Episode 6 - Spotlight on AFE Awareness Day with Miranda

Nicole: 0:26

Hello and welcome to today's episode of The Power of MoMMA's Voices, where we'll be sitting down with Miranda Klassen. Miranda is an amniotic fluid embolism, our AFE survivor who founded the AFE Foundation, three months after her recovery from her AFE, she now serves as the executive director of the AFE Foundation. Her passion for AFE awareness continues and her assistance in the development and implementation of the Amniotic Fluid Embolism Registry, which serves the world's largest database of a F E cases. Miranda, thank you so much for being here today. The Power of Norma's Voices podcast was started to help support patients with lived experiences. So would you start off by telling us a little bit about your story and what led you to bringing this greater mission of awareness and support for others that have had an AFE.

Miranda: 1:12

Sure. Well, first, thank you so much for having me, Nicole. I'm so appreciative of all you've done to really lead MoMMA's Voices and give patients a place where they can come and learn more about the maternal health space and do advocacy work and, and share their stories in such meaningful ways. As you already shared, I had an unexpected birth complication during the birth of our son, and this complication is one. that's unpreventable. It's unpredictable and untreatable. It was definitely not on my radar at all. My story, like I think many other stories begins with just wanting to have a family, wanting to have children, and really start that journey and that part of our married life together with my husband my pregnancy. uncomplicated. I had a few small minor bumps along the way, but nothing that would change the course of delivery. And like I said, amniotic fluid embolism wasn't anywhere in the books. I had never heard of it. I had no idea that this could even happen to women during birth. But shortly into my laboring process, I began to share with my nurse that I wasn't feeling right, something felt off. I became increasingly anxious and over the course of a few minutes, went from being able to talk and you know, labor to not being able to catch my breath, and then suddenly had a seizure and went into cardiac arrest. The team quickly recognized these symptoms and took me to the main operating room where I had an emergency c-section and they delivered our son, who was also unresponsive and brought him back, and then shortly after his delivery recognized that I was having a pretty significant hemorrhage. It's different than a postpartum hemorrhage. It's called disseminated intravascular coagulopathy, or DIC. And it's essentially when the blood has used all of its clotting factors and runs out, and so you start to bleed and it's very complex. It's very difficult to treat. So I went from, you know, talking and being excited about birth to having a cardiac arrest requiring CPR. Emergently delivering my son and giving CPR to him and then having a pretty significant bleeding episode that required 20 units of product and was placed in a medically induced coma. I wasn't able to meet my son for a few days, and I remember coming out of that experience and trying to wrap my head around what had happened. That I had actually given birth that my son was okay, and trying to process the words amniotic, fluid embolism. I had never heard of it and I wasn't in medicine, so these were really complex words and I just couldn't grasp what had happened, and I asked a lot of questions after being extubated. and that continued as I was able to go home. Once I went home, you know, this was in 2008 and so Google had just really start, we started to use the word, you know, the term Google it. Facebook had just gotten started and I went home and tried to research on the computer and very little came up. And so I was surprised by that. So fast forward a few months, I decided I wanted to go to the library and see if there was a little bit more in the medical journals that I could find. And what I found there confirmed this was incredibly fatal. We were incredibly lucky and blessed. And that same search in the library, I thought surely if there are women dying in childbirth, there should be an organization that supports that. And I was surprised to find there wasn't the need was so incredibly great and it was sort of there in that library the day before my birthday in July that I thought, this is what I was meant to do and to be a voice for those, who no longer had a voice. And to really help researchers uncover some of the clues around this, because despite it being around for a hundred years There's very little understanding of it and I wanted to change that. Well, thank

Nicole: 5:07

you for sharing. I think that's something too that a lot of folks that have had, you know, birth trauma and complicated deliveries and pregnancies, there's a couple things that we share. And so some of them are, you know, oftentimes there's need for blood products and hemorrhaging and DIC and I had somebody joke with me, they know, oh, that stands for death is certain. And it's just, it, it is common even though it's not out in the world. It's something that, connects many of us in this community. And I know you, you do so much for that. And I know when I first met you, I'd never heard of AFE either. And even though we have had different experiences to find where there's that common ground. And that's really so much of what MoMMA's Voices is about too, is finding those connections in all of us, getting behind them and pushing to make change happen. So what are some other things that, you know, projects that you're working on on the AFE Foundation? I know you're super busy and all over the place. So what are some things that you're excited that you're working on right now?

Miranda: 6:01

Sure. Well the three main initiatives that the foundation has is, Promoting. Education, advancing research and offering support to those who've been impacted by AFE. We've done I think we've done a pretty good job over the last 15 years of really embracing our community and wrapping our virtual arms around them and providing a lot of support and, you know, we can touch upon that if that's of interest later. But really the top two things I think that are gonna move the needle on this is understanding the etiology, the cause of the condition. And that really comes down to research. So when we talk about advancing research, like I said, AFEs been around, it was first described in Brazilian literature in 1926, and here we were, it was 2008, and very little had been you know, understood. Very little had been learned since that point. And so recognizing that we really needed to say, Hey, if I survived and there are other survivors, what could we learn from women who've survived this? Because the women who have been lost to it, you know, they can't necessarily contribute to research anymore. What can we learn from their cases? What can we learn from surviving women and children who've gone through this? And so I reached out to, when I started the organization, reached out to some of the top researchers and, Educators in this space and so grateful to have them. So one of the biggest projects we have is our AFE registry and biorepository. The registry in and of itself is essentially a retrospective review of cases. So if there's any, anyone that's out there that's had either an AFE experience themselves or lost a loved one to AFE, they can submit their case on our website. And what we do is we collect all the medical records. Review those medical records and we're catching 650 data points that we're examining. And then that case gets de-identified and then it, we can send out those data points to researchers to look for commonalities in treatment or age or demographics or perspectives. And so we've amassed the largest registry really in the world and have had 11 publications, which I'm incredibly proud of. In addition to that is our biorepository. The biorepository is something that we know. We can review cases, you know, another a hundred years, and I don't think we'd be able to uncover the etiology or the cause of the condition. The biorepository allows us to take specimens, real-time specimens from women who this is occurring even though it happens very acutely and unexpectedly. The training that we do with our healthcare providers to know that they can contribute to our research by collecting these specimen. when an event is occurring and these specimens can be processed in the hospitals and then sent to our biorepository so that we can share these with researchers who are really diving into what causes this event. It's an allergic like reaction. So we're looking at cytokines and we're looking at metabolomics and, and proteomics. We're really trying to drive in to see if there's any way we could predict which women this will impact. Just to put it in perspective, there's 4 million births a year and one in 40,000 will be complicated with an amniotic fluid embolism. So you're looking at about a hundred women a year that this could potentially happen to with a fatality rate of up to 60, 70%. You're looking at a pretty significant number of women who are passing away from this. So this biorepository, we believe is the next step for really uncovering the crucial information that we need to be able to predict this and to be able to actually treat it. Our healthcare providers are really put in a hard place when you have a woman that goes into cardiac arrest during labor or shortly thereafter, and then has significant, as you said, death is certain. With the bleeding episode. And so really healthcare providers are only left to treat the symptoms they see in front of them. They actually can't and don't know what they can do to treat the actual inciting event, which is probably very similar to an allergic like reaction. So our registry and our biorepository, I think, are two greatest initiatives that we believe will help solve this medical puzzle to couple that with our education. Until we uncover what the cause of AFE is, all we're left with is trying to help clinicians and equipping clinicians to be ready to understand how to recognize early signs and symptoms, and how to treat and manage that patient. Or wrap our arms around those that it's impacted. So our education is something that we've been working very hard on the last 12 months. We have a new online course that we're ready to launch. We've teamed with clinical concepts and obstetrics one of the leading educators in this maternal health space to provide an online on-demand course that will take them sort of soup-to-nuts, everything that you need to know about amniotic fluid embolism. And then the coupling that with, once we give them the knowledge and translate that knowledge, then we wanna give practical application to that knowledge by doing simulation and deliberate practice. And so we are also ready to unveil a very comprehensive and exhaustive simulation toolkit, which is really designed for hospitals from low resource hospitals to very high resource university setting research setting hospitals and to, they can increase fidelity of the simulation as much as they're able. But these two products, if you will, this online course and the simulation toolkit, I believe will be some of the best ways we can effectuate and translate knowledge through those learning styles. Excellent.

Nicole: 11:27

Thank you so much. And one of the things you touched on there too, just the fatality rate is so great and, what that leaves behind it leaves behind, you know, families that are traumatized. It leaves behind families that are grieving. It leaves behind families that have survivor guilt and why did I make it through this? Or why do we make it through this? And someone else didn't. And also has a great impact on the clinicians as well. And I, I know you do such an amazing job. I can't even say taking'em under your wing. Like you take them into your arms and hold them close to your heart and they become your people and your family and you just do an amazing job at that. And I know you're not the only one. You have worked on creating support groups because you know, you can only do so much, but you have to spread that out. So can you tell us a little bit more about the support groups that you guys offer.

Miranda: 12:15

Absolutely. And thank you so much. That's, that means so much to me cuz that really was the inspiration, and I probably should have shared when I was there at the library that day in my search came up an obituary for a woman that looked very similar to me and, both her and her son perished. They were lost the week before I had Van, my son. I will never forget Jenny, and Broden. And they were the inspiration to do this. And so I think very early on, recognizing that families had, you know, a variety of outcomes and we do, we have so many different outcomes that happen as a result of this critical event. So we have, as you shared, families that are grieving a loss of a wife, a daughter, a sibling. We have those grieving, the loss of a child. So you have a woman who's had an experience and survived, but her baby didn't survive. We have women who have required such intense intensive interventions like ECMO, where they have lost limbs as a result of their care on their experience. and you know, then we have women who've gone on and survived and been able to actually, they've had their fertility intact and been able to go on and have another child. And so, you know, it really runs a pretty vast spectrum of the impact. In addition to that, we have to think about those that are providing the care and the immense trauma that they have when they have a patient that goes lifeless in front of their eyes. And sometimes they don't get the outcome that they worked so hard for. So we did, we recognized pretty quickly 15 years ago that we as a community embrace one another despite whatever the outcome is, where we have grievers and survivors that get together and work on, you know, blood drives and initiatives and connect, you know, geographically, but we recognize the distinct perspectives and people needing a space to find their people. And so we do have several ways that we support our, our community. One is through support guides and giving very specific resources and tools for them, but also our support groups. So we have 10 Facebook support groups. So we have those four, you know, grieving families, grieving friends, widowers. We have one for AFE survivors, AFE Survivors with infant loss, AFE survivors that required a hysterectomy. AFE survivors that required an ecmo treatment. We have AFE survivors who wanna go on and have another child, and then we have one for our healthcare providers. So I think that and family of family of survivors as well. And so we really try and initiate conversations that are very specific to that outcome and help them along their journey so that they can find their people. In addition to that, we found that you know, these groups can be large and sometimes it's really hard to maybe find someone that's close to you in either geographic proximity or share as many of the similar perspectives. And so we created a directory as well. Directory has about 25 different data points that it collects, and then we have a mentoring program where we can match people based on similar perspectives that they might be looking to connect with. Then we also recognize that during, especially during Covid, it became really Very clear that we had new AFE survivors that could not get out and get therapeutic services. Didn't have an opportunity to go back to their hospitals and ask questions or give gratitude. Some of the grieving families couldn't have funerals. And so we recognized there was a really unique need during that time. And we started our online Zoom support groups. They're facilitated by clinical social workers who are experts in birth trauma. And so we host these each week for different perspectives in different groups. Where it's an hour where you can meet face-to-face. AFE being so rare, there's not a lot of, you know, any community members in one particular state, let alone a city. And so we really have to function in this virtual space of creating genuine connection through online. And so I'm super grateful that Zoom and, Facebook FaceTime and things like that exist so that we can connect a community that had been isolated for decades. And so support for us is just a real key initiative. It's something that I don't think we could do this work without it simply because it is so devastating and it's not just in that moment of time or a few years later. This is life-long. And even 15 years out from my own experience, I can say that on a regular basis, I continually reflect on what happened to us and our family and what's happened to others. And so yes, we do a lot of things to support our community. They're so very special to us.

Nicole: 16:55

You've done a really good job too of, and you know, one of the things I had found, was going to an infant loss support group. There's so many different reasons that people could be there, but it's very hard sometimes to connect unless you meet with someone that has really had the same experience that you have had and how much being able to connect with others that really understand the shoes that you're walking in. They've worn their own, they've worn them down. There might be on their second pair, but they understand what it's like and they're there as like that mentorship role. It's so important to have that and what a amazing service that you're offering.

Miranda: 17:29

Thank you. It is very validating. I think that's, it comes down to validating your experience and as much as our family and our friends are so supportive of us in these moments, like you said, being able to find someone else who can look you in the eye and say, I get it. I think that's what's special about MoMMA's Voices too, is even if it's not the exact same shared perspective, I think we all have expanded our hearts to recognize that despite the reason for the trauma, the trauma is real. And you know, we don't do a good job in this country and, and probably abroad of recognizing the, the trauma that can occur in the birth setting, in pregnancy setting.

Nicole: 18:11

A hundred percent. We find those commonalities. Mm-hmm. what are some things, and we talk about, you know, several different things, but let's, let's kind of talk about some positive shifts, some good things, and successes and wins we see happening for something that can be so terrible.

Miranda: 18:27

Oh yeah. I think, you know, I, I think some of the biggest wins we've had have been having a space where families can go and have hope. We often talk about being a light to others, and I can't think of anything more devastating than this tragic event happening and then turning around and finding that there was nobody there that was trying to work on your behalf. And so I think what I have seen, especially after the experience of Covid, our community is so tight. So I think the greatest achievement I have seen is being able to see families in their darkest, darkest days and their moments. And then being able to see, nobody's ever like healed from this, but they learn how to walk that path. And for them to be able to smile again is probably my greatest joy. And, and hoping that we played a tiny little role in that in helping them have resilience and giving them hope. I think as someone who was, I just wanted to be a mom. I just wanted to be a mom, and here I have an organization. I have an expansive family that spans the globe of families that we care deeply, deeply about and have very rich relationships with. And then I think the fact that, you know, we've had this opportunity to publish papers about our experiences and that we've put AFE on the map. We have basically taken a a horrible complication that nobody knew anything about and said, Nope, you need to know about this. This is why it's important. This is why you need, need to be prepared. So the success I hear is when I hear of healthcare providers calling us in the middle of a code and saying, we know that you can help. Hearing back from healthcare providers that say this resource was so helpful to our team and we think that it helps us save this patient's life. To hear families, to see women who, you know, who survived, go on and have another child. I mean, that, those are the moments when I know all the blood, sweat, and tears have been worth it. So I think the success has been one that we're still here 15 years later, because I'll be very honest, this is not a household name. And even though there's 4 million births a year, and this only happens to a hundred, we don't know who this a hundred will be. So it could be any of those 4 million people giving birth. And I think that's what's challenging is that from a donation standpoint, we're not getting a lot of donations that come from the general public. We're getting donations from our community. And it's because hopefully our community sees our value and sees what we've been able to do over the last 15 years. And I'm, I am proud of it. We still have a lot of work to go. And so I think that we've, that we're still around is probably our greatest success, that we can continue to work on this important and really needed, needed project. We need to end AFE.

Nicole: 21:18

A hundred percent. So true. So what are some ways that people can get involved, aside from donating and making a contribution financially, what are some other ways that people can get involved with the AFE Foundation?

Miranda: 21:30

Sure. I'm so glad you asked, because it really isn't just about donations and engagement, but it's really about providing a place where anybody who's been impacted by AFE can find meaning and and do meaningful work with their experience. That's one of the things I love so much about MoMMA's Voices as we've shared. Not only is it a great place for us as organizations to meet with other organizational leaders and get best practices, but it's really a hub for us to be able to send our community members to to learn the landscape of maternal health. It's really complex. It's more than just your OB/GYN and your nurses. It goes beyond that. It goes to hospital organizations, it goes to stakeholders in your state that are making decisions. It goes to governmental agencies that are, working on legislation that impact us. And so one of the challenges that we had in our community is how, outside of just telling a really sad story. What other ways can they share their story that's effective, that effectuates change? Because I don't think we just need to hear sad stories. I think we actually need to be participatory and contribute, and I think that's what MoMMA's Voices does a good job with the PFP training is that we can send our community and, and that's really a good gauge for us too, because a lot of people say, Hey, I wanna do something. And it's a really good step to say. Check out this training. This training does so many things. I love that it does a quick assessment to assure that the person's ready. Sometimes we as moms who've survived something like we're quick to take action, right? We wanna jump in headfirst and we maybe haven't processed everything that just happened. So that's what I love about the PFP training, is it does this assessment to make sure that you are actually ready for this. And then in addition to that, it helps translate the alphabet soup of who all these players are in the maternal health space. And then after that, it helps you refine your story and it helps you identify ways that you actually can go out and participate. And then what I love about MoMMA's Voices is, is that if there's not a place for us at the AFE Foundation to utilize a patient or provide, you know, a patient family partner, but there are other opportunities in their state that they can go out and share their story and increase awareness in that way. So for us MoMMA's Voices and the PFP training is probably the best way to get in to get started and identify where you can use your talents to the best and most meaningful way. Well, thank you

Nicole: 23:59

so much for that plug. We we take great pride in being able to help people through their healing journey. And like you said, it's not that you ever become healed, but it is a journey and people that have come through it and said how much it has really helped them to recognize that they needed more healing. And we wanna make sure that too, if someone's not ready, that is a-okay, we want you to get what you need and not trying to put you into a situation that will end up hurting you more in the long run.

Miranda: 24:27

I always ask are we hoping or are we hurting? Right?

Nicole: 24:31

So I have one last question to ask you, and this is no mistake. We did this totally on purpose on having this, this podcast coming out because right around the corner is AFE Awareness day, and I know this is such a special day of the year, and again, you work around the clock this day with your community that you really honor and recognize and gain that awareness about AFE. What do you have planned for this year?

Miranda: 24:57

Ah, this year is special. You know, as we sort of come across and celebrate 15 years AFE Awareness day really started with one dad, and it was one dad who years before my own experience lost his beloved wife. And he lit a candle on the one year anniversary of her passing. And he shared this in a small community, a Yahoo Group community. And I remember joining that Yahoo group shortly after my own experience. And I remember on that March 27th that people from or really around the globe were lighting candles. And I remember asking and saying, well, how did this begin? And they said, oh, it was a dad. And he started this. But I never knew the dad's story, the dad's name, nothing. And so a few years ago we well, let me back up. So when I started the organization and I recognized that this was something that had happened prior to the beginning of our organization, I thought, you know what? I wanna honor that experience. It's a beautiful way to remember those whose lives have been lost, but also encompass those whose lives have been impacted as well and really honor that time. And so we decided that March 27th, that started with this, dad would become AFE awareness day. And over the years it's grown from you know buying a t-shirt and, and wearing your t-shirt that day to sharing your story to actionable items like, you know, downloading and, and sharing some of our education or sharing on social media. We've had a lot of people start blood drives on these days, and so it's really just grown over the years. But I remember a few years ago we started to do a virtual candlelight vigil. So we weren't just asking our community to light candles, we were then simulcasting a live candlelight vigil. And each year it's grown and it's one of the most touching experiences to, to do it. And we, we kept it at the exact same time at nine 15 Eastern when this dad started to light his candle so many years ago. And to watch as people from all over the world tune in and say where they are, where they're located, and how they're connected to our cause. It's, it's really touching. And so this year we'll be doing the same where we'll be having our live candlelight vigil this year. I'm excited. We have a guest cellist who will be playing live music as well. And, I remember a few years ago my phone rang after one of these live simulcast candlelight vigils. I was sort of surprised cuz it was late in the evening and I picked up the phone and it was, It was Danny. It was Danny Bell, he was the dad. It, it was his daughter's 16th birthday. And he you know, had tucked her in that night and he thought, gosh, I wonder if anything has changed about AFE since I last looked 15 years before. He had sort of stepped away and he just wanted to know. Have they learned anything? Have they figured it out? And he stumbled across our website. He stumbled across our social media feed, and he was calling, I don't think he was expecting anybody to answer the phone. He wanted to know why was it really AFE awareness date and why on March 27th? And so when I picked up the phone and he asked, can I ask why it's today? And I said, it's because a dad started this many years ago. I don't know him. But we wanted to honor his experience and the phone got really quiet and he told me it was him. And after that moment we've built a special bond and I've actually flown out to see him in Cape Cod where he, he lives. And you know, we talk every year. And so AFE Awareness day is, is really about him. It's it's really about one dad who started something and we embraced it and carried it throughout. So AFE Awareness day is a special day for us, and we will never change that day. We will never change the time we do our candlelight vigil. But it really has morphed and it's really a day for everyone to many of those in our community, especially AFE survivors use this as their day to process. They use it as their day to acknowledge what's happened to them so that they can save the day of a birth of a child as a special day, as a celebratory day and it's especially, you know, somber for those who've lost a child on that day as well. And so I think it, it really just embraces everyone. It really connects everyone that's, it's, it's been impacted by, so it is a long day. We've done so many different things over the years. But it's, it's special and it's something that our community has embraced as well. And I'm so, so glad that Danny and his family can honor their Lisa in such an expansive way. I

Nicole: 29:31

never heard that story from you before, but that's amazing to hear and how small the world can become sometimes. Now, where will the candlelight vigil be this year? Is it on Facebook? Where's it gonna be?

Miranda: 29:40

Streaming? Yep. Facebook Live. So you just go to our Facebook page and we invite all of our community and, and our MoMMA's Voices community and partners in this space to join in if, if they've lost loved ones. It's, it's a candlelight vigil. It's not just for AFE. It's, it's really for us to all acknowledge our experiences. I'm very careful about this year.

Nicole: 29:59

So that will be March 27th at 9:15 PM Eastern on the AFE Foundation's Facebook page. They will be having that. So make sure to tune in. It is always something special to be able to witness and participate in. Yes. Thank you Nicole. We hope this has been a helpful episode of our Power of MoMMA's Voices podcast to get to know organizational leader at Miranda Klassen at the AFE Foundation. Remember, we'll be putting on an episode every other week and we'll rotate between patient stories, other organization highlights and engagement success stories. This podcast is available wherever you get your podcast or on our website@mamasvoices.org slash podcast.