Alison Stewart: This is All Of It. I'm Alison Stewart, live from the WNYC Studios in SoHo. Thank you for spending part of your day with us. I'm really grateful that you're here. On today's show, Larry Fink has been called one of the last great humanist photographers. Now he is the subject of an exhibition at the Center for Photography at Woodstock. Curator Lucy Sante joins us to discuss the show and the impact and the importance of Fink's work.

Journalist Danny Funt will be here to talk about how sports betting has changed the culture of fandom and altered the experience of being a professional athlete, and we'll kick things off with our week-long series of things to do in all five boroughs. We start with Queens. Get ready to call in and share your love about the World's Borough. That's our plan. Let's get this started with a preview of the second season of the award-winning podcast "The Retrievals."

[music]

Alison Stewart: The first season of The Retrievals uncovered a chilling story. Women at a Yale fertility clinic left screaming in pain when their medications were stolen by a nurse. Now it's taking on something even more widespread and routinely overlooked, the excruciating pain someone would experience during C-sections. C-sections can be life-saving, but epidurals and spinal blocks don't always work. They can fail, and when they do, doctors and medical staff often are not responsive, and pleas for help can go ignored.

Season 2 centers around Clara, a labor and delivery nurse at UIC Hospital in Chicago. This happened to her when she was pregnant. Through voices like Clara, clinicians like Dr. Heather Nixon, and advocates like Susan Stanford, the podcast explores what it takes to push for doctors to change medical guidelines. All episodes of the podcast are out now. Susan Burton is the host of The Retrievals, and she joins me now in studio. It is nice to see you.

Susan Burton: Thank you, Alison, for having me.

Alison Stewart: Listeners, we'd like to get you in on this conversation. Are you an obstetric anesthesiologist? Let me try that again. Obstetric anesthesiologist. Is there anything you can find helpful in communicating with your C-section patients who are in potential pain, or listeners, have you experienced pain during a C-section? We would love for you to briefly tell us your experience. We do want to remind you, please do not call from a car if you're driving. That's very important for safety, but we would like to hear from you. Our number is 212-433-9692, 212-433-WNYC, or you can reach out via social media @AllOfItWNYC. What first drew you to telling the story?

Susan Burton: After Season 1 of The Retrievals, I received hundreds of emails from patients describing their own experiences of ignored or inadequately treated pain. Some of the most disturbing emails were from patients who said they felt everything during their C-sections, felt a scalpel in the flesh, felt an organ being moved around. I started looking into why was this happening, how often was it happening, and importantly, what people are doing to solve it. That's really the focus of these four episodes, is not just that severe pain is a problem, but that people are trying to solve it.

Alison Stewart: Were you looking for your next season already? Did you have other things up in the air, and this one just took precedence?

Susan Burton: I didn't make Season 1 knowing that there would be a Season 2.

Alison Stewart: Oh.

Susan Burton: As I was getting these listener emails, I was also doing a lot of interviews about Season 1. One of the questions I was often asked was, "What are the solutions to this problem in medicine of dismissing women's pain?" I didn't have a good answer. I'd reported a lot on what went wrong, but reporting on what went wrong doesn't automatically translate to solutions on how to make it right. Pain during Cesarean turned out to be a wonderful case study that married these two questions; Why is this happening, and what are people doing to solve it? Some of the lessons here apply not just to pain during Cesarean but to this problem writ large.

Alison Stewart: Was there one case in particular that caught your attention?

Susan Burton: It took me a while to find my way to the case that's at the center of the podcast,-

Alison Stewart: With Clara.

Susan Burton: -of Clara. This is a case at UI Health Hospital, a division of the University of Illinois Chicago. There's a doctor there who's the head of obstetric anesthesiology named Heather Nixon, and Clara is a nurse on the labor and delivery unit. Clara had a very painful C-section, and Heather was determined to make sure that this couldn't happen again. She began speaking about Clara's case. One thing led to another. I met Heather. I learned of her speech, and the story unfolded from there.

Alison Stewart: Let's talk about generally, and then we'll talk about specifics. What does a woman feel when a spinal block fails or the proper anesthesia isn't given?

Susan Burton: The sensation a patient feels can vary. That's true even if your block is working, and that's true if your block is not working. Some patients I spoke to did feel a scalpel in the flesh. One of them very memorably describes it in the podcast as the feeling of she felt like she was a beanbag being opened up. I would say that most patients who feel significant pain during Cesarean tend to feel it later in the surgery, and that's because the spinals and epidurals don't always block the pain from deep inside the abdomen as well as they block pain on the skin.

Alison Stewart: As you were comparing C-sections with other surgeries, do other types of surgeries have the same percentage of people reporting pain?

Susan Burton: No. This is highly unusual. There's no other major surgery where 8% of patients, which is the figure I've landed on as the best available estimate of how many patients feel significant pain during Cesarean. There's no other major surgery where this happens.

Alison Stewart: How does pain during a Cesarean section impact life afterwards?

Susan Burton: That's such an important question. Because the thing is, this pain isn't just a problem for the few minutes after the surgery. It can affect patients for years. There's a lot of research on birth trauma and PTSD symptoms. I talked to patients who were still struggling with this years after the births of their children. There is a trauma expert in the podcast, who says something, a detail that's just really memorable to me, "The birthday of your own child can become a nightmare in a way." Right?

Alison Stewart: Oh, interesting.

Susan Burton: Because it brings you back to the trauma.

Alison Stewart: That's really interesting.

Susan Burton: Yes.

Alison Stewart: When you were making your list of people that you wanted to talk to for the podcast, who was on that list?

Susan Burton: I really wanted to talk to healthcare providers who were in the room during these surgeries. Season 1 focused primarily on the experience of patients. It was an emotional investigation into that experience, and I really wanted as much as possible to understand what was going on for healthcare providers themselves.

Alison Stewart: My guest is journalist and podcaster Susan Burton, the host of The Retrievals. This season is about C-sections. It's from Serial Productions, by the way, and The New York Times. It's a deeply reported series and investigates why so many women experience severe pain during C-sections and why their pain is so often dismissed. Has anything like this happened to you? We'd like to hear about it. Our phone number is 212-433-WNYC, 212-433-9692.. Clara's story is amazing because she is a delivery nurse. She works in Labor in a big hospital in a big city. She's pregnant with twins and is scheduled for an evening induction at the hospital she works at and she arrives. First of all, what went wrong?

Susan Burton: There are a couple ways to answer this question. There's a way to really break the surgery down and say, "At this moment when this drug was given, maybe a better choice would have been to give this drug," but I think the big picture is that Clara said she was in pain, and the pain was not treated. That is the most important thing to remember when a patient is experiencing pain during Cesarean. It doesn't completely matter why the pain is happening. What's important is that you treat it.

Alison Stewart: There were a lot of people in the room when this happened. You had the OB surgeon, the surgical assistant, labor and delivery nurses, the pediatric newborn teams, the anesthesiologist. All of these people are co-workers, and they're supposed to be working together. Yet it seemed like no one-- and some of the people who were her friends, actually, no one seemed to stop when she said she was in pain. Do we understand why?

Susan Burton: I think that's such an important thing to point to, is how the-- It's not just the drugs and the epidurals and the spinals that make a difference, but it's the dynamics in the operating room. One of the most important changes to come about after this incident at this hospital is there is now a culture where really anyone in the room can say, "Stop. I have a concern. This patient doesn't seem to be okay."

Alison Stewart: It's interesting. This is a little bit of a tangent. I had a C-section, and I had the most amazing doctor, great woman. I do remember this. Two things she said. One, she said, "I think we should do it because the A team is here. We should do it now." Which leads me to two questions for you. First of all, is it a gendered experience, having a female doctor versus a male doctor? Did you find that in your reporting?

Susan Burton: It's so interesting. I do get this question a lot. Does it make a difference whether you have a male or female doctor? I don't know of any research on this subject, but I will say, apart from gender, sure, it does matter who's in the room, right? Like we want to pretend it doesn't. We want to pretend that every provider is looking out for us the same amount, but there are providers in all situations, not just Cesarean, who are more attuned to patient needs, who have more expertise in what they do. I think it's something important to point to.

Alison Stewart: "A team" may have been her way of saying, like, "These are my guys," but these were her people. This was her team that she wanted to work with. It made me wonder, are there A teams, B teams, C teams, D teams?

Susan Burton: Well, I think the word "team" is super important because in obstetrics, there are so many people, like you described, there were so many people in this room, and working as a team is something that, doctors I talk to, I know they think a lot about, and some of them were drawn to OB precisely because of that team aspect.

Alison Stewart: Cultures are hard to change. People don't feel comfortable speaking up in front of patients, especially in the emergency room. Do people in the field, in these teams, just generally speaking, do they feel confident to say, "Hey, we should stop?"

Susan Burton: I think that is something that is-- there's increasing awareness of those dynamics and of that being something that needs to be made possible for everybody in the room. Even, for instance, let's say there's a young obstetrician who's doing the surgery, and the young obstetrician suspects this patient might be in pain, but there's an older, more senior anesthesiologist in the room who maybe is saying, "Well, I think it's just pressure. I think it's normal." What do you do in that interaction? Right? What do you do? Like the anesthesiologist is treating the pain. Should the surgeon be staying in her lane? How do you navigate that? That's something that healthcare providers need training in.

Alison Stewart: What is something that you learned about getting an epidural that maybe you didn't know before?

Susan Burton: Oh, that's such a good question. I had an epidural for the birth of one of my children, and I didn't know anything other than somebody was behind my back putting something in. It was actually fascinating to me to learn sort of the technical part of how an epidural is inserted into a patient's back.

Alison Stewart: What is it supposed to do?

Susan Burton: The epidural, the anesthetic drugs that are pushed through the epidural bathe the nerves near your spinal cord. The idea, when an epidural is used for Cesarean, is to numb sensation in a patient's midsection, but to allow the patient to remain awake for a birth. I should say that an epidural is typically used when the C-section is not planned. You go to the hospital, you are planning on a vaginal labor, all of a sudden something changes, you need to go to C-section.

If you have an existing epidural for your vaginal labor, they will convert that epidural so that it can be used for surgical anesthesia. If you have a planned C-section, you're more likely to have what's called spinal anesthesia, which is also the kind of anesthesia where you get a needle in your back.

Alison Stewart: It is generally considered safer than general anesthesia?

Susan Burton: Yes. For years, neuraxial anesthesia, which is spinals and epidurals, have been considered the gold standard for Cesarean. Better pain control after birth. Again, they allow the patient to remain awake. General anesthesia carries some risks for pregnant patients, although increasingly people are looking at that data and saying, "Is it safer than we thought it was?" It's definitely safer than it used to be for a number of reasons, including that there are videoscopes that allow you to see down a patient's airway.

Alison Stewart: Clara, in her C-section, she can feel it. The epidural doesn't work? What goes on with Clara?

Susan Burton: Clara, she's been laboring for about 24 hours-- She comes to the hospital, she gets induced, she's been laboring for, gosh, maybe 24, 36 hours. She goes into C-section. When you go into a C-section, they will do what's called a skin test to see if the anesthesia is working. Clara's skin test was fine. She couldn't feel anything when they touched her skin, but when they opened her up, at some point after that, Clara did begin to feel sensation, so is there a way to say exactly what went wrong with Clara's epidural? Probably not, right?

There is a way to say what went wrong in the room, which was that the pain wasn't handled. It's funny, one of the doctors I talked to, asking her this question, "Well, why would an epidural not work?" She said, "There's a lot we don't know about epidurals." Sometimes the answer is that.

Alison Stewart: Let's take a couple calls. This is Elizabeth, who is calling in from Brooklyn. Hi, Elizabeth. Thank you so much for making the time to call All Of It.

Elizabeth: Thank you for having me on. 40-something years ago, I was pregnant with twins. I was two weeks late. I didn't realize I was going into labor. Called my doctor. She said, "Well, I'm here at the hospital. Come in," and said, "I need to take an x-ray." I decided I could not expose these two babies to radiation. She then said, "Well, you'll have to have a Cesarean." I didn't have a choice. They gave me an epidural, and they strapped me down, tilted me backwards, put a tent over my head, would not allow my husband to come in with me.

I started to feel something not pleasant, and then I also started to become sick. Nobody had asked me when I had last eaten, so I thought this was it. Somebody eventually noticed. I had a mask over my face and wiped away the vomit. I had two daughters in healthy condition, but it was so traumatic. I did not go back to my obstetrician, even for my checkup. I was so upset, so angry at how I had been treated, how I was forced into the decision. The first baby was head down. Second baby was breech. She didn't feel confident. I had no desire to have an x-ray. I did not want to put my kids in danger.

Alison Stewart: Yes. Elizabeth, thank you so much for sharing. Really appreciate your candor. Let's talk to Deborah from Park Ridge, New Jersey. Hi, Deborah. Thank you so much for making the time to talk to All Of It.

Deborah: Good morning. Good afternoon, I should say. I have two children. The first one was born by Cesarean, and there was a very, very kind, very, very elderly gentleman who was the anesthesiologist, who made very sure that I did not feel anything. I gave birth to a very healthy son. I planned to have a vaginal birth and did work and research to get ready for that. I was in labor with my daughter for 24 hours, was dilated, was evacuating the child as women do. When she climbed back into my uterus, no one had ever seen anything like this.

She's an adult now, and you can see that personality trait in her. Anyway, I was brought to the OR. No one ever saw that before. I was given the epidural, and they put up the screen and began to operate. This time, the anesthesiologist was a young woman, and I felt a lot of discomfort. That's a euphemism. I said to the woman, "I can feel this," and she just would not look at me. She was adamantine. She would not help me. It was really, really a very difficult experience, a very different experience from the first experience I had.

Alison Stewart: Deborah, thank you so much. We really appreciate you calling in. I wanted to get your responses to our two calls.

Susan Burton: In regards to the first caller and the vomiting and the nausea, it's really important for doctors to set expectations for patients about what they might experience during Cesarean. Nausea and vomiting are things that might happen. Then, as far as the second caller and the presence of the anesthesiologist in the room and whether that person's presence is comforting or not, that can make such a huge difference, if the person attending to you is attentive and caring or if they're more removed.

Alison Stewart: We are speaking with journalist and podcaster Susan Burton, the host of The Retrievals, The C-sections. We'll have more after a quick break. This is All Of It.

[music]

Alison Stewart: You're listening to All Of It on WNYC. I'm Alison Stewart. My guest is journalist and podcaster Susan Burton, the host of The Retrievals, The C-section. This deeply reported series investigates why so many women experience severe pain during C-sections and why their pain is often dismissed. Let's talk about Dr. Heather Nixon. She was the head of obstetric-, I can't say this, -anesthesia at the hospital. She's a pretty powerful arc in this story. She goes from being in shock to being in anger, to trying to change her whole department. First of all, who is she in the world of anesthesiologists?

Susan Burton: Dr. Heather Nixon is the head of obstetric anesthesia at this hospital, UI Health, at the University of Illinois Chicago. She is also very active in the professional society that sort of oversees obstetric anesthesiologists, which is called SOAP. When Clara has her excruciatingly painful C-section, it really wakes Heather up to the fact that, "My goodness, this is happening to patients all over the country, and I need my colleagues to see what I have. That pain during Cesarean has been normalized, and we need to do something about it."

A lot of times, these are obstetric anesthesiologists, they are passionate about obstetric patients. Maybe they aren't seeing patients in excruciating pain. They might not know that this is such a widespread problem. That's one thing. Then the other thing she's sort of thinking about is, "Well, even those of us who think we know what's going on for our patients, do we really know what's going on? Are our patients always telling us when they're in pain?" She sets out to change this within her own institution and in a bigger picture way.

Alison Stewart: This is an interesting text. It says, "With this pain, is this racial? This parallels maternal mortality issues where complaints of doctors not hearing patients telling them something is wrong as an explanation of higher problems of maternal deaths with Black women."

Susan Burton: There is so little research on pain during Cesarean in general. There's only one study I know of that discusses race and pain during Cesarean. This was at a hospital in Texas of 110 patients. This study found that Black patients were five times more likely than white patients to report pain during Cesarean.

Alison Stewart: This text says, "I think it's important to make a distinction between medication that we can use before baby is delivered, that we can use. The other thing to consider is that once the surgery is underway, it's very difficult to stop. The patient says, 'I'm having pain' because she might be hemorrhaging or we might be at a critical moment in the surgery, but we actually can't stop."

Susan Burton: There are points in the surgery when it's definitely more challenging to stop than others. There are points when the surgery can be stopped, and those situations can be awkward. If you're dosing the epidural with extra drugs, it can take several minutes for those drugs to kick in. Everybody can be standing around with their arms crossed waiting for it to work, but if that saves a patient from excruciating pain, then that's the right choice.

Alison Stewart: Can we talk about some of the things that Dr. Nixon has implemented? It's a very concrete system of pain scoring and documenting. Tell us a little bit why record-keeping is such a powerful tool for change.

Susan Burton: It's a great question. The first thing I'll say is I talked to a number of patients who had excruciating pain and found that it wasn't reflected in their records, which was so infuriating, so painful. Second, what Heather is doing at her hospital is anesthesiologists are prompted at regular intervals to get a pain score from the patient and then to ask more questions about what kind of pain and where, and then to use that information to decide on an intervention. This sounds very basic, but it's actually pretty unusual.

An additional advantage of it is it not only prompts anesthesiologists to ask about pain, it gives the patient an opportunity to do so, because there are a lot of reasons patients may not speak up about pain. Think about it. You're in the middle of the surgery, you're scared. Is something going to happen to your baby? Is it okay to stop? You don't know if it's okay to stop, so giving the patient an opportunity to speak up about pain, I think, is so important.

Alison Stewart: This is reminding me of, I think it was Atul Gawande who made the checklist for surgeons.

Susan Burton: Yes.

Alison Stewart: Do you remember? This is what it reminds me of a lot.

Susan Burton: Yes, this is exactly that kind of thing. Like it's building it into the workflow.

Alison Stewart: I want you to tell us a little bit about Susanna Stanford. She's in episode 3. Tell us who she is.

Susan Burton: Susanna is an extraordinary person. She had a painful Cesarean in 2010 in England, which is where she lives. In the year or so that followed, she had the experience a lot of patients do, which is like, "Oh my God, I didn't know this was a thing that could happen. Am I the only one it's ever happened to?" One thing led to another. She discovered she was not the only person it had ever happened to. She basically set out to try to address this problem. She went from patient to expert, and she has implemented-- she is partially responsible for implementing this, like systemic guidance in the UK that helps doctors address pain during Cesarean.

Alison Stewart: This is from the podcast. This is episode 3. I'm going to read an editorial by a British doctor. This is about the need to keep good records in case you got sued. It said, "It was all so simple in the old days. You simply injected the local anesthetic down the epidural, warned her that she'd feel a bit of pain, and told the obstetrician to get on with it. Then things began to become more complicated. First, women began to complain more, no doubt fueled by general changes in patients' attitudes as they made the transition from passive recipients of health care to consumers." That's from 2006.

Susan Burton: Exactly. [laughs] Exactly.

Alison Stewart: How did this help you-- Gosh. Did finding this out help you shape the way you thought about the podcast and about the problem?

Susan Burton: Susanna is the one who gave me that editorial. When she read it to me, I just had the reaction, like, "Well, the problem is the women started speaking up," but I think it speaks to something bigger symbolically, which is that it matters that patients are speaking up. It matters that healthcare providers too are speaking up about this. Healthcare providers don't want this to go on, healthcare providers don't want patients to be in pain. It's crazy that, that was written in 2006, but it's wonderful that people are doing something about it now.

Alison Stewart: We got an interesting text here that says, "How can fathers be effective allies in this?"

Susan Burton: That's such a great question. I think being educated, understanding that pain during Cesarean is a risk and knowing that there are solutions for it, and knowing that you can advocate for your partner in the operating room.

Alison Stewart: What was it like for you to hear these stories? Because many of these stories are really quite raw. You as a journalist and as a woman.

Susan Burton: These stories powerfully affect me. It's a lot to take in. I feel enormous responsibility to the people who share these stories with me, and it's the kind of thing where somebody would write me an email and I would read the email and just have to sit there for a while before being able to respond. Yes, I'm powerfully affected by this stuff.

Alison Stewart: Have you gotten any pushback yet?

Susan Burton: Gosh, that's a good question. I haven't gotten any pushback yet, but the podcast has only been over a few days. I'm sure there will be pushback. I'm sure there are things I could have done better. One of the things I really appreciate about medicine is that when something goes wrong in medicine, there's a real culture of looking at went wrong and thinking, "How can we do it better?" That's something that I like to bring to my own work too.

Alison Stewart: Is there anything I haven't asked you that you think is really important that we should talk about?

Susan Burton: You've asked such great questions. I think something I would want to leave listeners with is that pain during Cesarean is a problem, but there are things people can do about it. Most C-sections, the pain is tolerable and limited to certain parts of the surgery.

Alison Stewart: The podcast is The Retrieval, Season 2, The C-sections. I have been speaking with journalist and podcaster Susan Burton. Thank you so much for joining us.

Susan Burton: You're welcome. Thank you for having me.