S01 Episode 5: The Outcomes

0:28The women get pregnant. early. And after Isha delivers, she goes back to her OB for her own follow-up. After I delivered, I went in for my six-week postpartum visit to meet with my doctor. And it somehow came up in conversation that I was part of this suit that was going on. And she looked at me and she said, well, what's the big deal? I mean, you ended up pregnant. and she's not the first provider that said that to me. I'm actually in the process of switching psychiatrists because I had a similar experience with her recently where she kind of said, you know, I really don't get what the big deal is.

1:13You were successful. You got pregnant. What's the problem? Wow. Wow. I mean, yeah. I mean, like just what a thing to say as if the only thing that matters is that single outcome and not the entire process. I mean, yeah. Outcomes of fertility treatment are typically measured by the numbers. The CDC collects data. You can go online and look up a clinic and find out what percentage of egg retrievals result in live births. But the outcomes here can't be expressed by existing options on a drop-down menu. some of these outcomes are not concrete. And just like the initial experience of pain, some of the outcomes are questioned.

2:05Really, what are their damages? One fertility doctor, someone not from Yale, said to me about the patients in the lawsuit. What are the harms done? What are the redressable harms? One of the patient's own lawyers told me that when his firm got the first call from a patient, he went home, told his wife the story, then said, but nothing really happened to the woman, so it's not a case. His wife enlightened him. Like Isha, Leia also had a weird interaction with an OB about her experience at the fertility clinic. And I was like, you know, yeah, you know, I mean, I had this horrible experience at REI, you know, the nurse who was stealing the fentanyl.

2:49And I remember that one of the older doctors, she said to me, well, they took care of that. I said, they did? Did they? Again, this is why, you know, at least for me, like, you start talking about it, and someone tells you really politely, in a very kind of polite way, could you please shut up? Could you kindly shut up? Like, this is making me uncomfortable. Please be quiet now. You know, the same thing, you know, like... The same thing. In a way, it was a repetition. First, the women's pain was dismissed. And now the repercussions were trivialized, too. It's an act of erasure to be told that the only part of a story that matters is the end.

3:34They want pictures of the baby. You know, follow up. Let us know they're happy for you when you get pregnant. But the institution itself doesn't seem to care beyond that, beyond the results and the bottom line. I have a child, so what? I wasn't harmed. I have an embryo still frozen, so I wasn't harmed. That's good enough. It's not good enough. What are the lasting effects of this experience for the patients? And what are the outcomes for Yale? And for Donna? From Serial Productions and The New York Times, I'm Susan Burton, and this is The Retrievals. This is Episode 5, The Outcomes.

4:37Back at the beginning of all this, Yale told patients, There is no reason to believe this event has had any negative effect on your health or the outcome of the care that you received. Yale seemed to be saying, your measurable outcomes were not affected by this. Some patients wondered how that could be true. I can't say for certainty that we didn't get all of the eggs that could have been retrieved that day. But my assumption would be, when you have a patient on the table screaming that it's painful and we need to stop, that there could have been a much better outcome to that retrieval. A few doctors told me anecdotally about leaving eggs behind when a patient is in pain.

5:27But there's very little research on having retrievals without anesthesia and what the outcomes of that might be. It's just not a standard category of study. What happens if we do a painful procedure without giving the patient pain meds? Allison wound up with a lot fewer eggs than she expected You know, I was just so upset that we didn't have a better outcome Allison is a nurse, actually a nurse anesthetist She gives fentanyl on a daily basis I can't imagine withholding it from somebody, she said Allison was skeptical of Yale's assertion that nobody's outcomes could have been affected Allison and her husband came to the clinic because they wanted to test embryos for muscular dystrophy to rule out the possibility of passing the gene along Though Allison was in her early 30s and had no infertility issues in fact she had one child already her retrieval resulted in just three viable eggs and then just one embryo Her doctor told her he was surprised that he would have expected a better outcome Allison would have too but Donna was her main nurse and one thing she wondered was if Donna's drug use had a domino effect Allison had been so alarmed by what she described as the organized chaos of the Yale Clinic that she'd recorded everything that went wrong for her there in a list the entries included wrong meds prescribed lab results never reported conflicting instructions for a critical shot called the trigger shot.

7:10Allison had charted all of the mistakes she observed in her treatment. And when she found out about Donna, she wondered if Donna had been charting mistakes too, as in introducing them. Like, when I would go in for my ultrasound, she would be documenting the follicle size while the doctor is doing my ultrasound. So what if she wrote down the wrong thing? How is someone under the influence of drugs supposed to be able to record things accurately? Like, is this why I didn't have the outcome that everyone thought I was going to have? Donna had many responsibilities for many patients' complicated treatments.

7:49I don't feel like if you're under the influence, you can possibly do all that accurately for so many patients. I just don't see that being possible. Allison got lucky with that one embryo. She came out of this with a baby. But she lost something in the process too. Trust. Culminating in the night of her son's birth. So when I had my son over the summer, we were in the hospital. And they did blood work on my newborn son. So they took my son's blood, my newborn son, and they told me that his blood type was B positive. and when they gave me this information I said that can't be I'm O negative and my husband's O positive I can't have a baby with a type B blood so you have to redraw it I said that must be a mistake like the lab must have made a mistake so then they redraw my son's blood and it comes back as B positive and I immediately my mind immediately went to the clinic messed up and they gave me the wrong embryo and this is not my baby.

8:59And it sounds crazy to even say that, but that's immediately where my head went. So now with a baby who is not even 24 hours old, my husband laying on the hospital couch next to me, it's the middle of the night and I'm having an argument with the nurse saying, this can't be right. Redraw my son's blood. So now I have my husband thinking that the embryo that we implanted isn't his or it's not mine. And that's not a rational way of thinking. But that's immediately where our mind went because we just didn't trust this clinic at all. And I thought, oh my God, this woman who I was supposed to trust, I mean, what did she do?

9:44Did she mix up the vials? Did she label the wrong thing? Like, whose baby is this? Like, it can't be. finally after a couple hours I went into my husband's chart and looked at his blood results and and realized that he was b positive and not all positive um which the story sounds like so crazy to me to even say it out loud um but that's just the type I mean that's that's the impact it had on us right like we don't we didn't trust them enough enough to even think that the baby that we had was ours and um your mind shouldn't go there you know your mind you shouldn't immediately think that is what happened um and we still talk about it because it's it's just crazy to even think yeah I mean first of all it doesn't sound like a crazy like this story it doesn't sound crazy to me at all.

10:44And it's like so powerful because it's like, you know, it's the night your baby is born, you know, that you shouldn't, you shouldn't have to like be asking yourself the question, is this baby mine? That should just be a night. I mean, well, it's not always like a night of like pure joy. It's like often, or, you know, it's a hard, like it's a hard few hours. No, but that's the memory that I have associated with that, with that night. I mean, it's really kind of scarred me. Everything that I went through, I just don't trust, I don't trust anybody anymore. You think that your doctors and nurses have your best interest at heart, and it's really hard to regain trust in a medical community when somebody has betrayed you like that.

11:27And I feel like that speaks volumes coming from someone who works in the medical field myself.

11:36The negative, a negative downstream effect is just a deep mistrust of the medical setting where I work, by the way. But, but in, you know, more generally, I mean, I, I, I was always surprised because my twin sister was like not super comfortable in hospitals. And I always kind of felt like, oh, I'm, you know, I work in a hospital. I'm, I'm extremely comfortable here going into the IVF process. Like it just wasn't as stressful for me because I felt really comfortable. And that has really been, you know, taken away. To trust people with something as priceless as your child or whatever it is you're doing to bring a child into this world and to lose that trust.

12:19It's not something you ever get over. When you lose that trust in health care and medical practice, someone who never really had white coat syndrome now does. And I felt really distrustful about the other providers that I would be seeing at Yale and when it came to them touching my body or coming near me. I don't know. I feel like it's hard for me to trust doing a medical procedure again, you know, in a way. Like, for the most part, I do, but it's definitely made it more challenging. Like, for instance, I had a C-section in May for my baby, and I just felt really a little bit nervous, you know, like about like, OK, am I going to feel this pain this time, you know?

13:12And, you know, he was talking to me about like, you know, this is these are the medications I'm going to give you. And he's like, you know, and you'll most likely be asleep. But, you know, there's a chance that you could be awake. And then I was like, what? And so I started crying and I just basically told him, like, you know, I was I was part of that situation. And and he was like so caring and understanding. He's like, I will make sure that you're not awake for anything. I will be on top of it. And I will, you know, make sure that you're given everything so that you don't wake up or know what's happening.

13:41And I was kind of surprised when they told me that I didn't feel anything. But of course, I told the doctors and the anesthesiologist that I had gone through this. And I was like, I just want to let you know because it makes me a little nervous, you know.

13:58The anesthesiologist came up to me and it was this young guy and said to me, okay, here's your options. and was talking about, you know, a epidural and, you know, if we had to do anesthesia and this, that. And the minute he said anesthesia, I mean, I was calm through the entire thing, but the minute he said anesthesia, I looked at my husband in pure panic and started crying. So it really had an effect on me. It still has an effect on me whenever I come across things when it comes to Yale. Unfortunately, they're one of the biggest hospitals here. I think the biggest hospital system here. And even when it comes to my kids, I have the option between Yale and one other place.

14:42And whenever Yale becomes the option, it sends chills through me.

14:53I had to move on, like, after this. I, in large part because of what happened with Donna, we chose to go to a new clinic. Julia is the patient who was in so much pain after her retrieval that she passed out and went to the ER. She left the Yale Clinic, but not what happened to her there. That continued to reverberate. It's the initial experience. It's my daughter asking for months if I'm okay or if I'm going to the hospital. It's, you know, right away when you become pregnant, they test you for HIV and hepatitis. You know, and it's like, it comes back. You know, what if? What if they missed it the first time?

15:42What if she, what if, you know, I mean, why would I believe something from this office anymore, right? And then her sentencing is another one, you know, just this laughable punishment. That's how I would say, you know, I experience it. Just these, just the waves keep hitting you. They keep coming. On the day Julia and I were talking about this, she was pregnant. It was three and a half weeks before her due date. Do you feel differently approaching this delivery than you did approaching, you know, the birth of your first child, like, given everything that's happened in between? There's no comparison.

16:25It feels like a whole different lifetime has happened, right? And the, you know, I mean, it feels, you know, it feels like my husband and I survived a war. It's like a battle, you know, and it's a very, very isolating experience to go through. If everything goes right and, you know, and then you add something like the anger, you know, of the case with Donna, of the doctors making you feel nuts. And, you know, it's just, I have so much, I have so much anger.

17:23And you don't want that to be what you, I'm sorry. Oh, it's okay. Take your time. You don't. Um,

17:39it's been a, uh, process trying to let go of that because, you know, um, I have, I have a wonderful daughter. Sure.

17:55Soon, soon I'll have a son. And I need, I'm really actively every day working on trying to separate the battle that led to him from him. Right. And it's hard to explain, but, you know, they're connected. The story of the baby could not be told without the story of the clinic. And what this association felt like, this was something other patients also tried to name. The specific way the trauma was embodied. There's a part of me that honestly believes that the trauma from my first retrieval is the reason we had a miscarriage. And scientifically, I know that that is highly unlikely. But you read these stories about the trauma of birth and how different things that you do to babies when they're being born and at birth can actually affect them for the rest of their lives.

19:10and what's to say that the process of harvesting them, that trauma isn't ingrained in them either. Having a child after this and being pregnant and going to these sentencing hearings, that's something I haven't even talked about, is being pregnant and going, you know, and like how much of this did I actually, again, want my body to absorb while I was pregnant. Leia got pregnant spontaneously outside of her treatment at the clinic. Her baby was the only baby I met, a smiling baby wearing striped pajamas. He sat on Leia's knee. It was important for me to see a baby, because it complicated the way I was interpreting the outcomes.

19:52It was so confusing. I'd been feeling empathic outrage. It's not the baby. Why are these people telling the patients that the baby is the only outcome that matters? But my God, to be in the presence of a baby. that's literally the whole design of babies, to make you more attentive to them than to anything else. The baby is what matters. But everything else matters too. I have to say, there's like some gift from God that this child was naturally conceived and not conceived. I have to say, like, and, you know, I can only, in a way, do this because, like, I have a child who exists that they didn't help administer to exist.

20:38And then how are you different? Like what are the reverberations of this for you? I don't know how to talk about that. I don't. I mean, it's so deep, you know. That I don't know. I don't know if I could talk about that. because it's really like it's incredibly harrowing violent and in many ways you know it has been a kind of unspeakable experience i will say that also it's it's hard for other people to hear and listen to this is you can all like people like kind of cramp like you know there's a kind of like I don't know how to say this, but there's a kind of there's so much of your life you have to talk about when you're talking about this.

21:32There's so much of your life you have to talk about. Your marriage, your body, your psyche, your relationships with other people, the relationships you're going to have down the road with other physicians, what you're going to do later if you want to have another child, etc. That's its own thing. So when you talk about you know, like, what are the reverberations? I mean, they're, how do I even talk about my life without not talking about this? But how do I talk about this?

22:02Like, you know, one of the things that makes me angry is that, like, you know, Yale and Donna have put me in this position where I have to talk about the most, like, the most intimate, raw details of my life that maybe I don't even I want to reveal to myself that now, you know, I'm talking to you. But, you know, it's for a person who's private. The other violence of this is that we, if anything is going to happen, we have to speak about it. You know? So there's the other, an added bonus, an added onus on us that, well, if anything is going to happen, or that it doesn't happen again, we have to speak about it.

22:48There's kind of no, there's no like right turn or left turn out of this. You want there to be, trust me, I've thought of it. But that's the other reverberation is that we have to talk about it, you know, which is its own. That's just only now unfolding. Leah and the other plaintiffs in the lawsuit against Yale have to open up their lives for it. Do things like turn over their therapist notes. If they don't, Yale can seek a court order to get them. They have to deal with questions like, describe any changes in the frequency and satisfaction of your sexual relations with your spouse following the incident.

23:29When Leah says violence, this is part of what is evoked for me. This kind of bullying extraction. Of course, nobody has to join the lawsuit. I've heard from and of patients who didn't. They chose not to join, out of loyalty to their doctor. Or they just couldn't. They'd had a miscarriage. They were in a dark place, depressed. In no state for this. A lawsuit is a way to hold an institution accountable. To send a message or teach a lesson. to advance systemic change. It is also a way to get something, to make it fair, and to announce, you should not have dismissed me. You dismissed me once. You may not dismiss me again.

24:18One of the attorneys representing the patients, Kelly Fitzpatrick, went through IVF herself. She told me that this case is different from a regular medical malpractice case in many ways, including this one. These women were repeatedly ignored. And so that kind of sets it apart from a regular medical malpractice case. These women were gaslighted. They weren't believed. They were ignored. And that makes it different. They were ignored. That's what makes it different. So how do you do that? How do you sue for ignoring pain? This became a real question for me. Like, was there some statute? It's not like that, another one of the attorneys told me.

25:02you can sue because they should have investigated reports of pain. That made sense. But it wasn't exactly my question. There's the harm that comes from not being believed. But then there's the harm of not being believed itself. I kept reading around, doing Googles like, how do you sue for not being believed? How do you sue for not being believed women? Lawsuit, women's pain not believed. And then I came across the perfect paper. It was called Misdiagnosis, Gendered Injustice in Medical Malpractice Law. I loved this title, Misdiagnosis, like a shiny banner across your chest in a pageant for female pain.

25:49The paper wasn't answering exactly my question, like it didn't open with the sentence, here's how you sue for ignoring pain. What it did do is explore how this issue of women not being believed in medical settings plays out in court. The author was a young attorney named Cecilia Plaza. She'd written the paper while still a student at Columbia Law School. She set out to answer a specific question about the gender gap in medical malpractice outcomes, which essentially is a question about whether women can be fairly compensated in the medical malpractice system. And what she found is that women likely cannot because the foundation of this system is did what happened to you meet the standard of care?

26:37If it did, you're kind of out of luck. Like, you're a woman, you think you're having a heart attack. You go to the ER, the doctor says it's just your anxiety, and sends you home. Then it turns out that you really were having a heart attack. Can you successfully win a case against this doctor in court? Maybe not. Because doctors misdiagnose so many women's heart attacks as anxiety that sending a woman home could actually be interpreted as a reasonable choice that an ordinary doctor would make. Just to be clear, Cecilia's paper is not a work of opinion. It is an empirical analysis based on a ton of data.

27:17And what Cecilia found is that women cannot expect to get as much money as men in this system, because dismissing women doesn't necessarily fall below the standard of care. So to win that heart attack case are other similar cases. You would have to basically make the argument that not believing your patient's report of symptoms or of pain is de facto below the standard of care. That's not currently the case, which is a little bit mind-boggling, but you would have to make that argument and the court would have to agree with you. Another thing that was mind-boggling to me in all this lawsuit stuff happened in the back and forth of Discovery.

28:05In Discovery, there's a part called written interrogatories. Each side asks questions, and the other side mostly objects. But even given that, I was taken aback by Yale's objections to some of the questions on the plaintiff's list. like, state whether there are policies and procedures concerning documentation and or record-keeping of pain at the clinic. Yale's objection is that this question is overly broad and burdensome. And as to a request for a description of the process for evaluating patient pain during and after fentanyl administration, Yale says that this is irrelevant, immaterial. I got that this was part of a legal game, but it was also a microcosm of the whole situation.

28:58All right, we're on the record in the matter of Lisa Gorski versus Yale University, docket number 216111762, Zakiya Simon versus Yale et al. The lawsuit is scheduled to enter settlement negotiations this month. That tape is of a hearing in January. One plaintiff told me that at a recent town hall, discussion focused on the possibility that Yale will offer a lump sum to the group and an independent party will decide how the money should be divided up. Those who had procedures before June 2020, the date Donna says she started stealing fentanyl, expressed concerns that their experiences will be considered, quote, less worthy.

29:41For the plaintiff, this, quote, has become another re-traumatizing experience of Yale slash others telling women you didn't experience what you believe you experienced, unless it happened between certain dates. It's now, again, someone not believing and discounting, literally, our reports of pain. The patient's attorney said they could not comment on this.