The Sad Moms Club

47. Amanda's Story of Loss and Stillbirth Prevention

July 09, 2024 • Joni Lybbert • Season 2 • Episode 47

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In this episode of the Sad Moms Club, we talk to Amanda from Measure the Placenta, who shares the emotional story of her daughter Junie, a full-term stillbirth. She shares the details of the pregnancy and the birth of her daughter. Since losing Junie, Amanda has become an advocate for various practices that can prevent stillbirth including placental measurement, monitoring fetal movements, and advocating for yourself. 

00:00 Introduction to Amanda

03:10 Amanda's Personal Journey and Family

04:16 The Missteps in Junie's Pregnancy Care

12:01 The Day Junie Passed Away

17:26 Coping with Loss and Finding Support

21:32 The Birth and Aftermath

32:08 Reflecting on Grief and Celebration

34:21 Navigating Social Reactions and Support

34:58 The Role of Instagram in Grieving

36:12 The Significance of Orange

39:06 Helpful and Unhelpful Gestures

47:07 The Ongoing Impact of Loss

49:52 Stillbirth Prevention and Advocacy

54:21 The Importance of Measuring the Placenta

59:07 Advocating for Change in Medical Practices

01:06:02 Final Thoughts and Resources

Resources:

Follow along on The Sad Moms Club's Instagram: @the.sad.moms.club

Joni:

Hey everyone. Welcome back to the sad moms club. Today I have Amanda from measure the placenta here on the podcast. I met Amanda through Instagram. She tells about her daughter, Juni, who was still born full term. And how some different points of education would have saved Jenny's life. There's this analogy that I think I've seen in some training that I've taken. where imagine. Several slices of Swiss. cheese, lined up in a row. With some like space between each one. Certain people go through all the holes in the healthcare system and end up with this. devastating outcome. the system completely failed her. in all sorts of ways. And so she and other lost moms. Came together started this organization, measure the placenta to advocate for better stillbirth of prevention education. For them. This includes measuring the placenta at the 20 week ultrasound and trying to get that as a guideline recommended by The American college of obstetricians and gynecologists or a cog. And if they recommend it, then. Everyone within the OB GYN community would start adopting that to ultrasound technique. They also are aligned with count the kicks and. Push pregnancy and just empowering parents to be able to speak up when they feel something might be wrong. I'll link a bunch of different. Instagram's that she mentioned. If this is something you'd like to be more educated about. One thing that she said that I thought was Uh, helpful reframe is a lot of people don't want to talk about stillbirth with pregnant people because they don't want to scare them, which makes sense. But she said, this is information that I needed when I was pregnant. And if I had had it. My daughter would be here. So she doesn't want to scare pregnant moms, but she wants them to be empowered with this education. obviously, you know yourself best, but I do encourage you to listen. Whether you're pregnant or going to become pregnant one day, this education literally saves lives. The statistic is that one in four stillbirths are preventable. So there is certainly work still to be done in this area. Uh, Last thing is her kids come in in the last, like 10, 15 minutes. Because they were ready for their mom's attention again. So the way we say goodbye sounds very abrupt, but it was just what was needed at the time. I think that's all I wanted to say. So let's listen to Amanda.

Welcome to the Sad Moms Club. Welcome to the Sad Moms Club. Welcome to the Sad Moms Club.

Joni:

So today we have Amanda here on the podcast, and she is part of an organization, Measure the Placenta, um, and helps a lot with advocacy for stillbirth. Would that be the right way to say

Amanda:

Stillbirth prevention. Yep.

Joni:

prevention. Okay. I'm just hoping that you'll share your story and I'll ask questions along the way. And, as someone who doesn't know really anything in this area, I have a lot of questions. So let me know if there's anything I asked that's not, comfortable. You don't have to answer it or if it's not accurate, please correct me.

Amanda:

Sounds great. I've got a lot of info, so I am excited for all these questions.

Joni:

awesome. Okay. So where should we start?

Amanda:

my name is Amanda. I live in a small town in Minnesota. I'm the mom to three beautiful girls. Our first daughter Junie was still born at full term, in August of 2018. So she would be turning six this summer. 363 days after she died, We welcomed our second daughter, Coral, wonderfully alive, and actually, by my choice I gave birth to her in the same room that we gave birth to Junie in, which was really special, we can talk more about that. And then two years after that, we welcomed our daughter Jersey, who snuck in also right at the end of August, on August 31st in 2021. so that's our family, so Coral will be turning five, Jersey will be turning three, and then Junie would be turning six, this August. We're recording at the end of June right now. after Juni had died so she was, she was growth restricted. She was IUGR and we discovered that at her 20 week ultrasound and she was our first baby.

Joni:

Can I ask, what did they tell you about it at that point? So like your first time mom, what was your comfort level with kind of asking questions? How much did you know? Yeah. Where were you

Amanda:

I knew, nothing. I did not have a first trimester dating ultrasound which isn't a big deal for many pregnancies, but when it comes to IUGR having that due date an accurate due date is really important. so at my 20's ultrasound, I was going through just like a family practice clinic. so I would see my OB and then like a week later I went to the hospital, to do the ultrasound. And so I was just with a tech and my husband at that. And I remember the tech had kind of asked like, what was the date of your last period? So she kind of mentioned that Jeannie was on the smaller side and was questioning her due date. And then also at that ultrasound, a 10 centimeter fibroid was detected on my uterus, which I had no idea about. I had had a physical right before I got pregnant with her, and you know how they like manipulate your stomach. And I'm, I'm not a large person, like I'm very small, and so, like a 10 centimeter growth on my uterus. That just appeared during my pregnancy, which in my mind was concerning, but, as my pregnancy progressed, it seemed like I was the only one concerned about that. After that ultrasound, it felt like the tech kind of left us with the biggest thing was, oh, we didn't get a picture of the baby's face. We didn't know her gender and, you know, like the first time mom, you're like, Oh, I wanted that baby face picture or whatever, but then I was just like, okay, what about this fibroid? What about this? Like, she's questioning my due date, all of this.

Joni:

Do you remember how big she was measuring at the time?

Amanda:

so she was like measuring two weeks behind at that point. so then I remember like leaving with more questions than answers and they said like, Oh, your doctor will call you. Well, then I didn't hear back. And so then I called, which. Shouldn't be how it works, you know, and then they're like, Oh, we'll look at the pictures. We'll probably have you come back for a rescan so you can get that face. Well, then they actually looked at the pictures and they're like, Oh, we're going to send you to MFM. And So they explain this is a, closer scan, more higher level technology, whatever. Well then, and I might mix up like what I knew at the time versus like what I learned in hindsight.

Joni:

That's Okay.

Amanda:

so then I started going to MFM and she was measuring behind, she was small, and at some point we figured out that there was a typo on the report that the hospital did at my 20 week scan, about the due date. So that just all got convoluted and then she was small and I didn't have that first trimester dating ultrasound. So when I was 28 weeks pregnant, they changed her due date by 11 days. They pushed it out to help for her small growth, even though her head. was like spot on to that original due date. that should not happen. That should not have happened. In some pregnancies, this wouldn't be a big deal. But again, with IEGR, that's a big deal to switch it by then.

Joni:

So help me understand. Did they change it because of the typo in the report?

Amanda:

that was a part of it. because that made it look kind of confusing too. And then she was small and then they didn't have a first trimester ultrasound to go off of. So then they were just like questioning my last period. It made no sense.

Joni:

I always think it's strange. I get that some people, they can be nine months pregnant and not know it. I know that happens, but when you're like, no, I know this was my last period. I know when I got pregnant, I always think it's fascinating. They're like, Are you sure And for me, I did IVF and they're like, oh, you're measuring you know, a little different than you should. Are you sure about your, I'm like, yes, I know when they put it in me. I

Amanda:

like, there's no questions there. And, I know, with science and stuff, the implantation and whatever, but, that's why that first trimester dating ultrasound would have been very helpful, like, go back to, to, confirm. Um,

Joni:

Is that standard?

Amanda:

generally it should be, I think, because I was just going through a family practice. They just, which is what I, like, wanted. As a first time mom, I was like, I'm gonna be low key. I'm gonna be chill about this. I wasn't necessarily on the level of, like, wanting to go all natural, unmedicated, or home birth, or anything like that. But, kind of in the middle of, I want to be this best mom, and all these things online kind of sell you this idea, this best mom. And so, then when she ultimately died and was born, my chart said she was 36 weeks, 3 days. And she was actually 38 weeks and 2 days. And that is supported by her autopsy, it's supported by her placental pathology. When I read her autopsy report, which should not be a word used in postpartum, really, but it said things like her fingernail growth was for 38 weeks and beyond. Her head size was 38 weeks and 2 days, but her body, she had asymmetrical IUGR, and that's a head faring phenomenon that they see in, you know, our bodies are very smart. So, was struggling, and so it all worked together to slow down her body growth to protect her brain, which is wild to think about.

Joni:

That is wild. Do you mind talking about the process of Well, first the MFM, like, were you now being seen a lot more frequently with the MFM?

Amanda:

Yep. Initially I started with every four week growth ultrasounds. And then when I got to that 28 week mark, you know, air quotes, cause who knows was like 28 weeks was like 29 and six, it's so confusing. And then I started doing, weekly BPPs and NSTs. including cord doppler

Joni:

can you explain what those are real quick, just for someone who might not

Amanda:

yeah. So, um, on ultrasound, they look at the baby's cord that comes from the placenta to the baby to check the blood flow there. And that's supposed to be kind of a, hey, you know, this looks good. But also that's only like that moment in time. It's not necessarily predictive. and then another part of this is, so when they told us that she was measuring small, when they changed her due date, all of this stuff, they had told us it was placental insufficiency. You know, us not super educated, we were like, oh, can you measure the placenta? You measure everything else on this baby, you're measuring like the cheekbones and who knows what all. Measure the placenta if you're saying, That's what's causing her to be small, like, how about we look at this, this thing that's causing her to be small more, and they really brushed us off. We can't do that, we don't know how, it's a weird shape, we don't need to, you're already under this level of care, blah, blah, blah. Also, important to note, in this whole experience, I was never, labeled or told you are high risk. that was never told to me, those words were not in my vocabulary until after Junie died, and people were kind of asking me about her pregnancy, and at the time, because I was having all these appointments, I didn't want to worry people, like, it sounds so stupid, but I didn't want to worry people, and so I didn't tell many people about it, and then if I ever did, if I said, oh, I have, a ultrasound every week, people were jealous, like they were like, oh, that's so great, you get to see your baby so much, and I'm like. I think deep down I had this feeling of no, this isn't great, but I never really felt worried, because I was never told, you're high risk, there's a risk for your baby. I think the MFM doctor once said, stillbirth and miscarriage in the same sentence, and it was, We'll deliver you at 37 weeks to avoid miscarriage or stillbirth. I thought like before all of this, if you're pregnant and you're being seen a lot, you feel like something bad can happen. That is the exact opposite experience that I had. It felt like the way that I was being cared for was nothing could happen. So, a big part of that was it was never told to me that I needed to track her kick counts I didn't know about fetal movement monitoring. And, as they were taking off the monitors, so nonchalantly, like, call us if movement changes. But just so minimized, it was not like something could happen. It was never like that. Like, It felt like nothing could happen. And the day before she died, she wasn't moving at all. And that week prior, because I was like getting, you know, getting to the end, I had been in four times. I had, um, issues with my blood pressure. I had preeclampsia. I had a really high blood pressure reading at MFM and they sent me to, OB to triage. Um, and they were like, let's just keep you pregnant because they thought, you know, I was 35 weeks. And they're like, we want to keep baby.

Joni:

Not 37, where they would have

Amanda:

yeah. And so they were trying to get me to 37 air quotes. When I was already there and there's this whole like societal idea that longer is better, especially for a small baby, but like really inner uterine growth restriction means your uterus is restricting your baby's growth. And so like what a lot comes down to is OBGYN is, is baby better in or out? That's where it's at. And so that was not navigated the way it should. I was not educated about those fetal movements. So, going back to like my pregnancy care, I started seeing MFM for, every four week growth check. They told us they would not and could not measure the placenta, it wasn't necessary, blah, blah, blah. Started going for weekly BPPs and NSTs with those core Dopplers, she kept growing, but her growth on the chart just continued to go slower, lower, lower, lower, lower. So then they bumped me up to twice a week BPPs and NSTs, so every three days I was being seen. But again, nothing was ever told to me, we're doing this because something could be wrong. was like, we're doing this so nothing goes wrong. I even remember a tech cause I was watching on the screen and I was like, Oh, like, there's a baby's head and there's her stomach and like, the darker color means liquid or fluid. And she's like, wow, you know more than I do. You were just in, like, why are you coming in so much? Really, like, this is unnecessary.

Joni:

Yeah encouraging you of, like, the baby's totally fine.

Amanda:

yeah, and the last BPP I had before she died, she was not moving. And,

Joni:

BPP. What does that stand

Amanda:

uh, sorry, biophysical profile, so that is a ultrasound that, they score the baby on four things, um, tone, movement, amniotic fluid level, and practice breathing. And so the baby gets either eight out of eight or anything lower that's, cause for concern.

Joni:

Okay.

Amanda:

And they have 30 minutes to get the score of eight, and you get two points for each of those categories, that last BPP, she was not moving. And the tech said in the last 30 seconds that she passed. And this was the tech that was like, oh, I don't know why you're in so much. like, oh, she moved. She passed. You're good. Well, it because we didn't know gender and I was like dude, I'm like full term pregnant here I did not feel that I did not see that but it was like, you know I've been seen so much like they would have told me. Yeah,

Joni:

Oh, so they say she passed the test. Not that she passed away. She passed the test is what they said. Okay.

Amanda:

Yeah, so that was Monday. So Wednesday was not moving And I had been in so many times that week and I like texted friends and they're like, they would have told you to be worried you know, the idea of like, lay down and drink some juice and then she did move that night, but it was definitely a different movement. and so then the next day on Thursday, it was my last day. Scheduled the growth check at MFM and I was going to be induced on Monday. Monday was air quote, 37 weeks. Otherwise, if I went into labor before that, they weren't going to stop it. And so my husband and I, thankfully he wasn't coming to a lot of appointments. He came with me to that one since it was my last check. That appointment was at 8 AM in the cities. so We went there and I had seen one tech there a lot and I loved her. She wasn't the like dismissive one. She was great. And she started scanning and like the baby wasn't moving on the screen, which I had seen a lot of ultrasounds. I knew what it was supposed to look like, you know, but I just was like in denial and she immediately left the room and was like, I have to get a doctor. My husband was like, what's wrong? I'm like, Well, the heart's not beating but like, oh, the screen is broken. that's, that's what's going on. So then a doctor came in, we'd never met and just said, there's no heartbeat.

Joni:

Uh.

Amanda:

door and left. And

Joni:

What?

Amanda:

yeah, and then, yeah. and then, the tech and the nurse that had done all my NSTs came in, ride with us, hugged us, talked with us. and they were so great. And it was, it's really strange. I didn't want to leave that room. Because then it felt like it was going to be real. Like it kind of felt like as long as I stayed in that room, I wasn't going to have to face it, which was really strange.

Joni:

Well, I think that makes sense. It's like, okay, now, now, what do I do? But there you can just grieve and, Ugh.

Amanda:

and be in denial still, I guess. eventually, so they told us, you know, like, you're going to have to go and deliver, we called the hospital, you'll go home, grab your stuff, and then they let us leave out a back door. Like I remember they let us go through their break room, which And also, like, now, years later, my mindset is, Oh, they didn't want any pregnant women in the waiting room to see us crying because our baby had died. It's kind of a double edged sword there. Like, I was thankful they gave us, like, that, you know, escape route. And also, it just reinforces the stigma of, loss and that you're not supposed to talk about it. You're supposed to hide it away. And we don't want to scare other pregnant women, which is what people always say when you talk about it. I'm going to pause there on that part of our story and actually, prior to my pregnancy with Junie, so I'm a photographer, I've always had it instilled in me to be a helper, give back, use your talents to give back. So, we got married in July of 2017 and that fall I decided to take a course through a loss organization to be a loss photographer, even though I had not experienced loss myself, which I think's just crazy no one gets involved in something so sad as baby loss unless they've experienced it or have been adjacent. I will mention, I did have a high school friend the year prior. Her son died, and I think that was kind of what, encouraged me to go that route. that year prior, I had actually participated in the wave of light. And I lit my candle on October 15th, which is the pregnancy and infant loss awareness day. but just, just wild, like then going into my pregnancy with Junie and still being so unaware of so much that I was connected to an organization and still not knowing about you know, movement monitoring and. I should have asked for more opinions, or I should have, you know, thought to get that due date typo corrected, or like, So,

Joni:

But I think, I mean, I feel like that would be all very typical. There is such a, It's kind of like looked down upon sometimes to advocate for yourself. It's like, well, you, you don't know as much as I do. And it's like, that is, that is like objectively true about this topic, but There are things I do know and I do have like this intuition and I am the one that's feeling the baby move. I feel like most people just kind of trust, like, if it's really important, they'll teach me about it. Um, and then I think especially because you had these, like, two different levels of

Amanda:

especially, yeah, and especially with that like high level of care and all these ultrasounds, it was kind of like, okay, guide me, you're the professionals, I'm entrusting you, you're the ones that have medical degrees, 100%, 100 percent that, and I will also throw out here, especially if you're, a person that has experienced loss, This is taking me years to, work on, but just remember that you did the best you could at the time with the information you had and that's always a, a hard thing with doing the stillbirth prevention advocacy that many of us do that you're constantly trying to prevent tragedy that could have been prevented for yourself. But like, I really think that's the only good that can come out of this is if I can help save others lives, which Junie has saved a life directly, which is huge. Yeah.

Joni:

That gives me chills. That's amazing. Yeah, I think, I think that would be hard because you're constantly kind of confronting, like, I, I I don't know. Yeah, like, I failed my child, but it's like, but I literally, there's no way, unless you had a time machine where you could go back and tell your old self, there's no way you would have

Amanda:

I try to, especially with the work I've been doing lately, I remind myself the system failed me and my child. The system may have failed you and your child. The system may have failed you and your patient.

Joni:

That's definitely what I'm hearing. Cause it would have been so easy for any one of these people, these touch points. Cause you had so many to be like, you're high risk. Yes, the baby's doing well right now, but we need to keep an eye on her. Tell you about kick counting. But you just like went through all of the wrong. Doors that led you to that

Amanda:

her pregnancy care was really like a game of telephone that went wrong. It was almost not great that I had so many people. Because it was like there was a lack of continuity of care so the ultrasound was done at the hospital, without my OB watching it and then a different doctor looks at the picture, signs off on it, that gets sent to the MFM. MFM's always looking at that sheet with a typo on it. Everyone's just a hot mess. So,

Joni:

yeah, the game of telephone is and how devastating that something as stupid as miscommunication can lead to a death.

Amanda:

Mm hmm. It's not how it should be. It's not how it should be. So continuing on with Junie's birthday is how I like to reference it. So my appointment that morning was at 8 a. m. We stopped at home. I remember I was actually in the space where my office is that I'm recording this. We were still working on the baby's room. So I had all of our baby stuff up in this space including my hospital bag and the baby's hospital bag. And I remembered. I was falling as I took out the nursing bras and the nursing tank, and I just grabbed the Clementine Swaddle, a few hats and bows that I had in the baby bag, I don't need pacifiers. I don't need the car seat, like, which is just absolutely broke me. And then we went to the hospital. Our local hospital. They handed me a puke bag because I sat there with my eyes closed trying not to puke I was so sick to my stomach about the, the fact that I had death within me, the fact that it was my own child dead me, and now I had to do this huge thing, like give birth. And it's such a big juxtaposition because they talk about how labor and delivery is the only happy wing of the hospital. And here I am welcoming death into this place that's supposed to hold life. So it's just all sorts of messed up, really. yeah, my OB was talking to us and I just sat there with my eyes closed, like, trying not to puke as she, like, told us how things would go, what the baby might look like, different options, the decisions we were going to have to make, all of that, which was just terrible. And It kind of felt like it took forever until they actually started the induction. They were so kind, like, don't get me wrong, but I remember the charge nurse was just, like, so sweet and soft spoken and she's like, you guys can go for a walk. You guys can come back. And I'm like, no, I want to do this right now. At that point, my biggest goal, I wanted to meet my baby. I knew that I would still get to do that. And I wanted to meet my baby. That was my big goal. So once I got induced, my husband had the terrible task, so terrible. He had to call everyone, all of our families. And because I had been having so many appointments, and like I said, I hadn't told a lot of people about all these appointments. Okay. This is my last one. So I told people about it. I was so excited. I was so like, it felt good to finally be able to say something because I'd been dealing with so much of this and in private, be like, it's my last appointment and I'm going to be induced, get excited, and so everybody knew about this appointment. And so all day I was getting texts. How did your appointment go? How did your appointment go? Especially, my mother in law because we would tell her about appointments. This was first grandchild, she was so excited to be a grandma or nana. And we didn't respond, I didn't text her back because I didn't know what to say. Like, no, it went bad, like, but I didn't want to say that over text. so that was absolutely awful listening to my husband. I have to call our family, I was getting, so I drive an orange car, and friends saw that in the hospital parking lot, and so I was getting Snapchat of, you're going to have a baby today, you're going to be a mom today. One of my friends, I didn't respond, so then she started calling me, and she left me, like, the happiest voicemail, like, You know, all these messages of like, can't wait to meet the baby and stuff like that, obviously no one knew, so it's not a fault of them, but it was such a stab to the heart of already telling me what I wasn't going to get to do, you know? And then just really feeling like that failure to everyone of like, well, you're not going to get to meet the baby,

Joni:

I think it also shows that no one expects it,

Amanda:

Especially not at full term, in the months following and even still, when I tell people that Junie died and was stillborn and I, so I have gotten used to saying full term because I found out people expect a stillborn baby to only be like 20 weeks. And then I show them a picture and they're like, Oh my gosh, she's a normal baby. I'm like, yeah. So she was born Thursday, August 9th, 2018 at 7 41 PM. And when she came out quiet, feel her birth time is kind of sacred or spiritual in a way because it was like, she actually has died. that was like this confirmation because the whole time I was in labor, I was I think my husband and I still thought, like, there's still hope, and the machine is broken. It's interesting, now that I've heard so many stories, they didn't, like, double check at the hospital, but also, I had been at MFM with level 2 ultrasound, and so it does kind of make sense, I think that played into holding some hope of, like, oh, she'll be okay, they were wrong, And so, you know, months later, we did autopsy, we had a placental, report done, things like that. Everything shows she died within 24 hours of being born, likely 12 hours prior to her birth. Her appointment was at 8 a. m. and she was born at 7. 41 p. m., she was so close. We were so close.

Joni:

oh, that's

Amanda:

that is like, the biggest blessing and curse because many people see her photo and think she is just a newborn sleeping. Because newborns sleep, you know? Because she didn't have like, all the peeling skin, She wasn't falling apart. And I can even tell, I don't know if other people can, but I can tell from photos from when she was first born, she had a little bit of muscle tone still, you know, and by the next day, you could just tell things had changed, yeah. so after she was born, our families came in to meet her, our parents and siblings um, and then stayed the night at the hospital with her, and I think this is when my dark humor started, because I joked with the nurse, because I slept in the hospital bed, we just stayed in the labor room the whole time, and I put Junie on the bed with me, and I'm like, we're taking ruminating to a whole new level, no worries with suffocation, and I think the nurse was like, eugh, like, do I laugh? Like, Yeah, yeah, and I was like, nope, if you don't laugh you'll cry. So that's one of my, my coping mechanisms. Um, The next day we had our family come back. We did a little religious y, dedication ceremony that was important to our families. We were just like, whatever. I was okay. I kind of wanted to spend a little more time with her and my husband.

Joni:

Did they put her in like a saline bath when you

Amanda:

No, cuz, no, cuz she was so as a photographer, I have done some saline baths for like, more like 20, 21 weekers, but not, not a full term.

Joni:

Okay.

Amanda:

They bathed her after she was born. We were too scared to do it ourselves just to like, get all the vernix and meconium off of her because she pooped after she died in me. yeah. So our families came and then they left and then we were getting ready to go, which was like the worst possible thing. The time in the hospital with her ourselves, it, it was such a, like, push and pull of, like, I want to hurry up and get this really awful part of leaving without her over with. And then it was also, I don't ever want this to be over with because this is the only time I'm ever going to get. And especially having that training already, I think that was even more, thrilled into me. Like, I already knew that, this leaving part was going to suck and that we wouldn't get this time back. I, talked myself out of stuff. I think I remember, like, wanting to bathe her, but, like, being scared to, but also knowing, like, this would be my only chance, so, why didn't I, or, like, I thought about taking a video, and then I was like, no, that's silly, there was a lot of feeling of, this outside pressure of, like, what are people gonna think of the things we did, or what am I supposed to do, even though there's, no rulebook for this. So I still, even with all that background, I left the hospital with a lot of regret of, I never rocked her in the rocking chair, I didn't give her a bath, I didn't change her diaper, I asked for them to put a diaper on her because that just felt bad. weird to not, I don't know, and honestly, like when a baby dies, they leak a little bit leaks out of their butt still. and so we put a diaper on her and now I wish I would have just changed it. This is my first kid just to have that experience. Just things like that. And so now when I go to help families now, if their baby has died, I try to help them leave with that least amount of regret and, you know, encourage them to do these things, even though it feels.

Joni:

Be like a positive pressure, instead of feeling like someone might judge me. Being like, no, like, this, not, not enjoy, but like, savor, I guess, this time.

Amanda:

a really good word. Yeah. I'm

Joni:

Did you end up having someone come in and take photos then for you? Like

Amanda:

We did.

Joni:

that you were connected?

Amanda:

nope. not from them. Um, some photographers Have a lot of photographer friends. with Junie measuring small and with being induced early at 37 weeks, They were talking about the possibility of NICU time. So I had a photographer friend penciled in of like, I will be induced on this day if I don't go into labor first. I would like you to come do hospital photos, but like, she might be in the NICU. So I'll just keep you posted on what that's going to look like. And so when Junia died, I texted her and was like, would you be okay to do photos today? And I didn't, I didn't. I was like, would you be available? And then of course, yay, I'm so excited. And I was like, well, yeah, so she was able to come, which was really, really helpful. It was actually kind of nice that she wasn't this trained loss photographer. And then especially with Junie being full term and so close, people have told me this, her photos look like normal newborn hospital photos. Which I love. I don't think that babies that have died have to have this look or, just because they've died doesn't mean you have to do anything weird or different, like, you don't have to, put them in this ugly basket because they died, like, no, you can hold them, like, that's what you get to do, you still get to do, those things. And I like to tell families to, like, do whatever feels the least worse because none of the decisions you're making at that time are good. I'm, like, getting an epidural placed and they're asking me if we want to do cremation or burial. Like, What a messed up juxtaposition of things. And so we decided to cremate Juni. and the nurse was like, Oh, good. Like, no, this is terrible. Like, this Is not good. And so I gave myself, the thought of, do what's least worst. Like, this is the least worst choice for us right now. And that's what we did.

Joni:

And then did you have, like a memorial for her, or? Yeah.

Amanda:

it was kind of twofold. I didn't want people to have the memory of Junie leave them feeling sad. And it feels like funerals are just that. the other part is I didn't want a whole lot of people to see me. I didn't want to have to fake anything. And I know I could have just shown up how I was, but I did not like that. I had a lot of friends visit, which I really appreciated because, you know, people come and meet the baby usually. And so I was so glad that I had friends still be like, we're gonna stop by if that's okay with you. And I was so glad to do that, kind of one on one, less, like, performative thing. Now, you know, six years later, and having connected with so many moms that have done so many wonderful, events for their babies, I kind of wish I would have felt empowered too. I wish I would have, realized I could have made it a celebration of her life, So much of what was given to us, through the funeral home or condolence cards and things like that felt more appropriate for when my grandma dies than when my baby had died. so many people just wanted to dismiss the experience and, like, I felt like a badass. Like, I just gave birth. even though she had died, I still felt so proud of myself and I wanted to, like, share her positively. Does that make sense? I don't know if it can make sense to anyone that hasn't experienced it, but when so many people just, like, we got flowers that said, sorry for your loss, and I just craved someone to put, like, Junie is so loved!, like, you can still celebrate some people are like, oh, you're celebrating death. No, we're not celebrating death, but we're still celebrating that I am a mom and I gave birth. And she's still my daughter, and just because she dies doesn't negate that fact. I even had, people be like, Oh, you'll be a good mom someday, and I was like, No, I already am! Like, if anything, going through this terrible tragic situation and having to give birth to the baby I wasn't gonna get to keep me even more of a mom.

Joni:

Yeah. Yeah. I think it makes sense that you said I, um, that people had, celebrations of life. I feel like it would just be hard to be in that spot of, like, Celebration when you're heartbroken.

Amanda:

Mm hmm.

Joni:

But I see what you're saying. Like you, you want to celebrate her, but you also are just missing her. Yeah. And mourning. And so it, like you, you use the word juxtaposition a lot and it's like all of it seems like such a juxtaposition of like, I'm feeling these multiple things. I have so much love to give, but I don't have a person to give it to, I guess, in the same way that I

Amanda:

Yeah. A quote I heard soon after she died was grief is just love with nowhere to go. And I really, I've clung to that, especially being a first time mom without a baby to mother, kind of that space, you know, I had all this time and I had all this energy ish after she died that I thought, I was going to be devoting to nursing a baby and dealing with. Diapers and nap schedules and then all of a sudden it was like everything changed overnight and nothing changed overnight at the same time. And the fact that so much didn't change is what hurt the most because it was supposed to change. That space, is really, where I started sharing on Instagram. Because I found out, you know, one, people thought babies were only stillborn at like 20 weeks. Two, people only shared photos of babies that died in black and white. And I love color. I don't do much black and white. And I just wanted to share her photos. I wanted to be a proud mom sharing this cute baby. So that's kind of where I started sharing stuff on Instagram. And then realizing that no one knew how to navigate this. And everybody like in my life was just defaulting to how we mourn an old person. And just, generations of the way we've mourned babies that have died. And that just did not jive with the way I wanted to grieve. And so I started using it kind of as a platform of like, educating people on like, yeah, you know, this is what we've done for years, but this might not be actually serving these moms like myself. And just sharing her photos and I remember when I first started posting Juni's photos, I started tagging the hospital as the location, because then her photos would show up alongside all these other newborns, and I just wanted that validation. And I'm also like, oh gosh, someone was probably posting their living newborn and being like, oh god,

Joni:

You associate orange with, with Junie? Tell me about that.

Amanda:

I do. I have loved Orange for a long time, though. It was a thing far before Junie. I had orange carpet in my bedroom as a child. Um, our house was built in like the seventies. I was the, I was the second kid, the middle kid. And so when I was born, I got like the den of the previous owners and it had this awful orange carpeting. It was like plastic. I don't think there was a padding underneath. If you split across it, you've got a rug burn. like awful. And my walls were painted light pink and I remember like the day we got rid of the carpet and I thought like, I should cut out a piece of this. Like it's gonna mean something someday. And then I did. I'm like, gross, like yuck. And then I got blue carpet. I hate blue now. And I love orange and pink. So when I was pregnant, I didn't want to find out the gender. And I was like, well, we're going to paint the room orange. Cause I didn't have an orange room in my house. So right before I got pregnant, actually, I got this amazing Clementine purse from Kate Spade and it had this Clementine motif on it. And I was like, Oh my gosh, this is the cutest thing. And then a friend sent me a link to this Clementine swaddle from Clementine kids. And I'm like, Oh my gosh, I love this. Like it's orange. Like they had crib sheets. I was like, that's what we're going with. I wanted it to be cute for me, because I was gonna enjoy it, so, that's how I looked at it. But my baby shower, one of my friends got me the Clementine swaddle that ended up becoming Junie's. And so then, when we found out she died, and we stopped home, Onesies and stuff that I had packed just didn't feel like dignified enough for a baby that died. I don't know, like, it was, it was kind of strange to think about. So, I grabbed the swaddle, like, I can still wrap this baby in a blanket. And then hats and bows. Then we wrapped her in that blanket and that was another juxtaposition in this, lost community that so many people, you know, just have their babies in black and white and, wrap them in, like, Really sterile blankets or all this ugly crocheted stuff. No offense to anyone who's made this nice crocheted stuff But like they brought me like when we were after Jeannie was born. They had brought me this crocheted purple outfit I don't like purple but it felt like I had to just like accept it because they were being so nice to Give us all those help and whatever and so we wrapped her in the clementine blanket And so that's kind of where the orange has stuck Also, I, so I just love orange. At one point, I had two orange cars. I only have one orange one right now. It's an orange Beetle. But yeah, like orange is my thing and I just brainwashed it onto my children as someone, as a troll was on Instagram called me once. But like, that's what you do as a parent. You put your own likes on your children until they have an opinion. I need to tell everyone that Coral, my middle child, her favorite color is yellow. She will very proudly tell you her favorite color is yellow. She has decided that Jersey's color is pink, and Mommy's color is orange, and Junie's color is orange. So, I'm okay with it. Both colors complement each

Joni:

Yeah, that's really cute. so before we talk about how you kind of got involved with the advocacy work, what do you feel like was helpful during that time immediately after you lost Junie? cause you were saying we treat loss of a baby similar to loss of an older person. What did people do that was helpful or what do you wish people would have done? What, what was not helpful. I'm just curious.

Amanda:

few things that stood out to me was the cards that I got, cause we got of pile of cards. Um, and one of my friends, another photographer, he gave me a happy birthday card for Junie. Thanks for having me. And I loved that so much because it was, like, the only one that was, like, really positive and, like, it was, like, baby themed and so it, you know, not all this, like, ugly antique calligraphy crap, like, it was, like, it felt right for her, if that makes sense. And then another friend, sent me a card that was, it was, I don't remember the shop name, but she's got all these kind of, like, dark humor cards. It was like joking about like how God did pretty good with like waterfalls and pandas or something, but like Not this. It was funny. I, I have it saved in a box somewhere, but those ones stood out to me. So she looked so great. She looked so alive. Before we posted on social media and ruined everyone's weekend because Junior's born Thursday, we came home Friday. We posted Friday at like 9 PM on Facebook, ruined everyone's weekend. But we started texting people cause we wanted people to hear the news from us rather than anyone else. We both, sent this group text to, kind of our group of friends, and so I typed the words, and I think Mitch, my husband, baby daddy, sent the picture, and one of our friends didn't read it all the way,

Joni:

Oh no.

Amanda:

because we were, like, we went with, wording, now I feel a little conflicted about it, but we were telling people she was born into heaven, and, like, acknowledging she was still born,

Joni:

Yeah.

Amanda:

She was. Like, I gave birth. Like, some people could not believe that I was bleeding for six weeks. Like, no, I, I still had to give birth, Anyways, in this group text we sent, one of our friends didn't read it all the way. and wrote back, congrats, she's beautiful. It's like the group. And then everybody was starting to say like, so sorry, oh my gosh, Then she texted us, just my husband and I, and was like, well, you'd be happy to know our, four year old now knows how to curse because I loudly said that out loud. When I actually read your message, and then felt like a jerk for responding the way I did, and I was like, no, I, like, honestly, I wanted people to tell me congrats, I, I felt that pride, I wanted to be congratulated on her, of course it's not the same happy woohoo, and so if you do have someone in your life that has gone through this, it is perfectly acceptable, of course depending on the person, but just say like, Congrats on your juniper. She is beautiful. I wish she could stay in your arms. I wish she was still in your arms. It's okay to like, say that. And, so many moms have said I didn't realize I was missing out on that until you told me. There was a few people that, situations like that happened that people said congrats, not really realizing it. And not that we were like, super secretive. But it's not like our baby died. We didn't, you know, say that. Another very helpful thing was a friend, got a memory bear made, an angel bear made with Junie's stats on it. And before I realized that's what it was for, she texted me and asked me about Junie's birth and how much she weighed and what her height was. And what time she was born at, and no one had asked me those very normal mom questions. Or just when people would say, let me see her photo, or will you share her photo, or what was your induction like? Just really normalizing it, because I still have this whole birth story.

Joni:

Yeah.

Amanda:

things like that were very helpful. I got a lot of really, beautiful, sentimental jewelry, which I appreciated, a lot of candles, things like that, but also for quite some time, they were all on our dining room table and I resented them because I wanted my table to be littered with diapers and bottles and not necklaces, it was really hard for me to take care of myself for a while because I didn't want to, I wanted to be just taking care of my baby, like, it felt like betraying Junie by taking care of myself and people would tell me to, like, you know, pour myself into hobbies and stuff like that, and I did not want to. So, I also got some books. I did not want to read them, the books for quite some time because it kind of felt like here I was accepting this title as a bereaved mother and that just felt so gross to say. and then I did finally start reading them and I was grateful I did. I felt very seen and validated. I know you said what was helpful. I'm gonna share something that wasn't helpful. Was people being a little, like, overly eager to check in, and this is people that hadn't experienced what I had experienced. I think it's very different when you've been in a more similar boat, but, when people, sent a book and said, Oh, it was on Amazon's top list for bereaved moms or something, like, did you read it? Did you read it? Did you read it? Like, take that pressure off, because that just felt yucky. It was like, What do you know about what I'm dealing with? Like, you don't, so, now I feel like I'm failing you again. I didn't read that book because I didn't want to, but you can't explain that to someone because you're supposed to just have this, open hands of, like, give me whatever help you can because this is really tragic. And it was, like, no, maybe I don't want this kind of homework, I guess. I don't know

Joni:

Yeah. No, I think that, it's like, uh, when we talk about grief, in the therapy world, eventually you make meaning of that grief, and that's kind of what helps you,

Amanda:

But no one else can do it for

Joni:

yes. And so I think. I think that's what people, they're, they think it's helpful, they're trying to do, like, oh, you can read this book, and this will help you make meaning out of it. Yes. And I think that's where it gets, like, confused a lot of the

Amanda:

yeah, and Maybe this was just me and dealing, but it kind of felt like people just wanted to like check this off their list of like, oh, Amanda went through this really hard thing. I'm gonna do this thing to help her. And now like that's checked off my list. I can set that aside. I don't have to think about how terrible this was for her. Like I helped, or like, it felt like some people that like showed up to see us, wanted to know for themselves. We were okay and like we, we were anything but okay. And we will never be okay in that sense. But it felt like they had to see that we were still standing. And like eating and using the bathroom. I don't know. And then they were just like, okay, now I can go on with my life. I know my friend is okay when I, when I wasn't. So, another thing that was incredibly helpful and this is going to sound so silly, but when my friend came over, she hasn't had kids, anything like that. She was a very close friend, during my pregnancy. And she was offering do you want to do this? Do you want to do that? And I mean, this was probably two weeks after Junie was born, and I was just like, no, I really don't want to do anything tonight, and that didn't deter her. And I said, honestly, will you just come over? I don't want to be by myself. And I just want to sit in the baby's room. And she came, and we just sat in silence in Junie's room. She didn't try to fill that silence or try to, like, say stupid stuff to make herself feel better, and that, Was probably one of the most helpful days in that early grief that she didn't ask. How are you like? Do not ask a newly grieving parent. How are you? You're never gonna be good If you do want to check in you can ask that but be specific. How are you this morning? How was your lunch things like that are okay But if you just say how are you even still if someone asked me, how are you? terrible. will always be happy and terrible at the same time.

Joni:

Yeah.

Amanda:

Yeah,

Joni:

that's really helpful advice, and really impressive your friend could sit with you in silence.

Amanda:

Yes.

Joni:

neat. That's, yeah, very special. It's hard for most of us to do that. Okay, well thank you for sharing all of that, and I, I think it's helpful too, what you just said, being like, yeah, I never will not be thinking about her. I had a conversation with my, It's my husband's grandma, so she's in her 80s and she lost her first child.

Amanda:

You know that baby's name?

Joni:

Karen, and I once asked her, how often do you think about her? She's like, oh, every day. And I'm like, wow. 60 years later, and that's kind of what I figured. But I was just like, wow, you have this weight on you that no one really recognizes unless I think you, you know, you're doing this beautiful job of talking about her a lot. So people can talk about her. but I just, I was, uh, I don't know. I wasn't, I think I just respected like, oh my gosh, this is a huge part of your heart that

Amanda:

Mm hmm.

Joni:

healed and will never heal until. For her, like, till she meets her. well, she's alive.

Amanda:

and me and other moms in this community often talk about how many people think the loss of a baby is this, like, one time or one day type of event of, like, we only think of them on their birthday or their death day, that is the only time of the year we think about them, that's the only time they're, like, applicable, and it's, like, no, like, Uni is in every single one of my thoughts at every time of every day, like no matter what. And that's why I think the death of a child, especially the death of a child at birth is so confusing and complicated. And why it like ekes into every part of your life is people ask me how many kids I have. And that small talk is suddenly like my biggest life tragedy. And for so long, no one has talked about the death of a child. You said your grandma lost Karen, I would imagine that her experience has been vastly different than mine has, and even in the past almost years since I've experienced it, I've seen changes in how grieving moms are supported for the better, positive changes. And I feel like the work that I'm doing along with so many others in this community are making that positive wave of change and making it okay to talk about our babies because, like, back, back in the day, and really back in the day wasn't that long ago, if you found out a baby died, they would get the baby out either C section or, you know, knock you out and induce you and you never see your baby. You wouldn't get to see or hold your baby and you probably know in the work you've done that actually seeing and holding your baby and connecting with your baby is insanely beneficial for maternal mental health and paternal health. So I'm so glad that that's changed.

Joni:

It is incredible. I mean, that's a hard word. It's still devastating, but I'm glad that people are able to share their life, their child's life with others instead of just having to kind of suffer for the rest of their lives in silence essentially.

Amanda:

Agreed.

Joni:

so tell me about stillbirth prevention because honestly when I first talked, I talked with you and some other people from Measure the Placenta. It was really the first time I heard like, oh, you can prevent stillbirth. I thought it was just this. devastating thing that happens that no one could have predicted. So tell me about, how you got involved in it. And then what types of things do you want parents to know to prevent a stillbirth?

Amanda:

Sure. So when I was pregnant with my second daughter, Coral, so this was about nine months or so after Junie died, I connected with Elijah's mom and, we were participating in a parent panel educating nurses about supporting lost families. And we were in the car on the way to Faith Lodge, which is where the parent panel is happening, it's a retreat, in Wisconsin. And as one does, we start talking about our babies, and Elijah was still born on his due date, a month before Juniper. She had three living children prior to Elijah, so her story's a little different in that way, so she starts telling me about Elijah, and then I started telling her about Junie. And I mentioned placental insufficiency and like light bulbs were going off in her brain and, she was like, well, Elijah died because he had a small placenta and I was like, what? I never heard that, but like, I was like, that would make sense for Junie. She was small, and I remember the doctor saying her placenta was small. And so, Anne's telling me about this researcher named Dr. Harvey Kleinman at Yale University, who is a placental pathologist. And that she sent Elijah's records, and they actually take like cuts of the placenta when the baby has died. And keep them on file, in the hospital. she actually sent that to Dr. Kleiman, who then looked at it under a microscope, and was able to give her so much more information on her son's death. And I was just like, oh my gosh, like, why has this not been given to me? After Junie died, I, pushed to have appointments, because, I have all these checks with MFM, all these checks with my OB. I was like, oh, for sure, like, Now she died so unexpectedly, we're gonna talk about what happened and what we can do to prevent it because I want to have my kids. No, like, they were just like, well, this was unfortunate, it really just kind of felt like I was hitting dead ends, even though I'm like reading your autopsy and whatever. So, Anne tells me about this researcher and so she's encouraging me to send Juni's records to him so I did and Juni's placenta was small. Which was so interesting to find out because our hospital had done an initial pathology and they basically put nothing was concerning as placenta. And then I sent it to Dr. Kleinman and I find out her placenta was 0. 1 percentile for size. When you have a kid alive and you take them to the pediatrician, if at any point they're under 10th percent, it's like, oh my gosh, alarm bells. Here's this critical organ, my baby is struggling, my baby's not growing well, and then her placenta's this tiny, and she was only the first percentile of her size, and that's why she lived to thirty eight weeks, is because her body slowed down so much to match that placenta struggling. Finding this out, even more encouraged me that her death was preventable, that if I would have known about those kick counts that day before, we could have got her out alive. The fact that Junie's death was preventable is what fuels me up because no one else is going to be doing this work. No one is pregnant and is like, I'm going to look into stillbirth prevention, you don't do that. and that's why like I mentioned all of that grief stuff and the exiting through the break room because there's such a disconnect when it comes to pregnancy care and stillbirth prevention because no one wants to talk about it, no one wants to scare pregnant women. And so it's like, well, if, those of us that are fueled up to do it aren't doing the work, no one's going to do it. So it was life changing connecting with Elijah's mom and getting my info sent to Dr. Kleiman. And then especially since I was like halfway through my subsequent pregnancy, I'm like so scared it was going to happen again. So many moms lose their babies during a pregnancy and they had very few checks. And for me, it was like the opposite experience, that Juni shouldn't have died because of the care I was under. Junie shouldn't have died considering I was already connected to a national stillbirth organization that's local to me. I should have been educated. I should have been aware of all these things. So that just, just added to it. And so then when I found out that Junie had a small placenta, I was pregnant again. It was like, yay, there's something more I can do in this pregnancy care that we did not do previously. And then it made me think back to, oh, when Junie was small, we said measure the placenta and they Couldn't and didn't. So I find out that Dr. Kleiman, developed this technique called EPV or estimated placental volume, and it is a simple measurement. You take three measurements of the placenta on any standard ultrasound, and you can estimate the size or the volume of the placenta. So I was like, Well, I have to get this placenta measured. I need to know if this baby has a good size placenta, because you know, we only learned about Junie after she had died. So, of course, I, like, get all excited and I take this info to my MFM, which was the same MFM that, tracked Sunni's pregnancy. And they're like, no, we don't need to do that. it was so defeating this was a tool that could have saved my daughter's life. And then

Joni:

they're just like, no, we're

Amanda:

Yeah.

Joni:

mm

Amanda:

sometimes laugh at me, but, I was local to the Stillbirth Summit happening in 2019 when I was pregnant with my second coral. And And Dr. Klyman was presenting there, this was about a month after I met Elijah's mom, and so at lunchtime, I'm like sitting by Dr. Klyman, and he's sitting by another MFM that's local, and so I was then able a few weeks after that, I was able to go see her and have her measure my baby's placenta ultrasound. So I was seeing an OB done for that pregnancy, but I was still seeing the same MFM. So with my new OB, I had told her, early on in the pregnancy, take the word reassurance out of your vocab, because, I already had twice week ultrasounds, and my baby still died at full term. But so, like, getting, her placenta measured felt reassuring to see that her placenta was, the appropriate size for the growth of the baby. Because, It's not just the size of the placenta, like a small placenta alone can be a risk factor for stillbirth, but it's also important to look at the ratio of the size of the placenta to the size of the baby.

Joni:

So this MFM had just been educated that EPV is something that you can measure and that it can be predictive of stillbirth if it's low,

Amanda:

Yep.

Joni:

and so she was willing, or he was willing to do it.

Amanda:

Yeah. this MFM was attending the stillbirth summit, which, shows that she was trying to go that step further and look into, so it was hosted by that local organization.

Joni:

Oh, okay.

Amanda:

just to, like, discuss all things about stillbirth,

Joni:

you were saying silver summit. Man, my hearing

Amanda:

Stillbirth That's funny. every every time I voice to text, Siri thinks I say silver too, so,

Joni:

Oh, funny.

Amanda:

which I'm also like, hmm, does Siri have stillbirth in her vocabulary? My creative brain is always thinking about, breaking down these norms and like, figuring out how to get stillbirth existing in all these spaces or to just be talked about because it's been so like fun. So yeah, during that second pregnancy when I learned that info, I went to this other MFM. I got that placenta measured. It was, it was so cool, seriously, that was the coolest, appointment I had had. And it was really special because, elijah's mom came with me to that ultrasound. So that was really special. So then Coral was born and I had in my birth plan for her, to have the placenta weighed and photographed and all of that. Which is, it's really wild. just in normal pregnancies and deliveries, they don't look at the placenta like at all. just on a normal ultrasound, they look at where the cord is inserted. generally, and they look at the location of the placenta, the biggest thing is to make sure it's not covering the cervix, because if it is, then you have to do a c section to deliver the baby. But that is about all they look at. They don't look at the size. They don't really look at anything other than that, cord doppler to, do anything checking on the function of this critical organ. So yeah, Anne, Elijah's mom, myself, a few other small placenta loss mom came together and started this organization called Measure the Placenta. And we are just a team of mostly lost moms and some other supporters. We've gotten some small placenta survivor moms on board recently. Which they are like, stillbirth near misses. Like stillbirth saves, so we're an all volunteer organization. We are working to get the placenta measured during pregnancy as a standard of care. For So right now we just focus on spreading awareness, that like the placenta is not measured on ultrasound. We spread awareness that when your baby's born, they don't measure the placenta even then. They just discard it as medical waste. The placenta is the only temporary organ grown by the human body. Each pregnancy you grow a new placenta for, and the placenta belongs to the baby and not to the mom. So if you say my placenta, it's actually incorrect, it's your baby's placenta. And especially if you think about, like, if you have multiple kids, if you kept saying my placenta, like, which one,

Joni:

Yeah. Your placenta was when you were a baby.

Amanda:

right, right, Right now the placental measuring during pregnancy is not a standard of care, so we are working, Kind of on a very multifaceted approach of spreading awareness to pregnant patients. A lot of them are lost moms Because that's how they found our info. But like I said We do not want this information only geared at people that have already lost a baby because that that doesn't make sense We want to prevent the information I still wouldn't gotten it with Junie kind of tying this back to Juni's story. So yes, we found out after she had died that her placenta was very small. How EPV could have changed the course of my pregnancy care, especially with that due date confusion, if we had measured her placenta, known it was small, that would have just been another like check mark on my like list of complications, list of risk factors of like preeclampsia, fetal growth restriction. So small placenta was on the list As well as all these other things, it would have just started tipping the scales of like, okay, baby needs to come out now, versus keep baby in. And so that's how that could have changed Junie's pregnancy and Junie's life. And then also oh, she has a small placenta. We need to make sure you know to track her movements. She's already at risk because of this small organ. This is important to be tracking even though you have all these appointments and it's it's not a like we want to scare you it should be a we want to empower you to help you have the best pregnancy outcome you know knowledge is power and that's why knowing the size of the placenta is such an important thing it's like I said, we're spreading awareness to pregnant patients We're also petitioning ACOG because so many doctors for fear of liability will not do something that ACOG doesn't tell them to do, It's really complicated because ACOG is basically a lobbying group for the doctors that pay them. And so they basically exist so that doctors don't get sued, but yet doctors won't do more care because ACOG doesn't tell them to. So like, Really, they're protecting doctors and not the patients, which really doesn't make sense if you look at like, yes, yes, it's very, very, complicated. I think we've sent over 6, 000 letters to ACOG and to other state officials by this point. I think our letter campaign has been going for like two and a half. years now. I have sent mine in orange envelopes, and I've stamped Junie's handprint on the

Joni:

Oh, aw,

Amanda:

I think the last round of letters I sent, I used Day of the Dead stickers be hilarious, as one does. So I run the social media with, Rowan's mom, Erica. I'm not the science person. That would be Ann, Elijah's mom. So we're a small but mighty team. We have, monthly meetings online. A few of us that are local to each other try to meet up. We have all participated, in the various stillbirth prevention legislations at the, federal level, a few of us have gone to D. C. to support those efforts because those things will support the work we're doing. We're aligned with, some of the groups like Push for Empowered Pregnancy and Count the Kicks and Healthy Birthday, and so we are always sharing just the importance of advocating for yourself and feeling empowered. to speak up. And then also about fetal movement monitoring.

Joni:

Yeah. Can I ask, so if they had a provider, someone has a provider who is not familiar with measuring estimated placental volume, is there like a document that they could give them of like, these are the three measurements you need. And then this is the calculation, like there's like a calculator. Okay. Yeah.

Amanda:

Yeah, so on both our website, measuretheplacenta. org, and on Dr. Kleiman's, Yale EPV website, there are guides, there are videos, there's all this science y stuff about, what angle you hold the probe at, what field of view you use to measure it. All of the stuff, you know, like weeks and whatever. And then there is a free, app for both Apple and Android. It's called Merwin's EPV Calculator. So if you go ahead and download that, then you plug in those measurements there and a calculation is ran and then it will tell you the estimated percentile volume of that placenta. Because you just look at the number of a placenta, you're like, cool, I don't know what that means. Cool. then it can kind of tell you based on like normative curves of what size they would expect that placenta to be based on that gestational age of the baby. And also to point out, this app can be used after the fact, after the baby is born as well. There's a spot for that in the app that you can plug in, baby's birth weight and what gestational age they were born at, and then it will calculate. That, percentile, and it also does the ratio, like I said, the size of the placenta to the baby ratio is important to look at as well as the size alone, because you would not want to put like a, like a lawnmower engine to pull a semi across the country. Likewise, you would not want a semi engine for a little lawnmower because that is a mismatch of size. So we do talk a lot about small placenta as that is. a more common thing that we have seen, in studies, but a large placenta and a smaller baby is also a risk factor for silverth and other issues.

Joni:

Okay. That's so helpful and really cool that we have that. I'm guessing they're just putting out more and more research to support this. So hopefully eventually, ACOG adopts it. What week do you guys want that to be checked at?

Amanda:

so generally we, tell parents to advocate for it at the anatomy scan, which is usually done around 20 weeks. This is already an in depth ultrasound. And so adding, the 32nd Ask is not a big deal, with my third pregnancy, Jersey, they, at my MFM, I ended up going to a new MFM for my third, and they measured her placenta size on every ultrasound. I was having some concerns, around 24 weeks with having extra fluid, and so they had me come in every two weeks, and. They would check her amniotic fluid level and then they would measure her placenta. Like it's that easy. it's so simple. So super cool. So we do tell people advocate for it at your anatomy scan. You can either, send the info to your provider, like on my chart or by email so that it's documented. We also tell people that if they do make this request and they get pushback from their provider, which is Pretty typical because it is this new thing. To ask that their request and their refusal be documented. Because sometimes that's enough push for them to be like, Oh, I'm just going to measure this thing.

Joni:

Yeah. Yeah.

Amanda:

it's not invasive, it's not an MRI, it's on a regular ultrasound. You can print out the PDFs to bring to your appointment, or you can send the info on MyChart or email whichever way works for you to get that info in front of your provider.

Joni:

Okay. I'll definitely link all of these different things and if there's anything specific you want me to link, I'm happy to do that.

Amanda:

Something, specific I want to share, though, from ACOG is that a few years ago they put out a bulletin, which is kind of their, like, practice guidelines to providers, that if a family that had experienced a previous stillbirth, their provider is allowed to induce them without a medical reason up to 37 weeks or beyond, rather than waiting for that 39 week mark. just to help with anxiety and other things. So that is something good I'll have to have you here for, any lost families.

Joni:

That'd be amazing. thank you so much.

Amanda:

Thank you for having me on, for sharing Measure the Placenta.

Joni:

Juni with us.

Amanda:

Of course.

Welcome to the Sad Moms Club. Welcome to the Sad Moms Club. Welcome to the Sad Moms Club.

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Joni Lybbert

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