Black Maternal Health Week: Stories of Survival

Speaker 1: 0:09

Welcome everyone to Beyond Clinical Walls. It's Dr BCW and I am so excited to introduce my next guest. Her name is Marian Dancy and she's from Columbus, ohio, and her story, her work and her advocacy is such a powerful story to share and I'm so grateful to have her on Beyond Clinical Walls. So let's start with her story and why she has decided to provide advocacy and life to a situation that is happening to Black women across the world. First, I just want to say welcome, marianne, to Beyond Clinical Walls. I would love for the listeners to hear a little bit more about you. Of course, I'm going to sprinkle in all of the amazing accolades and the work that you're doing, but welcome to Beyond Clinical Walls.

Speaker 2: 1:00

Thank you so much. So I am from Columbus, ohio, and when I was about 35 years old I started experiencing symptoms, I got really sick and I didn't know what was going on with myself. But as a busy career woman and a hats and sometimes prioritize our health, last I got into the situation where I had to see multiple doctors to get an answer and get a diagnosis. What is going on with your body? You must advocate for yourself, speak up for yourself, have the conversations with physicians. Even if you're feeling dismissed or not heard, there's someone else that will listen to you and keep going.

Speaker 1: 1:57

Me going on and finding someone who would listen, saved my life and that's what I want to talk about your story, how it saved your life, your experience, and how you are putting it forward For everyone listening right now. This week is Black Maternal Health Week and we are highlighting an issue that is really vital to anybody beyond just Black Maternal Health Week. So we are going to highlight this, but we are going to really shine a light on all of the pieces that are a part of this issue by really talking about why does this continue to happen, highlight those stories and highlight what's happening right now to combat it and to reduce this ongoing high rate of Black women dying during pregnancy or shortly thereafter. Marian was so kind to join the show to talk about her story. I'm going to share a little bit, but then I'm going to have her really put life into what she experienced, as she mentioned dismissal, all of the things that are happening to people across the world, but at the highest rate right now, as we know, to Black women during pregnancy, in a system that is quite robust with technology and so forth. We have to continue to think about why this keeps happening and think about why we haven't really put an investment, a true investment, into stopping it.

Speaker 1: 3:24

Marianne, you gave birth to three healthy children without complications prior in 2019. And you were getting ready to deliver your fourth child and you noticed that you had been experiencing fatigue and swelling in your lower extremities, in your legs, and just overall aches and pains. And as this was happening, you're thinking am I tired? All the things that I think. A lot of women we think because we are moving at a fast pace and we got a lot going on, and one piece that happened to you was you started to lose your vision, and when that part happened, it was another piece of what is happening to me, and so I wanted to start that piece because it's beyond. People think oh, it's during pregnancy, oh, it's during delivery, it's all of those areas and it's also after delivery. So please share with the listeners your story.

Speaker 2: 4:22

Yes, so my condition, or the symptoms for my condition, started six and a half months after I gave birth. So at that time I had removed myself from even being postpartum, right. My baby had hit many milestones and it didn't feel like I would still be dealing with something that was related to my pregnancy. So when I felt the fatigue and I got the intermittent swelling, it's like, oh okay, I'm busy, I'm a busy mother, I have a career. That's that's why I need rest, I need a vacation. And so for me, I kind of toned down those symptoms like, okay, I just need to take a break when I have time, right, and I didn't make time in the beginning. And then I did lose my vision. It was a brief loss of vision at work, and that's what prompted my first visit to the doctor. I knew at that point, okay, this is not normal. Okay, the swelling, the fatigue, okay maybe, but the loss of vision was very concerning to me. So I did contact a physician and went to the appointment and unfortunately, at that appointment I didn't get any answers. So, you know, I had to keep going.

Speaker 2: 5:34

My symptoms became more severe. I didn't, I just kept on with life. I had children to take care of. You know, a house to manage, a job to go to. I didn't have time to be sick. I didn't allow myself time to feel bad about it as I went on and I couldn't take the symptoms anymore.

Speaker 2: 5:51

When it got really, really bad, I made another appointment to a different physician just to see. Okay, I didn't get answers at the first appointment. Let's see if someone else can look at this and provide more insight. That didn't happen. I heard that you know, you're young, you're healthy, no prior medical history. I had never been sick before. So for me, you know not necessarily being educated that what I was experiencing was symptoms that were showing up as heart failure, not knowing that at the time it's like, okay, well, nothing's wrong, maybe, but I don't feel right and I think that, being a healthy, a typically healthy woman, you know when your body's off. And I knew that I didn't feel right and I didn't feel comfortable with not having an answer. So I kept going and I had to take myself to the emergency room.

Speaker 2: 6:45

At the emergency room, by that time my symptoms were so severe that I had labored walking, breathing, I couldn't lay down flat. Now, these are pretty extreme, right, but still, as a busy mother, as a busy career woman, I kept pushing through. I didn't take a sick day. I was going to work, still feeling inadequate, and I didn't really know what to do. But I got to the ER, few tests were ran and I got a misdiagnosis. I got a misdiagnosis and once I started treating myself for the pneumonia that I thought I had, I was down bad after that.

Speaker 2: 7:23

After that, I couldn't do anything. I couldn't take anything, I couldn't take care of my family, I couldn't take care of myself, and I was afraid. I was very afraid, and I finally took that sick day, said okay, I need to figure this out now. I took the sick day and solicited a fourth position, a different, totally different position. Said, okay, I need a fresh set of eyes. Each time. I just knew I needed a fresh set of eyes because I'm not getting any answers. Well, I'm not getting the right answer because the treatment that I was putting myself under for the pneumonia was not working. It wasn't helping at all.

Speaker 2: 7:54

So I made that final, fourth and final appointment with a new physician that I got from a referral on the back of my insurance card. It was a week of Thanksgiving 2019. And I made it to that appointment, barely just barely. I couldn't hardly walk, breathe, and I sat in the room waiting for the nurse and she immediately picked up like okay, something is not right here. She ran an EKG and did some other tests and she rushed out of the room and got the physician right away. And the physician came in, reviewed everything and said hey, I don't mean to scare you, marianne, but I think I'm seeing a case of heart failure.

Speaker 2: 8:34

So, hearing the words heart failure in your 30s, you know, not knowing why, you know I would be experienced in heart failure. I just I was afraid. You know, I didn't know if that meant like, okay, am I dying? Am I going to make it through this? What does that mean? I have to pick up my kids from school. You know what's going on. I you know I don't know how I should navigate from this point forward. But After that I was admitted to the hospital and then that's when they diagnosed me officially with postpartum cardiomyopathy. So my pregnancy caused a weakening in my heart which led me to heart failure.

Speaker 1: 9:14

You know, just sharing your story and hearing, you have to go through four physicians to get an answer and not even get an answer because then dragging yourself to the emergency room to get help after you had sought out care with four other clinicians and been misdiagnosed, not heard, not listened to. Because when I hear those symptoms, marianne, in my mind I'm like, oh yes, that could be heart failure and, yes, it could be other things as well, but it is also a part of that differential diagnosis and so for people to think about the fact that your diagnosis of heart failure can be connected to pregnancy, it can also be connected to just sheer symptoms, that can really be a variety of different things, and so to couple those two things together, it's really important that, as a patient and just anyone, to be able to arm yourself with that information and continue to seek out care when you are not heard and when you are not listened to. And this point of just being dismissed, as you and I talked about, is near and dear to my heart, because you almost lost your life, even though you were out trying to save your life and find out what was happening. Why can't I do? The things that I love to do is getting my kids, managing my household, all of those things.

Speaker 1: 10:47

And so this is such an important conversation and I hope anyone that's listening to take a step back, whether you're a patient or a clinician, and really invest in looking at that person individually or looking at yourself individually, and do not allow anyone to say, oh, that's fine, you just those are normal symptoms.

Speaker 1: 11:07

Keep seeking out that care because, to your point, it can save your life. And one part that is important we talk about with Black Maternal Health Week. We talk about pregnancy and dying during or after, and I alluded to this earlier. This risk of heart disease is it can happen if you've had any risk factors before pregnancy, and often we think about when we get pregnant and let me know, marian, if this was something that you did as well. We want to be healthy during our pregnancy. We're doing everything to be healthy, but if you are not aware or don't know about any health conditions prior to your pregnancy, without knowing that, you don't know the risk that you could carry forward, not only during your pregnancy but after your pregnancy, would you like to talk a little bit about that?

Speaker 2: 12:02

Absolutely. I think that we're used to, we're so excited, you know, getting that news about having a bundle of joy. Right, we take the best care of ourselves in that time and we make sure that we eat right and we get rest and it's not really talked about. I mean, I think these conversations just don't happen necessarily that. Okay, postpartum care is important. Right, you have to keep yourself healthy during the pregnancy. Yes, postpartum care is just as important. The mother has to take care of herself while you're caring for another.

Speaker 2: 12:35

You know, and I think that specifically for Black women, as a Black woman, pain shows up differently for us and we show pain differently and we carry, maybe, weight that some others may not and that shows up in our life very differently.

Speaker 2: 12:51

And I think that that was something that contributed to my waiting first to seek out help and also not really getting the answers, because when I went to the physician the first and second time, honestly I was keeping my composure, I didn't come there showing my pain, and I think that it's important to have not only the conversations of education like, hey, you have to take care of yourself and care for yourself is important throughout this whole process, but also you have to build a rapport and allow your patients being culturally sensitive and being able to connect with them and have that rapport, so they're vulnerable and tell you exactly how they're feeling. I was in a rapport style in my first appointment like, hey, these are my symptoms, what does that mean? And that was partially because I wasn't able to be vulnerable in that space and I wasn't educated about what my risk factors were. So it's kind of twofold. I think that is important on both ends to take care of.

Speaker 1: 13:50

I agree, you know, and we're all different flavors, we're all of different makeups and I like to say intersectionalities, and so when you have that as a clinician, you know the onus is on us to be able to respond to that. So I take responsibility in those pieces because we're supposed to be able to respond to that. So I take responsibility in those pieces because we're supposed to be able to take in different personalities, different things, and really take in what is that person sharing with me? Am I listening to what they're telling me? And is the differential diagnosis meaning the different diagnosis that I have in the back of my head, based on what my patient is telling me, does it really fit all of those? Have I really thought about all areas that it could fit, or am I kind of just basing it on the way this person looks, their gender, all of those different biases that we all have? But it's about checking those biases and thinking about, hmm, I need to go a little bit further, I need to figure out what's going on. And so I thank you for highlighting this important topic.

Speaker 1: 14:54

And so anyone listening, whether you are pregnant, not pregnant, you have a family member, anyone sharing the story, because when you do that. It allows someone to think about whether before they're pregnant, during they're pregnant or after that. These symptoms aren't just what you should have to deal with or aren't just a part of your everyday life. You need to have someone take a look because that symptom, if you dismiss it, it could actually cost your life, and if someone else dismisses it when you're seeking care, the same part. So I just want to thank you for sharing your story and part of that sharing your story as I pause, you're saving a life. So every time you do this, marianne, it is a gift that you are putting forward for others to know.

Speaker 1: 15:46

And there was something that you said putting forward for others to know. And there was something that you said when we spoke feeling not educated. Well, now you are educating the world by helping people know more so they can help themselves, and that's what this is all about. So I am excited to continue this conversation we talked about this will not just live in Black Maternal Health Week. This conversation should be ongoing. So I am so excited to have you back on Beyond Clinical Walls. We're going to talk more about this and continue to highlight this important work. Can you please share with the listeners how they can connect with you.

Speaker 2: 16:35

Can you please share with the listeners how they can connect with you, doctor, because I think that you know these conversations are so important and I just thank you for the work that you do. I am excited and honored because our testimonies are not just for ourselves. So I'm honored to share with other women because this is completely avoidable. You know it is, it is and that's what people need to know. So, despite your age or how you're caring for yourself, you can start today and have these conversations. Work on your care right, taking care of yourself, knowing that you matter, right. You have to be able to show up for not only the roles that you fulfill, but for yourself to show up for not only the roles that you fulfill, but for yourself Absolutely.

Speaker 1: 17:32

And one thing that I always say and I noticed when you and I connected and I was able to learn about your work we have the same motto when I say your health is your most prized possession and I remember you referencing that too and you can have all the successes in the world, you can have the greatest friends and you can have the cleanest house, you can have all of those things, but without your health, you are not able to do the things that you love and carry on, and so keeping that at the forefront, as you mentioned, is so important.

Speaker 1: 18:03

So I'm excited to continue this conversation and I thank you for taking the time to join Beyond Clinical Walls. I am so excited to introduce my next guest who is a advocate. She is someone who has taken the position to share her story of how she almost lost her life and put it forward to help others. My next guest is Leslie Jordan, who is a fantastic woman mother advocate in so many different ways, and this week, as we know, is Black Maternal Health Week, and she has graciously joined the show to share her story in hopes of raising awareness and also putting a new perspective, shedding light on this ongoing issue and really providing answers, but also awareness, through her story. So, leslie, welcome to Beyond Clinical Walls. Thank you for joining me.

Speaker 3: 19:15

Thank you so much. I'm so happy to be here, dr BCW, on your podcast and, most importantly, during Black Maternal Health Week, where I'm just absolutely inspired by your story alone that you shared on Do no Harm, with your TED Talk, which I know is expiring millions and definitely pushing the needle forward to help spread awareness about maternal health, especially dealing with Black women when it comes to maternal health. So I am just honored to be here and take up space with you and thank you so much for having me Well.

Speaker 1: 19:50

I am so grateful just to be in that space with you, so this gratitude and just sheer admiration and advocacy and love is felt on both ends. So I just want to share that. I want listeners to really hear about you, know about your story, and it's important that I package it in a way that is intentional. You know what happened to you. We can't just say it's just a story, because it's your life, and so the fact that you are willing to share this story and allow people to learn from it in hopes that this doesn't happen to them or a family member, is a gift, and a gift that you are giving forward every time you share your story, and so, with that lead, I would love for you to share you know what transpired.

Speaker 1: 20:41

I will start. You know the story with. You had just delivered your child and you knew you were feeling some symptoms that often a lot of us really just associate with giving birth and feeling tired and other things. But as you got a headache and other pieces, that story changed. Those symptoms started to get worse, and so I would love for the listeners to hear your birth story.

Speaker 3: 21:07

Yes, thank you for allowing me to share my story, and I guess I definitely will kind of start a little bit before everything took place. After delivering my child. 48 hours after delivering my child, I experienced what I now know is called a thernoclep headache. And the intensity of this headache grew worse and worse until the pain was just so heavy where I lost sense of gravity. I had to get help. Going to the bathroom, getting up, like my neck muscles felt like they gave out on me. I didn't have any sense of weight at all and the pain just kept elevating and elevating and I knew something was wrong. I was speaking up, I was speaking out. I was saying you know, I'm in pain, I don't feel well. I knew I just delivered, but I just felt like, okay, if this is a headache, it should get better, especially with the medications that were given to me as I was expressing, you know your level of pain, from zero to 10. And you know you have the frowny face and then you have the happy face and I'm like it's beyond a 10. It's not even on the scale, like it's just the worst thing ever. And I know I'm the kind of person where I love to try to make things better. I try to look on the good side of things and just try to be positive as much as I can. It's just ingrained in how I grew up and who I am as a person, and so pain for me might be a smell Like I could be smiling and cheering and feel absolutely the worst in the world, in my opinion. So I like to call her an angel.

Speaker 3: 22:41

She's a nurse. She came in almost at the 48th hour and she went through my chart. She went through all the medication. She listened to my symptoms, asked me all of the questions taking my vital. She listened to my symptoms, asked me all of the questions taking my vital and then, when she got to the actual medication portion, she was like wait, you took this, that and this and you're still saying your pain is a 10 or beyond a 10?. She was like wait, and so I'm so weak at this point I can barely lift my head. I'm really like I just feel like I'm so exhausted and out of it she runs into the hallway. I hear yelling, I hear profanities, I hear rustling and then the next thing I know a neurologist runs into the room with the nurse, and at this point I can hear my speech slurring. I can feel this rapid intensity of pain like fire all of my body, like literally I am burning up inside, and I just yelled as loud as I could and looked directly into Neural's eyes. I said I am having a stroke and I just remember his eyes getting so big like what, and from there I just I think I like to say I said a little prayer and I blacked out.

Speaker 3: 23:49

From that moment when I came to and had some sense of consciousness. I probably was in the ICU at that point and I was paralyzed. I didn't recollect anything that really transpired from the point I blacked out to the point where I came to consciousness. So at this point my husband is my advocate, my mother is my advocate. You know my, my sisters, like my family, my dad, like everybody's rallying around me and fighting and working with the medical staff and making sure that there's not too much or too little being done to try to give me a fighting chance to survive, because what happened to me there was no baseline.

Speaker 3: 24:28

Because of what happened to me, I did save two other black women that were in the hospital that day and that's because another nurse shared that with me without giving out their you know confidential information, because I was just so out of it to the point where that was just like my grain of hope, like why this is happening to me and it was to help save other people's lives, and so, long story short, I spent several weeks in the hospital, going through every therapy you can imagine, from speech therapy to physical therapy, to looking and trying to just get a sense of movement again, because I believe my left side came back first and then, as my left side came back and then my right side was still kind of like paralyzed and floating in the air and I really had to fight to get in the move together and get my balance back. And the whole time I'm like I didn't realize I had delivered my child until they brought my child to me in a incubator box because they were worried about him getting infection in ICU. And from that point I was just like, oh my gosh, it's my baby, it's you, and I was just holding my baby and I actually have a photo. I don't know who took the photo. I'm so glad they did because in my mind I look normal. I didn't have all this stuff on my head, I didn't have all these wires on my head. I knew I couldn't move, but they positioned me so I could at least hold my son. And everybody in the room was just crying and I'm like why is everybody crying and looking at me like this? I'm just holding my son, like what's the big deal? And now I realize like it was not an easy task, like it wasn't something that was ideal.

Speaker 3: 26:09

When you think about pregnancy and going into the hospital, especially when, prior to pregnancy, I mean I took my prenatal care so serious, like beyond my normal healthy habits. I mean I knew there were risks being a black woman. I knew having an advanced degree didn't matter. I knew having a social economic status didn't matter. I knew that when I walked in there they just saw a Black woman and in most cases I was mistaken for a woman that wasn't married, didn't have any support, and so it was almost like the bias was kind of a little prevalent when certain nurses would see that I had family supporting me and friends coming to see me and it was almost like something new to them, like, oh, you do this, like this is something that is presented to you. You know, in most cases I took the high road. I would speak up because it was a balance. You had amazing nurses and medical staff, and then you had those where it's just like, okay, we're going to get through this moment and hope for the best outcome, and so it was just a mix of the two and I think at this point I'm about roughly five years into recovery. So what you see right now is a walking miracle.

Speaker 3: 27:20

I still do rehab, I still have a lot of issues, I still smile through pain. I mean I've learned how to do pain management with my rehab and start to incorporate exercising really big about hormones and diet and medications and and how to take certain teas and heal from my trauma. Because that stress. I cannot afford to carry that stress with me anymore. Like before I was a type a practicing attorney and I was also carrying a child and I was also trying to support family and just do so many things and wear so many hats because it was normal to me like that's what I am to do as a black woman. I am to take care of everyone and then do the things that make me feel good, without realizing it's not just enough to look good.

Speaker 3: 28:09

You also have to take care of yourself to actually be good, and that starts with healing trauma. It starts with reframing your thoughts and realizing that there's no such thing as selfish when it comes to taking care of yourself, because I went to a place where I had no choice but to depend on people to help me. It wasn't an option for someone else to come in and help me, like literally from bathing to using the restroom, from eating, like anything you can imagine. I had to have assistance with that. And even now, like my husband, still has to do a few things for me, because one minute I'm great and the next minute is like OK, I'm in the bed, I'm not so well, and so we're still working through that balance and just trying to get to the point where I can find even more independence and more autonomy over how I live and, most importantly, just being a mother to my now six-year-old son.

Speaker 1: 29:03

One piece that you shared. It's not just the physical kind of rehabilitation, it's the mental rehabilitation that you are balancing on all ends and that can be so difficult to really be able to invest in all of those areas. But it's important because they all make up you and so you can get to where you are able to do that independence in a way that you want to, whether it's being a mom, an attorney, all of those things, and so that's a powerful piece to add to this. When we talk about these events that happen in our lives, that it is not just one and done, it is ongoing. And I love also how you spoke to the bias piece in healthcare, where not only are you trying to fight for your life and heal, you're also having to do, as you mentioned, this delicate dance of how do I get along with those who are supposed to be helping me in my life to get better, make them understand that I should have the best care, and so I think all of the pieces, leslie, that you just put forward really highlights so many different areas. When we talk about a crisis in health and then when we talk about what's happening to Black women, it's more than just one lane. It's so many different areas, and I am so grateful to have had you on Beyond Clinical Walls and for you to share your story, and not just your story, but all of those pieces that are a part of it and that are ongoing.

Speaker 1: 30:38

And so I said this at the beginning of the show I'm going, let's keep this conversation going, let's highlight all of those things that even happened during the pregnancy, before the pregnancy, what is preeclampsia?

Speaker 1: 30:52

All of those things we are going to highlight, because I am a big believer, as you are. The more you know, the more definitions, the more information you have, the better you can arm yourself and be able to advocate, because the healthcare system is going to always have bias, it's always going to have racial pieces to it. But what we can do for ourselves is have as much information as possible to combat it and to stand up for ourselves. And by you sharing that story, you're allowing other women to stand up for themselves and know that when they have, if they have these symptoms no, this isn't normal, and if I have to yell, I'm having a stroke you yell it. You yell whatever you need to do to get that help. So, for those who are listening. How can people contact you to have so you can share your story or just be able to kind of advocate, or or have you know the opportunities to collaborate, to kind of?

Speaker 3: 31:53

advocate or have the opportunities to collaborate. Thank you, yes. So if you are interested in actually finding out about my story, I did have the pleasure and still do. I had a pleasure being a part of the American Heart Association, go Red for Women Real Women, class Survivors 2023. So if you go to goredforwomenorg and type in Leslielie l-e-s-l-i-e, jordan, you'll find my birth and story, more information about my story.

Speaker 3: 32:21

And if you're looking for more in-depth interview and personally, when, when god moves me and I can, I do post on instagram at um, amazing is love, so you're welcome to find me there. I try to just share my story. I try to share things that move through me in hopes to just inspire anyone that just been through a lot of trauma and something that's life altering and all I can say is just remember when you go through things, remember it happened to you, but it didn't happen of you, and what that means is sometimes things just happen. That doesn't mean you're a bad person, that doesn't mean you deserve it, but because they happen, we're going to choose, to make choices, going forward so we can be the best person that we can be.

Speaker 1: 33:06

I love that and you know that message will resonate with so many different people and it's also something that they can hold on to. I encourage everyone who just heard what she said to hold on to that. Keep that in your pocket, because you never know when you're going to need those words to come at the forefront and help reset your mindset, reset you physically as well. So that is just a powerful message. Well, as always, I end the show with a level of gratitude. I want to thank everyone who took the time to listen and hear Leslie's story and join Beyond Clinical Walls. This is Dr BCW. Thank you for listening.