Ep. 6: The U.S. Maternal Mortality Crisis Part II | Empowered Health

Emily: I’m Emily Kumler and this is Empowered Health. Last week’s episode focused exclusively on race and maternal mortality and maternal morbidity because we wanted to dedicate a full episode to how race and racism is playing a huge part in this crisis. This week we’re going to look at how this problem came about in a more general all-encompassing sort of total population way, as well as trying to like really dial back on what the systems are at play and who is changing those systems to try to fix this problem.

Casey: You know, my C-section was fine. It was obviously an emotional time, but then a week after I just wasn’t feeling right. And after I woke up from a nap then I could pinpoint it and say, you know what, my abdomen hurts. I’m going to call my doctor. The Ob that delivered my son, I loved her. She was not on call that weekend, so I spoke to one of her colleagues and her colleagues said, “you know, what you’re experiencing is very normal. The uterus contracts after, after birth. You’re breastfeeding, that speeds up the process. C-sections and surgery in general is known to slow digestion, so you might be experiencing some mild constipation on top of that, which could be contributing to your discomfort. So, you know, just hunker down and you’ll be fine. You’ll get through it in a couple of days.” I I took her at her word. I had no reason not to believe what she was telling me. It was, I was a first time mom. It was my first time in the postpartum period. I really didn’t have a baseline of what to expect. Later that evening I remember just telling my husband, you know, I’m just gonna hunker down in the bedroom and we don’t rest. I’ll keep the baby there. You know, I’ll just stay in bed. I think I just overdid it yesterday and he was, “Okay. Yeah, sure.” He popped in one of our freezer meals for dinner and brought it upstairs for me to eat in bed. And I remember even even then very specifically like I’m playing with the food with my fork and I’m like, I just don’t feel right. Like I can’t eat. So later that night I woke my husband up and handed our newborn to him and said, you know, “I’m in so much pain right now. I need you to take care of him because I physically can’t do it anymore.” And by then, I mean I had been on my bathroom floor for most of the night, just in agonizing pain. And I think about that. I was slowly dying on my bathroom floor with my husband and son in the next room. And why weren’t we calling for help? Like this is not normal. So I did not call her again until 7:00 AM on the dot the next morning. That’s when she said, you know, maybe should go to the ER in case we’re missing something. And that was really hard to hear because for one, my first thought was crap, we should have gone to the hospital last night. Like we just wasted a whole lot of time when we could have been treating this. Well even before that I couldn’t get dressed. I couldn’t, I didn’t have the strength to even get out of bed. My husband had to dress me and carry me out of the house on his back. And my mom and my sister were at our house at that point, so as we’re going down the stairs, I looked into my son’s room and my mom was sitting in our nursery chair rocking him in her arms and that was when it hit me. I might not ever see him again. This might be the last time, and I asked her to bring him to me because of all the scenarios playing out in my head. I didn’t want any single one of them beginning without me kissing him goodbye.

Emily: That was Casey Cattell. She finally arrives at the hospital after her husband has basically determined they don’t have time to call an ambulance, that he will just drive her as fast as he can. And when they arrive a portable ultrasound reveals that she is internally bleeding from six different places. Her uterus has ruptured. She has a Hematoma on her C-section incision, on her uterus, under her rib cage. She has two muscle bleeds and an artery has burst in her lower abdomen. As she said to me, she shouldn’t be alive today to be caring for her son, but after surgery and 22 units of blood, they saved her life. Unfortunately, Casey’s story is not really an isolated incident. The CDC estimates that 50,000 women experience these kinds of serious life-threatening complications related to childbirth in 2014 and they estimated that those numbers were only going to continue to climb. The CDC also says that 60% of these severe morbidity cases are preventable2, meaning even though the lives were saved, the complications shouldn’t have happened in the first place. So this all begs the question, what is going on? Why are we getting worse at this and not better? We know it’s more dangerous to give birth today than it was for mothers the generation before. Experts say that in the last century, the big problem was that we intervened too infrequently and now the pendulum has swung and we are intervening too much. We’re going to talk to Dr. Neel Shah, who is the world’s expert on C-section research.

Dr. Shah: Yeah. Over the last generation, or two maybe, C-section rates have gone up by 500% in the U.S. Actually when you look at it globally, it’s even crazier. There’s 120 million babies born per year in the world and 26 million of them, so almost one in four in the entire world, like from sub-Saharan Africa to the Upper East side, like the entire globe. This is now a very common way to have your baby. And it’s become the world’s most common surgery and it’s not necessarily because we’re designed to need surgery that often.

Emily: So in your research, it was the first time that I had ever even, you know, I’d heard all these things about like, oh, it’s because women are heavier. It’s because women are having babies later. It’s because the cost is less. And you basically went through very systematically and looked at each variable and measured it in a scientific way and determined that actually those factors were not as important as what door you walk through. Right.

New Speaker: No, with such a remarkable change, it’s amazing that it kind of snuck up underneath our noses. That it’s surprising to people to hear that not only is it one in three Americans that get major surgery to start or grow their families. I mean there’s other ways, you can get a goldfish or something, but if you’re gonna do it through childbirth. One in three are getting major abdominal surgery and these are like young otherwise healthy women for the most part. And so there are all of these narratives about what’s driving it. And the number one narrative I hear is actually blaming women, which is upsetting because you know, first of all it’s less than half a percent of moms who say that they want one off the bat and we call those elective C-sections.

Emily: Right. Cause that’s another big thing. People are like, oh mom’s are asking for it. That’s not true.

Dr. Shah: Yeah, I mean there’s a media narrative around it because Victoria Beckham, apparently, had a C-section and there was like a UK Daily Mirror headline that said too posh to push. Little Spice Girls reference. Whole thing about how women are requesting them, and that’s just not a thing. And then there’s a separate narrative about how moms today look different than moms in the 70s say before this trend really took off, and that’s true. I mean moms are older than the used to be. There is more obesity, there’s more chronic diseases like high blood pressure and diabetes. There’s more IVF and as a consequence of that there’s more multiples. Like you see a lot more twins out in the park these days then you did like a decade ago. But turns out all those things explain surprisingly little because even for a young healthy thin 18 year old, just in her lifetime alone, her odds of getting a C-section whether she needs one or not have doubled.

Emily: I mean and that goes against the myth around why people get c-sections, right?

Dr. Shah: Yeah. If we’re not blaming the women, we’re blaming the clinicians. And that also like requires unpacking cause people are like, well there’s this whole idea of defensive medicine that doctors are afraid of getting sued and that that might be driving it. Or that they’re doing it at a convenience because they’ve got somewhere to be at 5:00 PM and so

Emily: Right, or that you can do more in a day. I had heard that too. Right, you can deliver more babies via C-section in a day then you can sure waiting around for

Dr. Shah: Or the one about them getting paid more to do the C-section. And like the story about the demographic changes in our country, they all have shades of truth to them, but none of them are like the silver bullet answer. Cause when you look at periods of time where nothing has changed in terms of how we pay people. Nothing has changed in the malpractice environment. Nothing’s really changed in scheduling. C-section rates have continued to climb kind of relentlessly in spite of those things. And so there’s something else that must be driving it that we’re not seeing.

Emily: Okay, so what is it?

Dr. Shah: Well, the pithiest way that I can explain it is that time has gotten more expensive. So I know that’s a little bit abstract, but there’s two semi-abstract explanations that’ll break down. One is that time has gotten more expensive and it turns out labor takes patience. Childbirth is a natural process that requires patience from everybody. The other property

Emily: Including the mom.

Dr. Shah: Including the mom, yeah, absolutely. But then the system around her, the problem with systems is that you can’t touch them. Systems are like culture. How do you like sink your teeth into culture? You can feel it and you can definitely feel it when it goes wrong, but systems are like that and we’ve designed systems and healthcare of enormous complexity. That’s the problem and we’ve made it so that what we need to do is make the easy thing to do the right thing to do. But right now the wrong thing to do is the easy thing to do. Turns out your grandparents were probably born at home. I don’t know for a fact, but if I had to guess and put money down on it, they were probably born at home. There was a generation that’s still alive that was largely born at home and then it was just relatively recently that we institutionalized childbirth and good things happen as a consequence of that. And some bad things too. One of them is that we designed the birth environment to resemble an ICU. So 99% of American women deliver in environments that look like ICU surrounded by surgeons and we get a lot of surgery. So if you look at it that way, it doesn’t really take a rocket scientist to put it together.

Emily: Right. But at the same time, I think it’s interesting because I feel like the common narrative is also this idea of like infant mortality and maternal mortality. And I mean the U.S. has one of the worst rates of any industrialized country in the world, right? So it’s not like maternal mortality is great, but I think people think like, well, people used to die in childbirth all the time and we’ve cut those rates so we’re doing better. But your point is sort of like, well, we’ve swapped some good things for some bad thing.

Dr. Shah: it just turns out it’s just a more complicated narrative in that– but really not that complicated. Not so complicated that the moms and the families and the people who have kids and are kids can’t understand that you can basically hurt people in two ways. You can hurt people from doing too little too late, which is the problem of the last century or by doing too much too soon, which is the problem that we’re in the middle of now.

Emily: So the pendulum has just swung too far in the–

Dr. Shah: It has. Yeah. It’s all about that balance. The challenge of our country actually is that we see both problems in tandem. 75% of our land mass in our country is rural and we’ve got tremendous access issues to care where if you live in many parts of Kansas or Oklahoma or South Dakota, like there’s a coin flip odds that you’ll be near anybody qualified to take care of your pregnancy. And a lot of the mortality problem actually is not a problem of people who go in and labor and have an acute event. It’s people who are actually dying before they ever get a chance to labor or well after. There’s this whole public narrative about maternal mortality. I think this is really important because it’s true, there are more moms dying in childbirth today than 20 years ago. So if you’re trying to start or grow your family, it is a riskier proposition for you than it was for your parents.

Emily: That’s ridiculous. Right?

Dr. Shah: Ridiculous, yeah. I mean, prosperity has grown in the last generation, but the risk for starting your family has gone up significantly.

Emily: Well, it’s also interesting to me because I think from the perspective of being a mother and having had two pregnancies, my mom had four kids and my mom always talks about how, like when I was pregnant, it was like every test I was nervous about, right? And I was always going to the doctor and I was always feeling on edge of like, oh, maybe something’s gonna be wrong. And I remember at one point she said to me, you know, Emily, I think that maybe with the fourth child I had an ultrasound, but other than that basically the doctor was like, you know, you come for regular visits or whatever and then if there’s bleeding you should call me or whatever. But she basically was like, you know, by and large we were told that we were healthy unless something really obvious happened that would trigger you to be concerned. Whereas it was the opposite. I feel like we’ve made birth such a scary experience that I understand why women are like, I just want to go in, get the epidural, be done with it, not really be an active participant in this. And then that has this sort of double-edged sword where when there is a C-section, people then feel like, oh, well did I do something wrong? Should I have done this? And there’s so much guilt that women mothers feel anyway and we add this on and it becomes sort of like a snowball effect, right? Where nobody could even really talk about it, which is why I wanted to get you in here and try to tackle it because I think there are things women can do to regain some of that control. And as you’ve said before, sort of be part of that medical team.

Dr. Shah: Thank you actually for saying that because I think whenever we talk about C-section rates being too high, it’s very hard to talk about child birth of that immediately personalizing it. And the last thing that I want to do is either make women who have had C-sections feel like they did something wrong or invalidate their experience or to just terrify people out there about the maternal mortality problem. But I think the crux of it is exactly what you said, which is starting with what every woman deserves, which is more than emerging from the process unscathed. And if we only design the system to go after mortality, then that’s all we’ll get. But women deserve more than that. They deserve care that’s safe, but also supportive and empowering. And the reason for that, those seem like soft ideas, but whether it’s your first baby or your fourth baby, this is the moment of identity formation as a mom, it really matters to you. Which is why when I’m in the grocery store and people find out what I do for a living, they tell me their whole birth story. You know, like so every woman deserves support and what that really means is having a care team that believes in you. That’s a really big part of it. It’s this enormous athletic event being in labor and it’s very much like a marathon and your uterus is like this huge muscle that takes up a big part of your body and then it works hard for longer than it takes to run the entire Boston marathon. I’m like, you wouldn’t do that without some training, without like a coach.

Emily: Right. That’s a good point. Like I’m not going to show up for the Boston marathon tomorrow and think that I can do it.

Dr. Shah: That’s right. So everyone benefits from support and from coaching and from careful monitoring, which can be done thoughtfully. You know, ultrasounds have a role for sure they’ve made care better. And then many people benefit from medicine too, and then very few truly benefit from surgery. But the problem is that we’ve designed the system entirely backwards.

Emily: Tell me more about that.

Dr. Shah: Well, I talked about how the labor and delivery room is an ICU. Let me qualify that. So when most people think of an ICU, they’re thinking of a ventilator, right? But what defines an ICU actually is not any piece of machinery, but the ability to have one nurse per patient. That is the definition of an ICU. So the cardiac ICU does that. So does the labor floor. The cardiac ICU monitors vital signs in real time. So does the labor floor, that’s what that fetal heart monitor is. The cardiac ICU adjust medicines every minute to minute and that’s what the labor floor does with oxytocin. That medicine that they’re giving you when they’re inducing your labor. The only difference between the ICU and the labor floor is that in the ICU– well actually on the labor floor of the operating rooms are attached, which makes it the most intense treatment environment of the entire hospital.

Emily: Intense how? What do you mean by intense?

Dr. Shah: Meaning like there‘s the highest nurse staffing

Emily: Sounds good. I mean like as a patient I feel like great, I’m in really good care, right?

Dr. Shah: Yes. Well absolutely and that’s a really good point. So then it depends on like what it is that staff is meant to be doing and whether or not they’re working, you know what we ought to have is like an early reassurance system where we’re like constantly sort of looking for opportunities to reassure and empower you while also monitoring to make sure that nothing goes wrong. But what we have instead is a constant early warning surveillance system where we’re ratcheting up our perception of risk all along the way. And then at some point we just get to this tipping point where we’ve set this threshold where we’ll do the C-section and it’s okay if in truth, less than one in 20 truly need it. The other challenge is that people will procreate whether we give them a dignified way of doing it or not. And so what I’ve observed is in every part of our country and every part of the world, whatever the status quo is, is normal. So in the United States, one in three women get major abdominal surgery and then one in ten of their babies go to the NICU. And everybody seems okay with it cause that’s just the norm.

Emily: So Dr. Neel Shah has been working on this for most of his career and I think he really is now the world expert in C-section research. But I think one of the big takeaways for me, having interviewed him over the last few years, is that he has evolved his feelings on this. So while he started specifically looking at c-sections, which we know are a contributing factor to the high maternal mortality rates, he’s now sort of broadened the scope to look at how to bring moms more dignity through the birthing process. And I think this is essential because as we’ve said before, this should be a moment of incredible empowerment and sort of restoring autonomy to the mother and allowing her to make choices for herself, which is where the idea came from for a new model that he’s testing out in hospitals around the country where he has a dashboard that basically is a board in the mom’s labor and delivery room and it keeps on it all of her vital information as well as what her goals are. And this isn’t just a birthing plan. It forces the medical team to come in and talk to her. It’s really a communication tool that allows the whole team to serve her best both in the moment as well as for her long-term health, which is really the key to this. Up next, we’re going to talk to professor Knight, who’s from England. In the 1940s the U.S. had the same rates of maternal mortality as the U.K. and now ours have gotten worse and there’s have basically diminished.

Marian Knight: So, I initially started my training as an obstetrician, a specialist in OB/Gyn and I observed when I was doing my research, that actually, I felt there were quite a lot of women’s health problems that potentially could be solved much better at a population level. So I then retrained in public health and epidemiology. And as part of my current career, I now investigate all of the maternal deaths in the UK. And I have a program of research around complications in pregnancy, which complements that work.

Emily: Part of the research that Neel Shah did was looking at how hospital rates in the United States vary from 7% to 70% literally just based on what door you walk through. That to me feels like a real consumer sort of buyer beware situation in terms of giving birth. Right? But they did a follow-up study which looked at how women feel very loyal towards their OBs. And so even if they find out that the obs going to be delivering their baby in a hospital that has the 70% C-section rate, there still is this sort of internal justification or psychological process that happens where she says, I’m healthy. Chances are this, ob has my best interest in mind. Maybe it’s 70% for other people, but I won’t fit into that category. I think that’s fascinating really, right, because I think pregnancy is such a time of vulnerability for women and that I can completely understand why they feel a loyalty to their OB and by the time they figured out where they’re delivering and maybe they don’t even, you know, I don’t think the majority of American women are actually looking into the Leap Frog reports on what the hospital rates are. But it was fascinating to me to find out that even when they did know they weren’t going to switch.

Marian Knight: That’s very interesting. I mean we do obviously all place a lot of personal trust in our doctors and midwives.

Emily: And so in the UK, the majority of healthy moms are delivering with midwives. When did that, has that always been the case or was there a time where OBs were the primary deliver?

Marian Knight: That has always been the case. It’s, I guess, becoming a bit more formalized more recently because we’ve had some big studies which have actually shown the benefits of midwife led care for low-risk mums. So we know that if you’re a low-risk mom, if you’re a healthy mom, it’s just a safe for your baby to deliver with a midwife and you are less likely to have interventions such as C-section or forceps birth. And we’ve got very good national studies that have shown that. And as a consequence of those findings and the fact that we need, you know, our obstetricians are a precious resource who are going to be needed to deal with the caring for the women who’ve got more complications as our population gets older. And has those medical problems. We now have a, are undergoing quite a reorganization such that there is much more of a focus on making sure that low-risk women are offered that choice and can get that midwife led care and similarly that we can direct the right high-risk women to the obstetrician led care.

Emily: And so can you tell us a little bit about what that means to investigate a maternal death?

Marian Knight: So in the UK, every maternal death, so every death of any woman who is either pregnant or has been recently pregnant. And that means up to a year after the end of pregnancy, every woman’s death is reviewed by a panel of experts who are either doctors who specialize in obstetrics or potentially physicians, primary care physicians, psychiatrists, emergency care physicians or midwives or [?} so that we can identify any lessons learned from that woman’s death to improve our care the future, to try and prevent women from dying. And when I say any pregnant women or death after the end of pregnancy, that’s however that pregnancy has ended. So we also investigates if women have died after miscarriage or after a legal termination or after a complication such as an ectopic pregnancy as well as women who’ve given birth.

Emily: So one of the things that I’m really interested in is this idea of systems and how maternal deaths in the United States are really not cataloged. I mean, they’re not tracked. There isn’t a review panel as of yet. There is the bill that just passed in December that President Trump signed off on. And hopefully that will be the first step in sort of this progress forward. But one of the reasons I was particularly interested in talking with you is that there is this sort of match up in terms of maternal mortality rates with England and the United States in the 1940s. Right. And then I sort of get a little lost on when things started to change. It seems like in the 80s there was a big surge in the U.S. And now we’re in this position where I think we have three times the rate of maternal mortality than you all do.

Marian Knight: I think with anything actually recognizing the importance of actually doing something and valuing women’s lives, somebody has to take that step somewhere. So we really only in the started looking in detail at women’s deaths by suicide in this century. So from the early two thousands and have identified a huge number of messages to improve that care. So, you know, back in the 80s, we obviously we’d been, we stopped our confidential inquiries actually in the 50s, but in the 80s, all of the brought all the UK nations together and have continued to investigate maternal death. So actually just recognizing that it’s important and having the government buy in that it’s important and allocating some resources cause it does require some resources to do that. It’s clearly going to make a difference. I do think the health systems potentially play a part. We obviously have a public health system that is free for all at the point of contact. And so women are used to being able to just phone their doctor or their midwife if they are feeling unwell or simply need advice. And indeed are able to do that pre-pregnancy. So women are potentially able to think more about getting their pre-pregnancy health as good as it can be.

Emily: One of the things I was hoping you would be able to sort of explain to me a little bit better is when these review boards get put in place, how does that change the culture? How does that sort of inform people’s decisions in a way? I mean, you’ve seen market improvement. Why is that? What is happening?

Marian Knight: So I think, I mean, we’re in the lucky position that our investigations are so embedded that everybody expects it to happen. Sometimes some things that hold up good quality investigations are if people feel threatened. If they think that medical-legally it might challenge their practice. So everything we do is anonymous. It does mean that, because I’m looking nationally at the whole picture, I can identify where there are system differences that need government actions to change. So it’s helpful. The other thing that.

Emily: Can you give me some examples of those?

Marian Knight: So, for example, just to pick up again on the, on the issue of, of women with medical complications, we need more specialists who are trained in obstetric medicine.

Emily: So like an epilepsy specialist who can work with pregnant women but not an OB who specializes in epilepsy.

Marian Knight: Exactly, although they’re not as specific as epilepsy. So one of the issues with maternal medical complications is that there are, there are women with, there are a huge range of medical conditions that women can have. And there might only be a few women with that very specialist condition. So epilepsy is obviously one of the more common medical complications. But there are other immune complication example where where it’s relatively uncommon, but actually having a physician who is much is trained specifically in pregnancy medicine can make a real difference to care of those women. And if nothing else gives, it is a source, somebody at the end of the telephone that an OB-Gyn in a peripheral hospital can be phoning to consult with. But until last year, we actually only had those specialists in London and Oxford. And from taking the messages from our maternal mortality reports, and by me working with the clinical director for obstetrics within NHS England, the government announced maternal medicine networks. So now we have budget to train those obstetrics physicians. So those specialist doctors dealing with pregnancy medicine across the whole of England. So to enable that expert consultation service to be available for women across England. So that’s just an example of whereby the report then working with government that has led to the funding and a changing of the way the service is going to be provided across the NHS.

Emily: So we have a huge number of women who end up dying from hemorrhage. Right. In some cases there seems to be a pressure put on the practitioner or the hospitals for not believing a woman when she comes in and she’s postpartum or pregnant and she’s experiencing a bad headache. Right. Which we know can be a sign of a stroke or other things. Do you have protocols in place like we have here, if a man shows up in a hospital with chest pains, right? There’s a certain amount of time by which he must be seen and there’s a certain amount of time and protocols for him to get into a cath lab. There doesn’t seem to be anything like that in the United States for pregnant women or postpartum women.

Marian Knight: So we have very detailed guidelines about care of the women with the headache and for management of hemorrhage. In fact, I think in obstetrics we almost have more guidelines than any other specialty. They don’t specifically have time criteria, but they will have referral pathways. They would say, for example, get the obstetrician down, don’t hang around. Or, I mean, one of the messages we’ve to put out in recent reports is, you know, whenever a pregnant or postpartum woman comes into the emergency department, get the obstetric medical team to come and see her, that she is getting that expert care. We have like {?} specific time criteria for particularly strokes, as I say, we don’t have those in pregnancy.

Emily: But do you think having just the protocols in place prevents death?

Marian Knight: There’s no doubt in my mind, particularly in relation to the blood pressure related complications, it’s made a dramatic difference. So we have virtually no deaths from Preeclampsia and Preeclampsia-related disorders now because of very comprehensive guidelines particularly about treating severe blood pressure and about what to do and what to do quickly.

Emily: And do you think that this bill that was just signed by president Trump in December is going to be the, I mean, it’s obviously a step, it seems in the right direction, sort of towards copying this plan that you all have in England of maternal mortality review boards. But is that enough? Or like what is, you know– I understand you’re involved in sort of guiding the United States in some ways in this area. If you can talk a little bit about, you know, sort of this is the first step or

Marian Knight: So you’re quite right. So, getting the data is the first step, but the data alone won’t make the difference. So for me, you have to make the step from, from not just the what, but the why so the data tells us what’s happening. But we need to find out why it’s happening.

Emily: So, obviously studying the problem and getting good data on it, it’s going to be step one, which we haven’t even done yet. So back in December, President Trump, sort of in the cloak of darkness, it’s like really got no press at all. And I heard from somebody who was like the day before the government shutdown, and maybe that’s why it wasn’t more publicized, but he signed something called the Preventing Maternal Deaths Act, which for the first time authorized the CDC to give money to states to form maternal mortality review boards. Those review boards will then go and study any maternal death that happens within a year of the woman giving birth or delivering the baby. And one of the lead authors of the bill was Republican Representative Herrera-Beutler, who is from Washington. And she’s going to explain to us why this was necessary.

Emily: I was really interested in part by how we don’t even really have the data. You know, we sort of know women are dying, then this is a big problem and we know certainly that African American women are dying at a four times higher rate. But the other part of this is that I feel like the bill was signed as a bipartisan– it seems like everybody was on board for this. There’s not a lot of stuff added to the bill. Right? This is like sort of a great story, and I couldn’t believe that. I didn’t know anything about it.

Herrera-Beutler: I asked that all summer because I had hoped it would have been signed into law last summer. In fact, I was pitching it kinda to our leadership as hey, you guys want to, you want to have something to be able to tell your members, go home and talk about at Mother’s Day? Let’s make this a mother’s day bill. Let’s get this thing going.

Emily: Right

Herrera-Beutler: I couldn’t understand why it wouldn’t have gone sooner and [?}– just like you said, nobody’s against it. No one’s against it. You’re not against moms, you’re not against babies. This is, you know, how could you possibly be against it? But yet the urgency of the situation has not been communicated well enough, number one. And two, you know, in my experience in this place, this is my fifth term. You know, it’s not my first time around the block. My experience tells me that unless it’s a crisis issue among the people you serve or it rises to the level that enough people are communicating to their member of Congress about it, it gets put on the backburner. And fortunately, you know, working with different folks in this process, including fathers who lost, you know, young fathers with kids who lost mothers in the process of birth. They didn’t know it was an issue until it was too late. So it’s been a challenge just to get the word out. And it’s surprising because what we know is about seven to 900 women a year die as a result of childbirth29, either in childbirth, shortly after, as a result of or complication from. The sad number to me is that the CDC estimates 60% of those are preventable. So over half of those women, their deaths could have been prevented. And any other area that would be– if this was a disease, right? Some strain of the flu and this many people were dying a year from it. It would be covered pretty extensively. People would be worried about it. Maybe it’s because women have been having babies for centuries. People just kind of, it just kind of falls into the stream of life. I don’t know.

Emily: The other number that I’ve been struck by is that there’s 50,000, they’re calling themselves like maternal survivors or women who have had–

Herrera-Beutler: Like the morbidity, like the ones near death.

Emily: Yeah, I mean that’s striking too, right? That seems, especially when you compare us to the other countries. And so, one of the things I’ve done is that we’ve talked to somebody in Britain whose been involved in the review boards there. And it seems like you guys are doing, was that something that you based any of the information and the bill off of?

Herrera-Beutler: This kind of came to me mostly from some of the different advocacy groups and through my–so no, I didn’t get it from Britain, although that doesn’t mean they didn’t. In terms of best practices and kind of seeing what’s happening around the globe, you know, a lot of our ideas came from whether it was March of Dimes or Preeclampsia Foundation or ACOG which is, you know, College of Gynecologists and OBGYN or maternal fetal medicine specialists. So they all kind of as a coalition had been laboring in the field. I’m sure they got it, some of their information there, but it was more just people started sounding the alarm. And we started a maternal mortality or a maternity care caucus, me and Lucille Roybal-Allard, she’s a Democrat from down in California, a year and a half, almost two years ago now I think it’s been. Again, it was the first of its kind here in Congress. I assumed that there would be something like this already happening and there wasn’t. And so our first few issues had to do with folic acid, getting that put into corn masa, which is part of white flour, you know, it’s been a staple for almost 30 years now we’ve seen a decrease birth defect rates. Well it wasn’t in corn masa, which shocked me. And so as we started to dig, we just saw some of these low level, I want to say low hanging fruit, these issues that just kept popping up so quickly. And that’s kind of where this idea for me came from was well you’re looking at birth defects here. Have you looked at the maternal mortality rate? My expectation is that this is purely a foundation. It is purely– every state needs to have an MMRC and every state, if you don’t have the state money for it, here’s federal money for it. In fact, we’ve got the federal money in our appropriations bill before we got the authorizing language done just to get the base level into every single state cause there are some states who don’t even have an MMRC. The next piece is making sure we’re standardizing the data we’re collecting. My expectation is as this moves forward there’s going to be a lot of clarifying or improvements made. Okay, we need more information about this. We need more information about how providers handle this or I think there will need to be more. But we were so base level cause there was nothing like this federally that–

Emily: And so does it require states to do this or just basically says–

Herrera-Beutler: It does not.

Emily: –if you want to do it, we’ll help you, that’s the idea.

Herrera-Beutler: Yes and that was part of why we wanted to make sure there was money available. There are very few states, and that was also why it was key to work with the coalition who has members in every state. I mentioned, I don’t know, four or five associations. They’re all active in some shape or form in every state. And so we expect that there’ll be part of the driving force at the state level of getting the board together.

Emily: Do you have any idea already have them or how many states? Or how many states don’t have them?

Herrera-Beutler: I think there’s– I’ve heard varying numbers between 25 and 30 that have them. But it’s a loose term. It’s a very loose term. So in Washington state, we have a pretty functioning one. It’s something that the state’s been aware of and looking at. Although there are still improvements to be made. I think in some states, they’re not getting quite the right detail and the right data.

Emily: Well and you want to be able to systematize so that you can compare apples to apples?

Herrera-Beutler: Absolutely, absolutely. And I think, you know, there are, this may not make some folks uncomfortable, but the reality is maybe the way the care is being delivered in some states is either not up to standard or maybe it’s just me, you know, there needs to be improvement. This may uncover some of that.

Emily: Yeah

Herrera-Beutler: There probably will be some uncomfortable findings, but that’s kind of the point. We’re doing something wrong.

Emily: So it wasn’t, I mean it wasn’t surprising to me, but it was interesting to find that you and your cosponsor in the house and the two in the Senate, you know, you’re all women. Do you think that that played a role in this sort of, this coming to fruition?

Herrera-Beutler: I don’t know. I felt like the first person who got on this, who was interested ended up leaving Congress and it was a guy. And so I remember thinking, oh no. Oh no for many reasons. Right? But oh no, because this is a huge and important piece of legislation. Fortunately, Diana DeGette was already on it, already a champion and already interested. So it was a very natural fit and I actually feel like we ended up at, because like you said, I feel like it ended up better. Possibly further along because of that.

Emily: One of the other things I’m interested in in this sort of comparison between the United States and the other sort of wealthy countries that have better maternal mortality rates, is that just the way our government is structured with state’s rights and that you know, a lot of the sort of regulation is left to medical associations. That there really has to be an opt in.

Herrera-Beutler: It is remarkable and you’re exactly right. It comes down to our fundamental difference in the way that we operate and you know, of course I want to respect that, but it is one of those things where if a state is doing something wrong and the citizens don’t have the ability to correct it, you know, that is a role– if I knew that there’s an area for the federal government to be engaged and help shine the light. Right? That’s part of what those same citizens pay taxes to us for. Again, my hope is the opt in with the promise of money and assistance is going to start the process in some of these states. I do think it will be a challenge in some areas. I mean for crying out loud, there are still states where it’s the first woman from Congress or one of the first woman that ever got elected, and you’re kinda like, okay, I wonder if women’s health is fairing well here or not. But even having said that, so here’s another thing. As you dig into it, you realize states that are supposed to be more progressive, have the worst numbers. So look at New Jersey’s rate with regard to women of color. If you’re an African American woman in New Jersey, you have a higher chance of dying as a result of being pregnant in that state, which is supposed to be, you know, it’s a blue state, it’s supposed to be progressive. Then in some of the other states, I think it’s 78 or 79 per 100,000 deaths. That is an outrageous number. That to me is so absolutely outrageous.

Emily: So what do you attribute that to or like the variation even between states?

New Speaker: The problem is I can’t answer that question. That is exactly the problem. And that and many like it across the country. That’s what this is supposed to do. This just gets us our foot in the door with getting that information. It’s pathetic to me that in 21st century America, I can’t answer that question for you because whatever information is collected is different in each state. It’s not standardized or it’s not collected at all. That’s ridiculous to me.

Emily: Dr. Etiebet is the head of Merck for Mothers, a $500 million organization determined to solve this problem. Merck for Mothers has made two major investments in two different kinds of efforts. The first one was working in partnership with the CDC and the CDC foundation to work with states on these maternal mortality review boards and at the time there were nine states who participated and what they did was they created something called MMRIA, which is MMRIA.org, which allowed these communities to share best practices. Whereas in the past they had been working sort of in isolation, which was really hard for them to come up with any kind of standard way of problem solving. They also realized in the course of this first initiative that the deaths were happening mostly outside of the hospital. And so there needed to be more ways to study and look at that. And then they also realize that there were three to four contributing factors that led to death in most of these cases, which is interesting. It’s not one thing. And so the next part is basically they take all that information and then they work on an action plan to make changes

Dr. Etiebet: And so our partnership with AMCHP, you know, which is the Association of Maternal and Child Health Programs that in 13 different states provided support so that they could actually take the recommendations from those committees and translate them into action and program.

Emily: Can you give me some examples of that? Sorry to interrupt.

Dr. Etiebet: Of course. Yeah, no, thank you. I was about to say I don’t know if you’ve seen the report, happy to share it with you. But for example, in Colorado, so the Colorado Maternal Mortality Review Committee identified a high number of maternal deaths resulting from suicide, homicide and substance abuse. And so what they did was use the findings to develop resources that provided guidance on how to best identify, treat, and refer a pregnant woman experiencing depression. The Public Health and Environment department launched a campaign to encourage pregnant woman to disclude their mental health systems with providers so that they could receive the care that they need. And this issue of pregnancy-related or maternal depression was also identified in Delaware. And what Delaware decided to do as a solution was develop, enlisted a specialist in maternal depression, again, to educate providers about this in one of their medical society of Delaware trainings. They also started a statewide course for nurses who were part of maternal transport systems. So women who were being transported to hospital via ambulance also had a health care providers, you know, during that journey who could respond to their signs and symptoms. Another example, you know, there’s so many great examples. The Louisiana, one of the things, again, a high rates of deaths associated not just with mental health and substance abuse, but also domestic violence. So what they did, or what the Department of Health did was partner with the Louisiana coalition against domestic violence. They created these shoe cards and English and Spanish at that could be hidden in shoes ,which had information on resources, including, you know, phone numbers, you know, et Cetera, so that women would have access, you know, to that information and could seek help when they needed it. So I won’t go through all 13 of them, but happy to share the publication with you. But I think what it shows us is that the solutions really do need to be locally you know, responsive to what’s happening in, in the locality and in that community. Again, there’s not, you know, one silver bullets, it’s not, you know, one size fits all type of solution. They really need to you know, be developed and be co-created, in the communities where these deaths are occurring.

Emily: So people like Dr. Etiebet or Merck for Mothers are partially at the table right now because of the work that Dr. Neel Shah did. I think one of his big contributions to the solution to this problem has been methodically breaking it down and looking at all the variables and trying to help understand as best as we can why this is happening. It seems like his big takeaway is this is not the fault of the mother. It’s not the fault of the doctor. This is a healthcare failure and we need to kind of stop blaming individuals and looking at individual circumstances and figure out how to change the systems so they can better serve mothers. Okay, there is one caveat to what I just said, which is that out of all the people that have been blamed, there is one cohort or one group that Neel thinks could probably step it up a little bit.

Dr. Shah: The fact that child health only goes with women is also kind of messed up, right? Like, I think all dudes need to step up their game a little bit when it comes to taking care of kids and taking care of society more broadly. But then I guess that’s pretty much the beginning and end of it.

Emily: So to talk about dudes for a minute too, I think that there’s something interesting to me because I feel like people who become really interested in this topic often will hire a doula, right? Or they’ll have a midwife, they’ll have somebody who’s often a woman who’s there by their side who sort of is coaching them through the pregnancy. Right? So it’s sort of like, to use your marathon analogy, it’s like that’s the coach, right? And the coach is there with them the whole time. And so when it’s time for the race, they’re there, they know the drill, they’ve practiced all this stuff. But for somebody who doesn’t have that, I mean the boyfriend or the husband or the dad is probably the most likely person to be in that role. And yet we sort of think of dads as like maybe holding the hand and not wanting to look at the vagina and like all of these sort of things. How do we as women try to open a dialogue with men where we get the men to step up and be the coach through this process. So your wife is pregnant and I assume you are her coach in a lot of ways or no?

Dr. Shah: Well, kind of. I’m her support person but she was really clear. I’m definitely not her obstetrician. It was clear that my job is to be husband and the dad.

Emily: Okay.

Dr. Shah: We all have lots of roles in life, but in the moment where my own child is being born, my job is not to be the clinician if I can avoid it. But yeah, I mean I think that having a doula is great because they’ve experienced what labor is like and have coached a lot of people through it and bring all that experience into the room. But I think it’s not just a matter of men stepping up their game as if they don’t want to. I think it’s a matter of defining their role, cause you know, even a generation ago they were kicked out of the delivery room.

Emily: Right.

Dr. Shah: And that was like a rule. What I’ve actually found is that most men want to be invited in. They want to be helpful. They just don’t know how. They often look a little bit lost. And then I think, you know, honestly, and this is even true for me, as a person who’s delivered lots of babies, if I’m being totally honest, but there’s something about fatherhood that’s I think a little bit more abstract than motherhood until you see your baby. Because the mom has been feeling the baby move and grow. And for dudes like there’s this moment, it’s actually my favorite part of being an OB, when you see a new dad see their child for the first time. It’s this incredible thing every time. My favorite actually, there was a time where I got to see it on a big TV screen because the dad was stationed overseas and just, it was like his whole face like blown up on the screen. And you see the moment where he realizes he’s a dad, , where it just goes from being abstract to really concrete really quickly. And so that was gives me a little sympathy for guys too. You know, it’s that, a lot of them have never seen blood before. It’s very new experience.

Emily: No and that’s what I mean it’s like how do we invite them in to the conversation.

Dr. Shah: That’s the first step.

Emily: I was even struck with like the the editor that was so defensive about his wife and it is sort of like, well you’re part of this too. Like we should all be having this conversation. For me this isn’t just a women’s issue topic. This is a–

Dr. Shah: Human being issue.

Emily: Yeah and a cultural issue in some ways, right. And so like I do think the idea of demystifying this a little for men would be helpful for women, right?

Dr. Shah: A hundred percent. And I think the first step is just inviting them in. It’s like with so much of this it’s just creating the permission to have a role and then the opportunity to have a role. And then most people will figure it out just from like their shared humanity. That’s what I found. And there might be ways to formalize it and to help them, but it’s not like you have to like go to school to learn how to be a good support person for your partner giving birth. You just have to like be invited and have permission and the opportunity to be there and hopefully a care team that’ll give you a role. You know, where honestly holding your partner’s hand is a pretty big thing. That’s my job when my wife goes into labor, like it’s to be on that end of the table.

Emily: It shouldn’t come as a surprise that a number of the people that we have featured on last week’s podcast and this week’s podcast are all involved in the March for Moms, which is taking place this year in DC on May 11th and it’s really a chance for women to advocate for other women. It’s a chance for moms who are so good at advocating for other people– moms against drunk driving, moms against guns– it’s like moms for moms, right? It’s time that we all started looking out for moms. So up next we’re gonna talk to the executive director of March for Moms and anybody who wants more information about the march, wants to participate, go to marchformoms.org

Katie Barrett: My name is Katie Barrett. I am the founding executive director of March for Moms, which is a nonprofit advocacy organization that brings awareness to maternal mortality and drives action to improve maternal wellbeing in the United States.

Emily: One of the things that I really want to get into right away is like what is the March for Moms? Tell me a little bit about the organization and also about the march itself.

Katie Barrett: Yeah, so the organization is new. We’ve had two marches so far. The third one will be May 11th in DC on the mall and it’s really just been a march for the past two years. And over the past year the board has decided they want to do more than just one day of advocacy and awareness around the issues that face moms in America today. And so they raised money and they hired me to work with them to figure out what that strategy should be for the next three to five years. And also importantly come up with a very tactical policy agenda to drive both federal and state change to improve the way in which moms are able to give birth. And also really importantly, how they’re supported after they give birth.

Emily: So can you talk a little bit about some of the other initiatives that you feel like are important that you guys are putting forward? I mean, it sounds like that’s a big one.

Katie Barrett: Sure. So we have three sort of state specific policy agenda topics right now and we are doing advocacy training around these topics. And two of the federal pieces of legislation that are on the table right now. It will be an online training. There’ll be a news about it on the March for Moms website and social media. But we’re doing it as an online training this year to have it be more accessible. Even if you can’t come to DC and do the advocacy the day before the march, which is May 10th, but you can get those skills and understand where your state falls on these policies and then get the tools to train yourself to be able to go advocate with your state legislators or your federal delegation in your state to be able to advocate for these policies. So, there are two federal acts, the Moms Act and the Mamas Act. Those are acronyms for things, but obviously they’re also the word mother in slang.

Emily: Easy to remember.

Katie Barrett: Yeah, they’re very easy to remember. So those are two federal pieces of legislation that we will be advocating for. But the three state specific policy topics are paid family leave, a perinatal mental health and that is in lay term kind of postpartum depression and awareness around being able to have more universal screening in the obstetric setting, in the primary care setting, in your kids’ pediatrician’s office to be able to do screening for maternal depression. But even more important than screening is being able to refer and coordinate care for the mom with the behavioral health clinician and clinical team that can help care for her. And states have policies around that that really run the gamut. So perinatal mental health being the second one. And the third is the development of maternal mortality review commissions. A lot of states have these. We have it in Massachusetts. And that is a sort of public-private commission of folks who review every maternal death in that state and they do a root cause analysis of what caused the death and advocate for changes within hospital systems and within the healthcare system more broadly to make sure that that doesn’t happen again.

Emily: And so that’s what the big bill that passed in December is giving money to the CDC to then go– so how will you guys play a role in that now that there is this federal funding going to it? I mean obviously you have to systematize the whole thing. Like you know, there’s a lot of work to be done, but I’m curious about how the organization will participate in that.

Katie Barrett: It’s a good question. I don’t have a full answer to it at this time, but I think our work will largely be around looking at best practices for setting up maternal review commissions, maternal mortality review commissions, and linking states with states who have set them up that are working well to help them know how to get off on the right foot when they haven’t had one today. But because of the allocation of funding and because of the rules that’s in the federal legislation that passed at the end of last year, more states will be able to do this going forward.

Emily: Are those looking at women who have had abortions to?

Katie Barrett: I don’t know.

Emily: Yeah, because I think in England they do, they look at like any maternal death and I feel like there’s all of these things that seem unknown. You know what I mean? Like we’re really at the infancy of all of this and there’s all the near miss, there’s like the 50,000 near misses that happen every year too that are so important to sort of try to figure out what went wrong there.

Katie Barrett: Yeah, so the mortality commissions go, right, they go like 20, 30% of the way there. There’s all of the near misses and other complications. And I mean I had a hemorrhage after my son, you know, everything turned out fine. But the hospital had a protocol around that so I wasn’t a near miss, I was a hemorrhage that was able to be remediated very quickly. But there’s whole spectrum of complications in birth that are, I will say clinical complications. There’s all the rest of the complications related to respect and dignity and feeling heard in birth. And there are no commissions for those right now. It’s a very small piece of the overall puzzle of how we need to be able to systemically look at outcomes in birth and be able to talk about it as a community and advanced changes to address it.

Emily: And I wonder like as you’re taking the reigns of this organization, which is growing, right. And I think the lens where people are interested in this topic also seems to be growing and sort of curious like how do you mobilize moms for moms? It seems like a no brainer that I also feel like we all are. I don’t know. It’s not even that like we’re tough on each other. It’s like we don’t have time, you know? So how do you, how do you get over that?

Katie Barrett: Absolutely. It’s, I think that’s the million dollar question. Um, I mean I am a mom here trying to organize moms, right? The board and you know, the niche that March for Moms, I hope we’ll be able to fail as the board has a number of high powered clinicians funded. We’re free from obstetrics, from the dual a world and in partnership with other industry players, healthcare payers, healthcare purchasers. I represent the consumer, the mom perspective on it. And this is the community that needs to come together around this issue. It’s not just moms advocating for a broad array of mom’s issues. It’s not just clinicians advocating for changes to clinical practice. It’s not just community based organizations or dual agencies advocating for changes for their space. We all need to come together and decide what the thing is that we want to advocate for and advocate for it together.

Katie Barrett: But the hardest thing is that mom’s never take the time. I never take the time for myself. And we need to sort of make the case that if you don’t put yourself first and you don’t advocate for these changes, you’re not going to be as good a mom as you possibly could be. And I feel like that’s the argument that really resonates with people. Like, I will be a better mom if I take this time either for myself or I take this time to advocate for these changes that might not help me. I might be done having kids. I’m done having kids and they’re not going to directly impact me, but they’re going to impact my sister. They’re going to impact my black sister in law. And I think the other thing for me is I’m a white mom. I did not, I have not had the experience in the healthcare system and in every kind of social culture system that my black mom colleagues have had. And we need to partner to bring awareness to this together because maternal mortality is an issue that very much disproportionately affects black women and indigenous populations much more so than white moms and how we come together around this across sociodemographic, cultural and ethnic backgrounds to really advocate together with one voice I think will be a big challenge.

Emily: It is a little bit crazy that we are at the infancy of solving this problem and that for so many years the problem was getting worse and worse. But I feel optimistic that there are really people who are dedicated to figuring this out. It seems like now that we have enough information that the federal government was willing to get involved and start really looking at this problem. It’s like everything that we always say, once you have identified the problem, you really need to study it so that you can understand what the data is and then you can sort of come up with an idea of what this is all about. Only then will you be able to really come up with a solution. And I feel like, you know, different people are tackling this in different ways, but I think there’s been enough awareness raised about it that it’s gonna get better. It has to get better. We all need to advocate for our moms and I, you know, really, I feel strongly that the idea of having a support network that you can talk to if you don’t feel healthy, if you don’t feel happy, if you feel anxious after you’ve had a baby, or most importantly, if you feel like there’s something off with your body demand answers and if somebody isn’t listening to you go somewhere else. And if you’re in a rural area where there isn’t anywhere else to go, call somebody at a major hospital somewhere else and tell them what’s happening to you and get them to call your local hospital. I feel like this is not a joke and it’s really such an important lesson to all of us that you know more about your body then anybody else does when it comes to this kind of stuff. And if you’re, if you’re feeling like you’re in danger, you have to do something about it. So I hope everybody thinks about going to the March for Moms and I’m sure we’ll talk about this issue again. Hopefully next time we’ll have some really great news to share. I’m Emily Kumler and that was Empowered Health. Thanks for joining us. Don’t forget to check out our website at empoweredhealthshow.com for all the show notes, links to everything that was mentioned in the episode, as well as a chance to sign up for our newsletter and get some extra fun tidbits. See you next week.