somewhere 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.

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.

There's a lot of uncertainty in the recovery room. and 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 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 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 keeps waiting for a call from her official doctor. By Tuesday, she still hasn't heard from him.

What did you make of that language, like in the moment, perplexed and surprised?

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. 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 it follow-ups to talk about next steps.

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, you know, if there were other pain management protocols that could be considered at that point. 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, You know, I think it's strange because I'm not anxious about a medical procedure. You know, it was the pain. It was severe pain, not anxiety about going into it.

Other women are talking about what happened with family and friends so at that point I had talked to

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.

You know, again, here about IVF and how tough of a process it is mentally and physically. And, you know, I, 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.

Yield declined to offer information about how reports of pain were addressed at the clinic or to answer any other questions. Episode 1 of the retrievals continues after the break. 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 a more stereotypically masculine, doesn't wear women's clothing. And the 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 part way through the process and then fell in love with the new guy at the office. One was born and 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 long to have a second baby because she was so close to all of her siblings. One had-type one 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 Leia. 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 gendered. From the beginning of her treatment, lay a located her experience with an context of assumptions about women patients, that they are unreliable narrators of their own symptoms, that they are anxious, exaggerating.

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. Unencored. 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.

Leia felt like her doctor wasn't listening to her. She also didn't trust her assigned nurse. Then Kim 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.

Leia asked for a new doctor. He oversaw her neck cycle, and soon she went in for another retrieval.

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 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. Stern, 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 and to the emphasis that to her seem 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.

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 occupy 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. For example, there are multiple patients who work in healthcare. 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 nearer to explain it, yes. 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.

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. The 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 miscarried. 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 to virtual fall of appointment. I'm 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 angritrival 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 clobberes 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 treatment 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 onto this now. The pain and the fear of more of it.

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 doctor's accelerator 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.

In the recovery room, Laura gets her phone back. And just like last time, text her sister-in-law. Then she sees her mom. She tells them both how much pain she's in.

What did the two of you do, like the rest of that day, did she drive you home?

In the other surgeries, you had cancer-related surgeries. Like, what were your experiences of pain like?

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.

Don't send me a letter and tell me that we're confident no ones. 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.

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.

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.

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. I don't have something like blocking opioids or, you know, where, you know, my body is wrong and doesn't react to medicine.

But there's more.

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.

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 yield story, which is that this is barely a story at all. The questions, the patients have been asking all along have a new focus.

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.

The women wonder about the system that failed them. But there's something very intimate and human that they're 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 racing through your mind, like, well, witch 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, witch nurse could disadvantage, 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?

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

The retrievals is produced by me and Laura Starcheski. Laura edited the series with editing and producing help from Julie Snyder, additional editing by Mickey Meek, Katie Mingle, and Ira Glass. Research and fact checking by Ben Falen and Caitlin Love. Music supervision, sound design and mixing by Phoebe Wang, with production help from Michelle Navarro. Original music by Kala Polo and music mixing by Toma Poli, Inday Chubu is a supervising producer for serial productions. At the New York Times, our standards editor is Susan Westling, legal review by Dana Green, our direction from Pablo Delcon, producing help from Geoffrey Miranda, Kelly Doe, Renon Borelli, Desiree Ebuqua, and Anisha Money. Sam Dolnick is the assistant managing editor. Special thanks to Dr. Marcel Ceders, Calvin Hawker, Lisa Schumann, Kylie Silver, and Dr. Maggie Smith. The retrievals is a production of serial productions and the New York Times.