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[00:00:00] We are here today with Trinity Marsh and she is joining us on our second season of the Power of MoMMAs Voices podcast. And we're really focusing in on the voices of those with lived experience this season and I'm, I'm very thankful to have her joining us.
So, Trinity, first we wanted to just kind of start with the end in mind and what are a couple things that you want the audience and the listeners to hear from and learn from you. So I think like the biggest takeaway would be that you are your greatest advocate and, honestly, the fight for improving maternal health does not come easy, but it is worth it.
And I can kind of give a little bit of an introduction if you'd like. So my name is Trinity and I recently moved to Minnesota with my husband. I experienced an early pregnancy loss and I realized there were a lot of ways to improve care for women in this area. So my story specifically sheds light on having a rare disease and the [00:01:00] challenges of self-advocacy
the lack of support systems for early pregnancy loss and then falling through the cracks even when there are systems in place. I knew right away I didn't want my experience. So I went to work starting a volunteer program for Mayo Clinic for Bedside Bereavement. And I believe my story matters because so many parts of it are heartbreakingly common, such as being ill prepared for an at-home miscarriage.
And I wanna inspire other women to share their stories and take improving maternal health into their own hands. So thank you for listening. So important. , I was at a meeting recently. It was the same kind of thing of listening to multiple reoccurring early miscarriages. And, and while we wanna reassure people that, it's common, I think in a way that's like, it's not that it's normalizing it, but in a way that like there are other people that have been in your shoes. How can you get support kind of thing. It's not to be dismissive, but like, how can we help one another? So thank you for your bravery of, of taking something that you've been through and, and wanting to share that and [00:02:00] utilize that for good things.
I really, that's my heart as well. So tell us a little bit about your, your story. What, in your moments, what, in what in your journey to what moment, in your journey to becoming a maternal health advocate? What stands out most in your mind? I think just saying that you kind of start out this fight for improving maternal health feeling already wounded.
So not only was I going through a heartbreaking loss, but I had to go through each part of that process in my mind and figure out. What went wrong, what could have gone better? And then I had to put myself out there and push to get in front of the right people. I had to retell my story with each new connection I made.
And I really had to fight to stage true to my experience. And that last part is something that I felt was really important to touch up on because oftentimes when I shared my story. [00:03:00] Story to people that can fix the system and create this change. They were defensive and tried to shift blame onto me, even my partner.
They tried to change or cover up details and these people mean well, they really want to improve maternal health. But I think to say something. Means improvement means to admit that there was stuff that went wrong or stuff that could have gone better, and that's a much harder feat. So, I was really grateful to receive all the care that I did, and I have the greatest respect for the institution that I got care from, but I think that it's definitely an uphill battle.
So you have to find people that are excited about this mission and, yeah, it's just really important to keep that in mind, that it is definitely a challenge. What, how long after your losses did you get start getting into advocacy work? It definitely wasn't long after at all. So it was about.[00:04:00]
Maybe a month or two after my miscarriage process, which was prolonged that my insurance did a warm handoff to a nonprofit called the Star Legacy Foundation, which is actually based out of Minnesota. And I realized that there were nonprofits like this that could provide me those resources and that support that I didn't receive.
And then I also. Connected to programs like the Hugs program based out of Madison, Wisconsin, and talked to them and realized, okay, there are programs that are able to kind of take that nonprofit model and replicate them in hospital systems. So once I learned about both of those two programs, I was like, this needs to happen.
And I just think that my experience, I just felt like every single day that I wasn't. Doing something to fix this and make sure it wasn't repeated. Other women were going through it and also falling through the cracks. So I think a big part of me kind of processing my own healing was making sure that I could help other people.
That's, that's [00:05:00] such a common thread that, we hear and is one of my own experience as well. It's like I wanna be able to help people find light, after going through something so horrific. And life altering that there, there's a pathway after such loss and, and how we can work together. We can support each other.
And really coming to the place of like, I want the next family not to have the same experience. I want my children not to have the same experience, that I went through. And, and I was explaining that to my daughter last week. She goes, why do you do this work? And I said, 'cause I don't want you to go through the same thing I did.
And so it's, it's really a, becomes this generational thing. It becomes this like life purpose thing to making sure that other people have better experiences than we do. Yeah. That's a beautiful way to put it. Mm-hmm. So you talked about like your advocacy journey. If there's anything that you would wanna share about your pregnancy journey, it's completely up to you if you wanna share anything about that or not [00:06:00] looking back like.
What are the warning signs that something might have been wrong? Yes. So this is definitely, I think the bulk of what inspired me to take on advocacy work and really speaking up about my experience. There was definitely warning signs that things were going wrong before the miscarriage happened, and then after the miscarriage, itself
with the at-home miscarriage procedure. So my pregnancy loss was complicated by an ultra rare blood disorder that I have. It's called congenital thrombotic Thrombocytopenic Pap. And so it was a very involved miscarriage process. I started with an at-home miscarriage, and then I had two subsequent DNC procedures.
So it took about a month to get through the physical loss of my baby. And it started pretty early on with an ER visit 'cause I had intense abdominal pain. And one of the providers that I saw that day actually came in and told me that I didn't have the condition that I had, and even [00:07:00] if I did, it wouldn't be dangerous until after delivery.
And that was a lot to handle. I wish I wou- they would've taken a second to ask why I thought I had the disease I have. 'cause I did have all of the diagnosis paperwork in my purse, just ready to prove it. And just how dangerous that information was because with this condition there's a 90% mortality rate if you don't get prompt treatment.
But I think that I was just a little bit too tired after five hours in to kind of fight and advocate. For myself. But a couple weeks later, after hearing a healthy heartbeat, twice my symptoms started decreasing. And despite some worry, it seemed like each appointment was kind of reassuring me until the last ultrasound.
And at that appointment, they, a second ultrasound was requested by the doctor because she said she couldn't get a good view. And so during the second ultrasound, I was looking up at the screen and joyfully commenting on how big the baby had gotten. When the ultrasound tech interrupted my sentence with, there's no [00:08:00] heartbeat, and I kind of just let out a quiet O and kind of just felt myself deflate and just filled with shock and.
Just replace all the happiness that I walked in with. And I was still undressed, I still had the medical device inside of me, and she said that she'd take some pictures, there's tissue on the counter, and I can get dressed and meet her outside the room when she's done. And my mind went blank. My hands just started shaking, but I kind of followed her directions and did what I was told.
So I got dressed and followed her outside of the room, and then waited in the doctor's office alone for 30 minutes. Just in complete shock. Silent. And when the doctor came back in, I immediately broke down and she started quickly introducing three other nurses into the room who I could barely see through all the crying in tears.
And the bereavement nurse sat down with me and the first thing that she said was, I bet you weren't expecting that today. Huh? And I just broke down even more. And then she asked if I had someone to pick me up. So I told my husband [00:09:00] to come to the hospital and then it, they just quickly went through the different ways to go about a miscarriage, how I could perform genetic testing, and my hands just filled up with.
A big white plastic bin, a set of gloves, a clear tube to put everything in for testing. And the only thing that they, the only information I was shared with about the testing procedure was put everything in this clear tube and then you can drop it off and you don't have to talk to anyone or say anything.
And you, you don't have the mental clarity at that appointment to ask what goes. It's involved in testing and what happens to my baby and what does that process look like afterwards. And that information was never shared with me. So if I would've gone down that route, I, it just would've all been a complete surprise to me.
And then, you know, she did mention that there was some support materials and the mini binders. That they gave me, but they were never pulled out. She never explained to me what they were for, what to do when I got home. And I sat with this news that there's people that have [00:10:00] been through what I'm about to go through and what I've already gone through, and that they can help me and that they're not connected to the institution.
So there's just a variety of like local and national resources. But I really wasn't told any of that, so I kind of felt like I was. Taken care of as a patient and then quickly rushed out of the room to my next appointment. And I also wish that they would've offered to cancel that next appointment or have the phlebotomist come up to the room to do the blood draw in that same area.
But instead, I, you know, walked to the next appointment having a panic attack and choking back tears and gasping for error. And then when it came to the. At home miscarriage procedure, I was so devastatingly ill prepared for that process, emotionally and mentally and even medically. It was only a five minute appointment where I took an oral pill and they just told me to go to the pharmacy and get more pills after, and I really wish that they would have walked me through what [00:11:00] to mentally and emotionally expect and the warning signs to look for after a miscarriage.
Or at least just brought up support materials and resources that I could do on my own time when I got home. But instead I was just given the sole instruction to look for the deflated golf ball and I'd be in the clear. So there's so much that I would say to a woman about to go through an at-home miscarriage that I wish I had the mental and emotional clarity to look up for myself.
I would've prepared myself and my partner in the room very differently. I would've chosen to use a less used bathroom, so I didn't have to continue to go back to that scene in the moments after. I would've had a potted plant ready for when I decided last minute that I couldn't put my baby in a tube for testing.
So after going through definitely the worst day of my life, it was a month before I'd even be through that physical part. So a big. Kind of passion for me is to [00:12:00] focus on at-home miscarriages because I just felt like there was so little support and information given to me going through that. I feel like and I've said this many times before when I'm speaking, but when we're talk about with, with when I talk to providers and nurses and things like that I talk about.
Birth trauma. One of the things I share with them is like, if we can address the expectations and set the right expectations, because we're expectations in reality different, that's like the breeding ground for trauma. And so like if you had been explained to what are the options fully through, like what each one, what the pros and cons were having really the true informed consent so that you were aware and not just in that moment, but later on.
So that they could get the right kind of support. It's, it's just like people that have never been through this before, they don't know what to expect, and so you offered some really wonderful. [00:13:00] Options, you know, that for the next person, like you said, like helping the next person, some things to consider that you hadn't considered.
Those have been fabulous things for those bereavement coordinator, bereavement nurse to, to talk with you about as well. And I don't know about you. I've seen it and I received one myself at one point in time. Just like a sheet of kind of front and back, like here's some different groups that are out there, some different resources, but if, if someone had taken the time to like, let's talk through them.
Let's make the phone calls together and, and helped, and that, like, let's find out when their next meeting is, where to go, those kind of things, like that support would've been helpful as well because it just, for a long time just sat by myself. With my grief. , And so a lot of different solutions that I think are wonderful and and necessary.
And I can add on to that, that even that piece of paper that would've been so helpful to have been given , because I just don't, you're just not in a [00:14:00] situation where you are the one that's able to seek out the help you really need to be given help at that moment. And I think that's a big reason why the nonprofit, the Star Legacy Foundation.
Stood out to me because it was that warm handoff from my insurance provider that let them know this is someone who needs help. And so they reached out to me and called me and said, you know, are you ready to talk about this? And I think that that made the biggest difference 'cause, and the many conversations I've had with the program director, Lindsay Wimmer, she has shared that the hardest two sentences a woman can say at that point, or I lost my baby and I need help.
And it's very difficult to get to that point where you're strong enough to reach out. And so you mentioned your insurance company made the referral to the Star Legacy Foundation? Yes. Oh, that's fantastic. That is, a fantastic service that they did and being able to make that connection to help you out.
So that is, is [00:15:00] really wonderful and heartening to hear. What I mean we talked about like what kind of support, like lack of it that you experienced. Was there anything that else that was like good once you maybe got connected with the Star Legacy Foundation or from friends or family? Yeah, so, I
the, the Star Legacy Foundation itself was amazing and they're so helpful and having that warm handoff was honestly very, very much needed. But I also wanna say that like the institution itself gave me a lot of great care too. And then, like, well, first and foremost, I wanna focus on the support that my husband gave me because he was there throughout the at-home miscarriage process and was also just emotionally torn apart by the loss of our pregnancy and the entire experience.
And I wanna make a quick note for other people that might have spouses in the medical field and might feel maybe a disconnect when something like this happens. Because at the time my husband was in. [00:16:00] School and learning just about everything that could go wrong with a pregnancy. So I think his mind was a lot more prepared for just how many things we were up against.
But just because he was more prepared for a bad outcome doesn't mean he was less affected when it did happen. And so I'm really happy to share that we are currently expecting with our second pregnancy, and he's definitely been able to shift that perspective from how much can go wrong to the miracle of everything.
Going Right, and I also just wanted to share that I never had the chance to announce my pregnancy publicly the first time around, but I made the decision to announce our loss, and I realized so many relatives and close friends had been through this experience and carried it. So close to their chest.
And it was really hearing healing to hear their stories and learn their baby's names and kind of share in our grief. And so I made the decision with our second pregnancy to announce early [00:17:00] because I didn't want to wait to share our happiness. And I realized that I might have denied myself a larger support group had I not been open about our loss the first time around.
But I, I will say when it comes to friends and family that. It, it's really hard for people to know what to say and to say the right thing, and I'm sure that many listeners have a lot of instances popping up in their head when I say that. So I think that you have to decide what support is gonna be right for you, but I definitely think get to the point where you can seek out support if it's not given to you.
Yes a hundred percent. I can think of all those times in my mind. So often when I'm faced with a friend that's had a loss, whether it's a pregnancy loss or just a grandparent, you know, someone that's like well expected that says like long and wonderful, fruitful life. It's like, this just sucks. It's just like those, there are no words, there's no right words [00:18:00] besides, this is terrible and I'm sorry because nothing can make it better and so many things can sound just.
Terrible. When you're the person receiving them. And, and I have to, I've had to remind myself it's, I don't think out of a place of intentionally trying to be hurtful, just not knowing any better. So, but it's, it's hard. Then you have something else you have to process when you leave that situation.
Yes. Has there been anything, was there a particular moment that you felt seen or heard? What made that, if so, what made that stand out to you? It was, it was basically someone just saying exactly what you just said. So I wanna reiterate that I did receive a lot of great care and I had a lot of healing conversations with healthcare team members after going through that.
So the week of my miscarriage, I had to go back into the hospital for a plasma infusion and I was there laying in bed for hours and hours and I was kind of writing in my notes. Just [00:19:00] my thoughts on everything that had happened that week, and I was asking myself if I could improve one thing about this whole experience, what would it be?
And like what would've made the biggest difference to me? And I wrote down, I think just human touch and just the words that, I'm sorry that this happened to you and that just. Would've changed so much for me. And my infusion nurse was going through my chart and learned everything that was going on, and she placed her hand on my forearm and squeezed it tight and my eyes just filled up with tears because I felt like, you know, she was seeing my humanity and not just my medical presentation.
And it just, it meant the world to me. And it wasn't, it wasn't saying magical words or, or doing something, you know, out of the ordinary. It was really just. Recognizing that loss and pain and grief. Was she, did she go through your chart without you knowing it, or were there questions after? Oh, no, no. It was, it was relevant questions.
And I had mentioned, you know, some, some things [00:20:00] that have happened that week and we kind of got talking to about it. Okay. Curious. And sometimes, you know, you don't wanna have to repeat yourself over and over to a stranger and so. If, if a care provider can come in the room and they have some knowledge about what you've been through ahead of time, then they can offer the compassion without having to maybe rip open the wound.
And having that, have that conversation is something that I've, I've experienced and I know that people, we've had conversations about as well, it's like you have the people that bared the room and no idea, and then they took their foot in their mask. So mm-hmm. You know, being aware of, of a patient's experience and knowing maybe that there's an opportunity and some time just to look through the chart.
I wish there was a, a tag that was like put on everybody's charts in a way that was very easily and flashed up there and said like, you know, recent loss or something like that. So that they could just be more mindful [00:21:00] about where you're at mentally, where the patient's at, mentally, where their family members are at as well.
That's a great idea. And I think that I'll be bringing that up to our program. But like that's, that's definitely, and I think also just adding to that tag. 'cause I really do believe that no matter where you were at in your pregnancy, that doesn't determine the hole in your heart. But I think that it definitely guides conversations too.
'cause it just, with my second pregnancy and having these first. You know, prenatal appointments happened very recently and. So right away it was brought up that I've had a previous loss, but then the provider went into, well, you know, don't worry. Like now that we've heard healthy heartbeat, you know, multiple times, like your risk of miscarriage has gone down significantly.
And kind of was going on the speech and I had to, I felt so bad, but I had to interrupt. And say, I, I heard a healthy heartbeat multiple times last time too. So it was just, you know, like maybe [00:22:00] having a better conversation of if you have a previous miscarriage, your chances of a subsequent one. You know, it's not dependent on that, that might have been a better conversation, but I do think having those that just like quick thing to inform them makes such a big difference.
'cause it's, it can really change the tone of the conversation. For sure, for sure. If you could go back and talk to one of your healthcare providers, what would you wanna tell 'em about your experience? I think that I would honestly just be, just do exactly what I've been doing to every healthcare provider I've talked to since, which is just sharing my story so that whatever is in their control that they can prevent for that story.
You know, they're able to, and, so many people have been so. Praying for this program's creation and its success after hearing my story. So I think like [00:23:00] the emergency room part of my journey kind of shows how difficult it is to navigate the healthcare system. If you do have a rare condition it's very hard to speak up and stand up for yourself, especially when you're in a low point physically and mentally and emotionally.
And I think especially as a young woman, I've had to take my health very serious. In order for others to, and then just early pregnancy loss itself was treated very differently. There was less support, less personalization, there was less resources. So I, I just don't think it's acceptable that women with early pregnancy losses are more likely to fall through the cracks in receiving compassionate and proper care.
So that's just another big focus that I try to bring up to each person that I talk to. Fantastic. I'm thinking of, there's, there was a conference I was just at, we may cut this part out completely. The conference I was just at and there was a woman there that was speaking that had had nine losses before she had a successful [00:24:00] pregnancy and she had incompetent cervix and trying to get to a place where she could carry her pregnancy took so much.
And one of the things she was talking about was like, palliative care. How palliative care is not what we typically think about, and like how to introduce that concept into prenatal care, whether it's a loss or a healthy pregnancy, or at risk pregnancy, but how to introduce that care and making sure that patients are supported with all the resources the mental health, the support, the answering, all the questions, just taking that extra time to meet with them.
And, and give them the space too, to realize like, this is a lot at one point. This is a lot at one moment. And what are you going to need a day from now, a week from now, a month from now? It's gonna look very different from what you need. The moment that you hear the news. Mm-hmm. I think you said it perfectly when you talked about that gap between [00:25:00] expectations and the reality.
Because, you know, when you go into this process with these quick appointments where you know nothing is slowed down, everything is, you know, rushed at you and you're told it's a rough period, take take a, you know, an Advil and that experience is just so much more traumatizing and, and painful than you.
We're told it's very difficult to go through. And there was a lot of things that I learned about after the process where I was like, man, that I should have been told about this. Like even, miscarriage, doulas, if you have to go through that process alone, that's just not something that's brought up in those quick appointments.
So I'm not a need for awareness and education on doulas and what they do. Oh my gosh. I, I, it was like, no, no, no. I don't, I I'm not crunchy granola. I don't need a doula. I thought like a doula was interchangeable with a midwife. And since then I've learned how many doulas there are and many multiple different aspects of our healthcare system, and just the general [00:26:00] population not being aware of the services that they really offer.
And I, I agree with you, like miscarriage, bereavement, doulas, like they serve such a special role and being able to connect with one of 'em would be such a benefit. Now you spoke about your husband being in healthcare like training. Is he, what's he going to school for or is he done? Well, he's currently in medical school, so he is wanting to become a doctor himself.
So does that change? Does he feel like I, I've, I've noticed this before, when talking to healthcare providers that also have a lived experience, they feel like they don't know what hat to put on. Sometimes and then they also feel like they're judged a little bit. Like they should know better because they have that extra training.
And so there's a lot of assumptions made. Like, well, you've had that training you, you know, that like we don't have to explain all of the things with you. So I don't know if that's something that like he has felt [00:27:00] or if he would even be aware if that is something that he has felt or not. I don't think it's something that he's felt yet, but I definitely think that this experience, it is beneficial.
I just think that having a personal tone to each thing that you've been through, it, it just, it changes your thought process. I mean, no healthcare worker is above like a certain level of bias. And so I think that, and like a big part of this program was, you know, fighting to not. Vilify people. 'cause I think when you're sharing that things went wrong you know, when you're trying to improve maternal health and you're talking to healthcare providers and hospital systems, they are going to be defensive and they're gonna wanna say, well, you know, like, maybe, maybe you pressured them to tell you the news.
Or maybe they felt like you'd be mad at them if you, they didn't quickly share the news. And, you know, they, they want to kind of protect like their system and their people. But I, I think that it's. It's definitely [00:28:00] not trying to cast blame and because no one's gonna get it perfect, no one's gonna say the right thing, even if they have been through it themselves.
And I know that so many healthcare workers and my husband has shared these stories where he's talked to doctors and has learned from doctors where they've, you. Been going through a miscarriage and had to show up for a shift. And I've personally talked to nurses where their wife was at home actively going through a miscarriage and they're on an ER shift and a woman comes in going through a miscarriage, and that's who they're taking care of that day.
And these are heartbreaking, true stories. And so I think that you know, no one's gonna get it right even if they have been through it. But I think that it's just realizing like each time you go through something, just keeping in mind that it. If there was a way that it could have been better for the next person, let's do that.
And it's not about, you know, shame, it's not about blame, it's just about let's just keep improving it for each new person. 'cause it can always get better. And I think a big [00:29:00] part of this program is that you can never give too much support to someone in this situation. Excellent. Yeah, for sure. It's, it goes back to that compassionate, like treating people like human beings again and bringing that humanity back.
And so healthcare where it doesn't feel like it's a conveyor belt, but doesn't feel like it's a factory through line, and we're just cranking people through every person's different. Every person's previous experiences are different. That's what makes us who we are. And so we need to be responsive, as healthcare providers need to be responsive to what that is and, and providing that appropriate care for patients.
What would you say to someone who's just beginning their own journey with this condition or experience? And they might consider becoming Obama's voices patient, family partner. What would you say to somebody? I would say that MoMMAs Voice's Mission, when I learned about it, it was exactly what I felt like in my heart needed to be done.
And so despite having [00:30:00] this rare condition, I don't believe a lot of what I went through. If not, the majority of it is unique. And so I would say just take that. Step and every other one becomes easier. It's definitely a hard journey to retell your story and put it out there and be very open about what happened to you.
But and some days it's fuel to the fire to find out that other women have had similar experiences, and some days it just breaks your heart. And so you have to really take it day by day and know when to keep going and when to kind of take those moments to grieve and focus on your own pain and loss.
But I will say that once I shared my pregnancy loss and started talking about my story, and I realized how many people in my life had been affected by pregnancy loss and were looking for an opportunity to say their baby's name and share their story, it really became healing for both sides of the conversation.
Fantastic. How has telling your story through Mel's voices, has it changed how you see [00:31:00] yourself? Well, I definitely realized how much I fill up my own cup by pouring for others. And I think I learned that from my own mom. She raised four kids and took on, you know, the bulk of just helping us grow up through hurricanes, destroying our home, through financial crashes, through my dad's, multiple military disappointment deployments.
And I didn't realize I didn't know how I was gonna start healing after my own pregnancy loss. I just felt dazed from that month long process of just trauma, of not knowing what was going on, what was gonna happen next, and just being ill prepared for it all. But, I did focus on connecting with others.
I put my grief and my story out there. Retold every heartbreaking detail to each new person that got added to each new meeting. And I just kept doing it over and over again until I made this program a reality. So I'm very proud of myself. I'm very proud of Mayo Clinic and the people [00:32:00] who have worked hard to make the program a reality and the countless others who prayed for its success.
And I'm also proud of the other people that I've learned from at MoMMAs Voices that have had the strength to share their story and help others. Thank you. I'm glad you're here and that you found us and have been able to, share your story in this way and many others as well, because I know like you're not alone.
For sure. And, and so being able to be that voice for change, be that light for someone else that may be in the midst of going through their own loss , at that time, it is just so healing. To some folks. I won't say that socially healing to you. It's been healing for me. And so you know, I just really appreciate you for, for taking that.
Really, I can't say anything else besides a brave step. Like it's, it's, it's a vulnerable, like you're sharing your hardest, hardest days and being so vulnerable in that space to open yourself up, to reliving [00:33:00] that and being, putting it in a way that's gonna help other people. Thank you so much. I really appreciate you taking the time to talk with me today and for everyone for listening to my story.
Well, thank you, Trinity.
