Episode 1 - Why we are here

Hi, my name is Nicole Purnell and I am the program director for MoMMA's Voices. I have a lived experience with preeclampsia help and infant loss, and I really got started as a volunteer with the Preeclampsia Foundation. Shortly after the loss of my son and just worked with them and, and raised funds and raised awareness and talked with people. And my passion was to help people to walk through that pain and walk through that dark side and to see that they can find purpose in what their experience was. And it just so happened that about the time I was pulling my hair out with my corporate job, I just. Threw it out there like, Hey, if you'll have anything that you're hiring for keep me in mind. And just so happened that they had just got funding to start the coalition as it was in the very early days, and were ready to bring on a project manager for that. So I was lucky and the timing all worked out that I started on staff at the Preeclampsia Foundation back in October of 2018 as a program manager for MoMMA's Voices and MoMMA's Voices really started with this idea and this thought that there are a lot of small organizations that are out there and we all have a place and a voice, and not everybody's getting seats at the table. And so how can we come together and bring all of these voices, all of the organizations, All of the people that need to be heard and, and have a place how can we elevate them and amplify them and find those seats and working together, unify our voices to be even more powerful and more heard. And so that's really how MoMMA's Voices got started, is just looking at how we can work together and help everybody in the same or different circumstances, but where we can find those universal threads and where we can all come together and join to have more.

My name is Bekah Bischoff. I'm a two-time pre-eclampsia survivor and developed help syndrome with my second child, nearly dying in delivery in 2012. In 2016, so four years later, I submitted my story to an investigative reporter who was trying to figure out women who had had pregnancy complications and wanted to share their story, and I submitted it and I thought, I'm never gonna get a call back. I thought I survived. My baby survived. I don't have a story. And then I learned that I did have this really powerful story. I was able to be a part of U S usa, today's Deadly Delivery series that finally aired back in 2018. And I got involved in policy work. I learned that this was not rare at all, and that. Were dying or nearly dying at alarming rates. I was also able to identify and heal that I had suffered in silence from postpartum anxiety and depression after experiencing this traumatic birth experience that I never talked about. And I got to thinking if I have this powerful story that I didn't even think I had and had to suffer in silence all these years, there have to be so many other women who are just like me. And so I got involved in anything that I could be a part of and finally found my way. To MoMMA's Voices. Met Nicole in 2018 at the launch of the MoMMA's Voices Coalition and just continued to stay involved and do anything that I could. And after spending over a decade as a kindergarten teacher, I was able to transition to working here as the education and development Coordinator. And it's so beautiful to see how some of the. Pains that we all carry and experience can turn into such beauty if we allow it, and I'm just so happy to be a part of such an amazing team.

Hello, my name is Emily Taylor. I experienced an amniotic fluid embolism after my water broke. During the pregnancy of my first child, my daughter and I had a near death experience on what was supposed to be the happiest day of our lives. I coded for two minutes and had multiple organ failure. When I woke up in the ICU four days later, I was grateful to be alive, but couldn't stop asking the question, why did this happen to me? I had extreme mom guilt after putting my child through such trauma. I couldn't breastfeed and I couldn't even hold her when we got. This led me to reach out to the AFE Foundation and find out as much as I could about this condition. I decided to advocate for other mothers who went through an AFE and other women who didn't experience the birth they had hoped for. I was introduced to MoMMA's Voices, patient, family partner training, and it really changed my life. I was able to heal, become empowered, and find ways to get. I currently work on engagements through a matchmaking process with providers and patients, and outreach with other organizations. I was in the patient engagement realm before coming to MoMMA's Voices, so it's always been my passion and I'm really excited to be able to do it with mothers going through a traumatic experience. I'm so excited to be here with you all.

Hi everyone. I'm Mandy Gross. I'm a patient family partner and the administrative coordinator for MoMMA's Voices. Nine years ago after the birth of my daughter, I woke up with the worst headache I'd ever felt. We rushed to a standalone er where I stayed in pain and undiagnosed for hours while they ran tests. Diagnos diagnostic tests before I was transferred via ambulance to the full service hospital to actually get a diagnosis. My doctors did not have privileges at that hospital. I didn't know anyone there. They finally diagnosed me with postpartum preeclampsia. I ended up staying in that hospital on a magnesium drip. Was subsequently released with no medication, only to be readmitted 24 hours later, and they repeated the course of treatment and then I was discharged with medication. This whole incident created PTSD, postpartum depression, anxiety, OCD. Lots of different maternal mental health issues that I was completely unaware of until I found mama's Voices and the preeclampsia Foundation. I got into the advocacy when I saw a Preeclampsia Foundation and MoMMA's Voices webinar, and it made me feel like that was truly my calling. I became a PFP. And later joined the MoMMA's Voices team and it's changed my life. And while I'm not happy that any of us have had maternal health problems and issues, I feel blessed to be part of this community of incredible, strong and supportive people, and to be able to use my story to help others.

And now that you have met all of the members of the MoMMA's Voices team right now we're gonna talk a little bit about what we do over here and, and each of us are roles. So one of the things that we started about a year ago was we created what we call the Lived Experience Integration Scorecard. And what this does is it takes what we consider the best practices for patient engagement and, and lived experience integration and how we're raising the bar from engagement and advisors to partners to truly integration. And we have a scorecard that puts together what we consider those best practices. And it's on our website, it's available for anybody to take, and you can see immediately what your score is for your facility, for your organization. And then also how you compare to others that have taken it. We have all of this reporting live available for those that take it. And we took those pieces and we created a training for that and realizing that those, some of it seems simple, it's not always real intuitive. And so how can we help to explain and, and to eliminate as many barriers as possible. And so we put together a couple different ways to present that information. And one of those is through our online course, the LEI Foundations which is about two hours long. And we go through what these best practices are and provide resources and thoughts and, and advice on how to overcome them. We also offer this in different settings such as workshops where you bring different peers together and faculty that are able to present on topics and give different perspectives. And we want to model that same best practices with our trainings. We do also do hybrid. Participation in, in a course that is designed to go over multiple weeks and we provide space for peer-to-peer sharing and learning. That is really where the magic happens, and those that are doing this work are able to find support from others that are working to engage patients, they're able to hear how some people are overcoming challenges and share what roadblocks and things that they're having to, to deal with and see what kind of advice that they can get. And it's so powerful to see it happen in action that oftentimes at the end of these hybrid model courses that we, these classes that we. The participants don't want it to end. They feel like they have really found a community of peers that understand what they're doing as well and are all working towards a common goal. And so we recognize that it is two sides to, to working together and for patient engagement, for true lived experience integration. We need to train patients and we also need to train providers and clinicians on how to work together. We really, truly wanna set everybody up for success in knowing that by doing this that hopefully will happen. So I'm gonna let Bekah talk about our patient family partner training and what is included in that and how this all comes together.

Thank you Nicole. Mandy actually mentioned just a few minutes ago, PFPs, and that's what we call our patient family partners that are going through this training and this training is to help teach them how to. Online platform. They have video modules that they watch. They have an assessment where they really think about if they are ready to embark on this journey of patient advocacy. We recognize that not everybody is ready. Sometimes we have our PFPs start and they decide that they need to press pause for a little bit, and that's okay. We want to give them the freedom to feel like they can take ownership of that. And we want them to be we really just want them to feel as equipped as they can be. And so we provide direct coaching and mentoring for them as they heal from this. And this is just the best part of my job, really getting to talk with them and have them unpack some of the painful trauma that they experienced. And sometimes they say things to me like, I've never said this to anybody else before. And it's just a real sweet, nurturing, safe space where they get to talk about what they went through. And I get a front row seat just getting to watch them heal. They also are able to connect with other PFPs and build that strong community. So just like Nicole was talking about they, they didn't want, our faculty didn't want our last community of learning to end because you build that bond and there's something to be said about us all coming together as a community and we recognize that we might each have different pieces of our story, but we share that same commonality and bond and experiencing a trauma and that passion and fire to want to ensure that no other family has to go through. We also offer support and training to them with continued education training, such as specific topics that they might be interested in. So MMRCs, the AIM core safety bundles different ways to get involved in quality improvement, such as state PQCs and getting involved in research and policy work. We really also focus on giving them the space to find their key message. And so they might come to me and say, I have this really extravagant story. How on earth can I go sit on a panel or how can I go speak at a hospital? I don't know how to make my story impactful. And I get to unpack that with them and I get to hear what it is that they really want to convey. Then with that, but additionally, they also get support. Before and after engagements that they do where they feel fully prepared before the engagement, but then also have that continued support following it because we understand that it can be traumatic no matter how far removed you are. From your experience, it can still be re-triggering. So we really just wanna support them in any way that we can. I like to joke and say that we give them their wings to fly. You're not limited to doing engagements with just MoMMA's Voices so often we will partner with, we'll partner you with another opportunity and you will get other ones from that. Somebody might hear you speak and say, we wanna talk to her and they get your contact information and it just continues from there. So we want you to take your advocacy work where you feel called to be and just continue to do that and take over the world. And so now I'm gonna turn it over to Emily, who does such a great job with our matchmaking process and really helping to connect all of those dots of speaking engagements and all those logistic.

Thank you so much for that, Bekah. I'm excited to talk about our matchmaking process that we have with our wonderful certified PFPs. We have a template on our website that you can fill out the more information that you can give us. The better we're able to match you with a perfect person. After you fill out the engagement form, you can schedule a call with me. And this is really to get to those details for me to understand at the core what kind of person you're looking for. Are you looking for a particular part of their story that you wanna focus on? Are there certain demographics? You're looking for our location. I really like to discuss those details in person to get a sense of who to match you with. Then I'll search for who I think will be the best person for this project, and I'll send you their headshot. And CV for you to review if you agree. I like to do an introductory call with them, and I always like to be a part of that process. Then we can really talk about what this engagement entails. If it's a virtual engagement, we'll discuss the technical details of the event. Do they need slides, paperwork filled out? Do they need to address different parts of their story to the audience? Will there be a q and a? What type of audience can they expect to be talking to? How early do you expect them to arrive? All these things help our PFP be as prepared mentally and professionally as possible. After the engagement, both PFPs and the provider receive a survey. To make sure that one, we have prepared them as best as possible, and two, if it was actually a meaningful experience, because it's one thing to have these engagements, but at at the end of the day, is it going to change anything? And we like to send those to the providers as well. Same sort of questions. Did we, were we able to help you the best we could? Did we match you with the best person? How did that person do during that engage? All those pieces are really important for us to, to learn from and continue to be the best possible matchmakers that we can be. And one thing I want to note about the matchmaking experience is what we like to call unicorns. Why we love to place you with the perfect person that you're looking for. And sometimes we can, sometimes we can hit all of those details that you're looking for. But if we can't, for example, you're looking for someone in a particular location I encourage you to give us the opportunity to give you several different voices to represent the things you're looking for. For example, someone from New York to speak, that can speak to their experience and then possibly in another state for demographic or a piece of their story that you're looking for, or for example, how long ago they gave birth. I really encourage you to add more voices in there if we cannot find you the perfect unicorn that you're looking for. And the reason we recommend our PFPs, rather than just a connection you've made, is because they are reliable. They've been through our training so they can be prepared, are mentally supported, because this can often be a triggering event like Becca talked about. They already know how to tailor their story to different audiences and so much. Next Mandy is gonna talk to us about support bundles.

Thanks Emily. One of the opportunities that our PFPs and MoMMA's Voices engaged in and continue to be engaged in is the AIM support bundle initiative. We've been working with AIM, which stands for the Alliance for Innovation on Maternal Health, on support bundles, by both providing patient voices and also by engaging providers to assess the feasibility of the suggestions. There are many bundles that are condition specific such. Hemorrhage, hypertension, mental health, severe maternal events, and many more. Once those bundles are complete, they provide guidance, actions, and resources to the healthcare providers so that they can provide the best and safest maternity care and outcomes to all birthing people, in addition to educating medical professionals. MoMMA's voices also emphasizes the importance of educating our own community of advocates, moms, and support people. We do this through our quarterly community calls. These free virtual webinars are open to everyone, even if you're not a PFP. Anyone who's interested is welcome. The calls are an hour of an expert speaking on a topic, then followed by community conversation. The conversations are always interesting and can go anywhere. Past topics have included setting healthy boundaries, asserting yourself allyship and inspirational stories from different PFPs and engagements. Participants come out of these webinars experiencing all the feels. Sometimes we feel empowered to action, and sometimes we laugh together. Sometimes we cry, but we're always learning and bonding. These are great opportunities. I love them personally, and I hope that we see all of you at our next community call. Feel free to sign up on our MoMMA's Voices website, mommasvoices.org, under the events tab, and also on that tab you'll find the recordings of past events. If you can't make it, we would love to see you there.