Episode 10 - Turning Pain Into Purpose with Mandi

Hello and welcome to today's episode from Power of MoMMA's Voices. My name is Bekah Bischoff and I am the program manager. Today we'll highlight a certified patient family partner who is also one of our MoMMA's Voices team members and one of my dear friends, we'll talk about her experience in pregnancy, the postpartum period, and also how she came to MoMMA's Voices. We hope this will give insight to our listeners about different perspectives while also creating a greater sense of community. I'm so excited to introduce our guest today, Mandi Gross. Mandi is a survivor of postpartum preeclampsia as well as postpartum depression, anxiety, and O C D. She's a certified patient family partner, being one of our first advocates to get certified and has been the administrative coordinator for Mama's Voices for the past year, and thank you for being here, Mandi. It has been such a joy getting to know you and seeing you grow as an advocate. I would love for you to share a little bit about your birth story with

us today. Thank you so much, Bekah, for inviting me to be here and share my story. My story started about a week after I had my daughter in 2013. I had a C-section, so I was in the hospital for a few days and I had just returned home. When I woke up with the worst headache of my life, it hurt so bad. I remember part of me just thought that could be a normal thing following a C-section after 16 hours of labor. But there was also part of me that thought if this is the worst pain I'd ever felt and I had just given birth, there must be something wrong. So I called the doctor and they told me that if it hurt that bad to go to the emergency room. So the closest emergency room was a standalone er near my house, and it was not affiliated with where I delivered. So my doctors did not have privileges there, which created problems later. When we got there, my blood pressure was elevated. I was hyper reflexive. I continued to have that worst headache and no one informed me along my whole birth pregnancy journey that postpartum preeclampsia was even a thing. I had never heard of it before as we sat in the ER for hours. While they were taking blood and running scans and other hospitals were consulted on the phone, I didn't know how to advocate for myself cuz I had never even heard of this condition. All the while my blood pressure was still going up. The headache continued. I remember asking for them to give me some medicine to make the pain stop, but they wouldn't gimme anything until we had filled out all the paperwork and met with the doctor and signed all the waivers and all of this was going on while I was experiencing the worst pain of my. My pre-pregnancy blood pressure was actually super low, so being anywhere near the one 50 s over nineties was very, very high for me. More than someone who was blood pressure was high before. So eventually they decided to transfer me to the full service hospital close by to the labor and delivery department. And as I said before, my doctors didn't have privileges there, so, I had to see whoever was just on call that night who didn't know my story or my history. We waited in that ER for hours for the ambulance to arrive, and once it did no one instructed the paramedics that I had a c-section. With an incision that was not healed. And they said that had they known, they would've been more gentle. So they were fairly rough moving me around and hurting the whole time. No one told us what was happening and to the extent that this could be dangerous. I remember my husband asking them, are you gonna take us using the lights? And they responded, not unless she tries something, which at the time we thought was a joke. I spent about 24 hours in that hospital on magnesium IVs. But they never gave me blood pressure medicine. I remember the sting of the magnesium, which other people with preeclampsia would, I think, relate to. It just hurts when it's going in. While they were there, they continued to run tests and an M R I that they did run, revealed a pituitary cyst. This was announced to me in the middle of the night, and I was told that someone would explain it to me in the morning. So as anyone being told that something was on their brain and they didn't know what it was, I started to panic and cry. And my best friend's husband is a neurologist, so I panic. Called them in the middle of the night and he talked to me down and explained my condition. He asked if I had preeclampsia or eclampsia, and I said, well, I already had the baby, so I guess eclampsia. And he had to explain that that's not how this works. Pre-eclampsia even after you deliver, it's just postpartum pre-eclampsia, which now I know, but I'm so thankful that I had him to talk to because otherwise I would've still been clueless as to what was happening in that room. My doctors did not visit me there because they didn't have the privileges. I was discharged without blood pressure medication. With a bunch of discharge papers saying delivery is the cure to preeclampsia, which clearly in my case it was not. One day later I had a recurrence of the high blood pressure, the headache, all of the things, and I was readmitted. I was given more magnesium, more days, discharged this time with medication. That whole situation resulted in postpartum anxiety, depression, P T S D O C D, and years later, I'm still afraid to be too far from medical help. When people say, what are the odds of that happening, that's so rare? Well, what I had was rare and it happened, so I never trust that things won't happen to me again. Wow.

There's, oh gosh. Thank you so much for sharing all of that. There's so many things that could have gone so differently for you. I just want to acknowledge that that was really hard for you to relive. I know that. You know, it's been years and you've gone through training and healing and all of that, but it's still is hard to relive that and uncover it. So thank you for being willing to share that. I'd like for you to share a little bit about what inspired you to take your experience and your story and become an advocate and how that led you to MoMMA's Voices. Yes, of

course. During the pandemic, like a lot of people, I was searching for a community so I could not feel so alone and isolated. So I joined a support group from Postpartum Support International for the maternal mental health part of my journey. I'd like to shout out now to my support group Mamas who we are still in constant contact and they're wonderful, wonderful women. And I also wanted to be involved in the pre-eclampsia community. So I was watching a webinar from the pre-eclampsia foundation and the speaker was affiliated with MoMMA's Voices and she was so moving and I was just sitting alone and crying about her story. And she recommended that everyone check out MoMMA's Voices. So I signed up for the PFP training that day, and I met you, Bekah, and my life was changed forever. I truly found my calling in advocacy and my MoMMA's Voices crew and I got hired by MoMMA's Voices after a long time of volunteering and advocating, and now I get to work with my friends and do what I love and hopefully help people. And on a personal note, Bekah, thank you for being my guiding light throughout my journey. And I really could not have done it without.

Oh, you're so sweet, Mandi. It has just been such a joy to get to know you and I am so grateful to call you my friend and just will forever be grateful that our paths have crossed you work so hard for all the mamas and it is just, just such a joy to work with you. You have also had some amazing opportunities that you've been able to be paired with since becoming a certified patient family partner. Could you share some of those with me.

I am really lucky to have had some wonderful engagements through MoMMA's Voices and one of them was I got to participate in the hypertension bundle sharing my patient perspective. The bundles are sort of guidelines for providers to follow. So I felt really honored to give my perspective to that. And I also got to serve on the Florida Perinatal Quality Collaborative, the F P Q C. And their wonderful and dedicated group of professionals worked with me to include the patient voice. We've worked together on their initiatives to improve maternal healthcare by having discussions and reviewing handouts and stuff like. They've also invited me to speak at their convention in Orlando and share my story, and that was one of the most fulfilling things I have ever done. Everyone was so welcoming and interested and just made me feel like it was really making a change. Additionally, I am helping to run a diaper and female product drive in my local area. I learned about the importance of having a diaper drive from 2020 Mom, and Mom Congress, which I'm also members of. And they're great organizations that also work with MoMMA's voices. We did a diaper and female product drive last year and got thousands of products. So I'm really excited to do that again this year.

That is so amazing. And I have to ask, did you ever imagine two years ago that any of these opportunities you would've been able to be a part

of? No. I never thought my life would take this path. I actually went to law school as my career and I never thought that it, this is what I'd be doing, but I am not happy for what happened to me, but I am blessed that it allowed me to help others and find my true calling in life.

Yeah, we always say that it's a club that you never really wanted to be a part of, but once you get in it, you find such a great bond and connection, and then all these amazing opportunities that you've been able to be paired with and really be a part of the change in improving outcomes. If there's somebody listening to this podcast now, what advice would you give them? If they are wanting to get involved, but they just really don't know how or where to start?

My advice is totally to do it. It's been such an unexpected, but amazing thing in my life. I would say take the training, join the community, find the momeraderie that we have. The networking groups for certified PFPs are interesting and you meet awesome people. I also support MoMMA's Voices by buying all of the merch. My daughter says that all of my clothes say MoMMA's Voices, and pretty much she's right. So I'm so, so thankful for this community of advocates and also for the mentorship from the seasoned PFPs and the MoMMA's Voices staff, and I'm so happy that I started out with you helping me through the training and now that we got to be such good friends and I get to just be part of this community.

I love that your daughter says that. Oh my goodness. Every time I'm on a call with Mandi, she's always got on a MoMMA's Voices shirt, and I just love that. I just love it. Well Mandi, thank you so much for your time today. I know that this has gonna be such an inspiring episode for our listeners that's really gonna help them want to get involved. And just thank you so much for your bravery to share your story and for just all the amazing things that you have done and all the things that I know that you will continue to do.

Thank you, Bekah, for having me today and for everything you're doing for mamas out there, everywhere

you are. So welcome. Thank you.