Episode #12: We Need to Start Talking About Stillbirth

This episode highlights the lived experiences of families who have experienced a stillbirth. You’ll hear from Jasmine Abraham and Nneka Hall, who share their personal experiences after Jasmine’s son Qasem and Nneka’s daughter Annaya were born still. You’ll also hear from Rose Horton, a nurse and Executive Director of Women and Infant Services at Emory Decatur Hospital who also created #NotOnMyWatch. You’ll learn about what stillbirth is and what we know about risk factors and prevention. The episode also discusses the short- and long-term impacts of the loss of a baby and what supports and systems-levels changes are needed.

Content warning: This episode is about stillbirth and shares personal stories about pregnancy & infant loss. It discusses mental health challenges and mentions suicide. Much of the episode will be emotionally challenging and content shared in the episode could bring up past traumatic experiences. If you or someone you know is experiencing suicidal thoughts or a crisis, please dial 988 immediately to call the Suicide Prevention Lifeline or text HOME to the Crisis Text Line at 741741. The National Maternal Mental Health Hotline provides support before, during, and after pregnancy. Call or text 1-833-9-HELP4MOMS (1-833-943-5746). TTY users can use a preferred relay service or dial 711 and then 988 or 1-833-943-5746. Both services are free, confidential, and available 24/7.

Resources:

· Count the Kicks
Count the Kicks (CTK) is an evidence-based stillbirth prevention program and an AMCHP Best Practice. In the first 10 years of their campaign in Iowa (2008-2018), the state's stillbirth rate went down 32% while rates in the rest of the country remained relatively stagnant. Visit their website to learn how you can bring CTK to your state by becoming an expansion state.

· Still Birthday
· Now I Lay Me Down to Sleep
· Quietly United In Loss Together founded by Nneka Hall (www.annaya.org)
· Share Pregnancy & Infant Loss Support – find support in your state
· Return to Zero Hope
· Still Standing Magazine
· Pregnancy After Loss Support
· Star Legacy Foundation

Legislation:

· Raising the Volume - Ending the Silent Epidemic of Stillbirth congressional briefing
· National Stillbirth Prevention Day
· Stillbirth Health Improvement and Education for Autumn Act of 2022
· Maternal and Child Health Stillbirth Prevention Act of 2022

Common acronyms or terms you may hear in the loss community:

· Sunshine baby: baby born before a loss
· Angel baby: baby who has passed away
· Rainbow baby: baby born or conceived after a loss
· Heaven born: baby who was stillborn 
· Earth born: baby who was born alive
· PAIL: Pregnancy and infant loss
· PAL: Pregnancy after loss
· SIL: Sister/sista/sistah in loss

Transcript

Maura Leahy: 0:08

Welcome to MCH Bridges, where we lift up innovative ideas and inspiring stories from people in the maternal and child health field. My name is Maura Leahy. I'm a program manager and child and adolescent health at AMCHP and your MCH Bridges host. Before we get started, I'd like to mention that this episode is about stillbirth and shares personal stories about pregnancy and infant loss. It also discusses mental health challenges and mentions suicide. Much of the episode will be emotionally challenging and content shared in this episode could bring up past traumatic experiences for listeners who have experienced a pregnancy or infant loss or supported others through a loss. So please consider if you feel ready to listen to the episode. If you or someone you know is experiencing suicidal thoughts or a crisis, please call the Suicide and Crisis Lifeline by dialing 988. You can also call or text the National Maternal Mental Health hotline that provides support before, during, and after pregnancy. More information about these resources can be found in the show notes. One of my favorite TV shows is Call The Midwife. If you're not familiar with it, it's a show about the nuns and midwives of Nonnatus House in the Poplar District of London in the 1950s and 1960s that is based on the memoirs and real life experiences of a nurse and midwife. I think there are a couple reasons that I like the show. I feel like the characters are really relatable. There's also that natural overlap with the work that we do in the maternal and child health or MCH field that deal with topics that were major events in MCH history. For example, the show covers thalidomide a what was thought to be revolutionary drug for treating morning sickness, that was then discovered to be linked to birth defects. There are episodes dedicated to the invention of oral birth control and nitrous oxide, or laughing gas for pain relief during labor. A recent episode that was dedicated to measles vaccination had a lot of parallels to the challenges we've seen with covid vaccinations and parental or caregiver hesitancy for vaccinations. The show also doesn't shy away from difficult topics like unsafe abortions, racism, interpersonal violence, and substance use disorder. Because it is a historical show, there are topics that it covers that just don't happen or happen nearly as much anymore, diseases like typhoid and polio. Thinking about this though, it can be a little deceptive because there are definitely topics covered in the show that are still happening today, but because of general medical progress, we wouldn't think that something is still so prevalent. One of those topics is stillbirth, and that's what we're going to spend this episode talking about. In this episode, you'll be hearing from three people as they share their lived and professional experiences with stillbirth. We're going to hear first from Jasmine Abraham as she tells us all about her son Qasem.

Jasmine Abraham: 2:51

So my story begins in November of 2019 when my husband and I decided that we were gonna start trying for a family. Thankfully, on the first try, we were able to get pregnant with our son, and so we went through the first trimester. Everything was perfectly fine. Second trimester went great. The anatomy scan was perfect, everything was trending well, and then around six months, the pandemic hit, and this was March of 2020.

Maura Leahy: 3:20

We all remember what it was like at the beginning of the Covid pandemic, quarantining at home, only leaving your home for essentials, not seeing friends or family in person. Jasmine's provider told her she was a low-risk pregnancy and could opt to do every other visit virtually, like many expectant parents. Jasmine has a bunch of different baby apps downloaded and she came to one of her in-person third trimester visits with some specific questions because her apps were all telling her it was time to start counting kicks.

Jasmine Abraham: 3:49

And I asked her, you know, Hey, all of these apps were telling me that I should count my kicks. Like, what do you think? And she was like, is your baby active? And I was like, gosh, yes. He's a ninja in there. He kicks me all the time. And uh, she said, okay, well if your baby's active, then you don't need to worry about counting. You're good. And so I was working from home at the time. Sitting down while very pregnant and having these kicks happen. It is painful, it's uncomfortable. And so I learned how to ignore them, right? Because I had to get work done, I had to get things done. I couldn't be uncomfortable all the time. So I learned to ignore it.

Maura Leahy: 4:24

Fast forward to about three weeks before Jasmine's due date. In the summer of 2020, she was visiting family a few hours drive from home when on Saturday, June 27th she realized she hadn't felt her son kick all day.

Jasmine Abraham: 4:38

I was with my mom and my sister out shopping, doing errands, and I looked at my sister and I was like, I feel like I haven't felt him move. And she was like, well, maybe he's just running out of room. And so I go and I try to lay down on my left side because that's usually what can get him going. And I didn't really get anything there. And then I went and I tried ice water because that would really get him going. And I felt nothing. And so I called my husband. I'm like, I feel like I'm overreacting. Like this is a perfect pregnancy, a healthy pregnancy. Like what could go wrong? And he's like, call your OB. And I was like, I don't wanna call my OB, it's Saturday. And he's like, promise me you'll call your OB once I make a promise. I, I keep a promise.

Maura Leahy: 5:18

Jasmine kept her promise and called her obstetrician, or OB, who for peace of mind, suggested she go to a local labor and delivery unit. Jasmine's sister goes with her since her husband hadn't gotten to town yet.

Jasmine Abraham: 5:30

They took me back and the nurse put the contraction monitor on and then she tried to put the doppler on and was having a hard time finding his heartbeat. And so I was like, oh, you know, you can usually find him here or here. And she said, okay, well I'm just gonna have the resident come in and, and do an ultrasound real quick just to make sure everything's okay. So two residents walk in and at this point it's Saturday, about nine o'clock at night, they put on the ultrasound and I'm just waiting for them to send me on my way. And then the male resident, he looks at me and he said, I'm so sorry. There's no heartbeat. It's nothing you did, and he said it so sweetly, but the finality of that statement, I, I didn't know what to do and the only thing I could do was look at him and say, what? And then all of a sudden I don't hear anything else he says.

Maura Leahy: 6:28

Jasmine then had to call her husband and tell him that their son had passed away. Not only that, but despite having found out that Qasem had died, Jasmine still had to go through labor.

Jasmine Abraham: 6:39

At this point, I have to get induced. And so this is my first pregnancy. I'm full term, and I asked, you know, do I have to go through labor now? Because this is the one thing I was so scared of, right? Labor. Labor was the scariest thing

Maura Leahy: 6:53

as if Jasmine, her husband, and their family hadn't been through enough already. Jasmine then got told she tested positive for covid. While her and her husband's parents were able to see her thanks to compassionate care, only she and her husband were present during delivery with medical providers in full gown gloves and masks.

Jasmine Abraham: 7:14

So they start induction, and this is my first time doing this. My body wasn't ready to have the baby yet, and it takes a long time. So it isn't until Monday evening that my son was born, so Qasem, was

born at 7: 7:30

43 PM on Monday, June 29th. And when they placed him on my chest, it was 100% the happiest and most devastating moment of my life because I had waited so long to meet him and he was just quiet. I wanted them to be wrong, and he was just quiet. And so I just looked at him and I looked at my husband and I said, dammit, he's cute., you know, this would've been so much easier, . Of course you're gonna think your baby's cute. There was, there was a lot of, uh, dark humor that happened in that hospital room because there needed to be, there needed to be something.

Maura Leahy: 8:22

Up until this point, Jasmine was still struggling to understand exactly what happened to Kasum when she had been told that Saturday evening that he had lost his heartbeat. She asked the nurse what this was called and was told Intrauterine fetal demise.

Jasmine Abraham: 8:39

And it wasn't until I was admitted into that room that I saw a pamphlet that said, stillbirth. I said, that's what this is. These still happen. In my mind, there was no doubt that, you know, once I passed that first trimester, that I was gonna have a baby to bring home in, in three weeks time at that point. And so that's why when he had told me that he lost his heartbeat. I was like, wait, babies. Babies can't die in in their mom's stomach, especially if nothing's wrong with them.

Maura Leahy: 9:07

It wasn't until this point that Jasmine had a word for what she experienced. Stillbirth.

Rose Horton: 9:14

Stillbirth is defined as the death or the loss of a baby before delivery or before birth. There's a difference between stillbirth and miscarriage. When you have a miscarriage that's the death or loss of a baby prior to 20 weeks, which is about five months of pregnancy. So anything after five months, pregnancy or gestation, as we like to say in healthcare, is considered a stillbirth, a loss of a baby during pregnancy or right during.

Maura Leahy: 9:51

That was Rose Horton, executive Director of Women and Infant Services at Emory Decatur Hospital in Atlanta, Georgia. I can't tell you when or where I first learned the term stillbirth. Was it in a textbook, a news article, or an episode of tv? But I, like Jasmine, did not have any idea just how common stillbirth still is or what causes it. Here's Rose again.

Rose Horton: 10:15

Stillbirths affect one and 175 births a year. So about 21,000 babies are are still born in the United States. It is important for us to recognize that the prevalence is higher than we think. Unfortunately, we can't eradicate stillbirths. We will always have it, but we know that at least 60% is preventable.

Maura Leahy: 10:39

I asked Rose about what some of the risk factors for stillbirth are. She shared that some of the more common risk factors are a maternal infection where the birthing person has an infection that could cross into the placenta and cause the baby to have an infection too. If the birthing person has hypertension or high blood pressure, preexisting diabetes or gestational diabetes, if they're 35 years or older, as well as obesity and smoking. Rose also made sure that she called out some racial disparities experienced by black and brown parenting people.

Rose Horton: 11:12

In some of the literature, you'll see something related to race being a risk factor, and I just wanna be really clear that race is fundamentally a social construct, right? So race is not a risk factor because there's no gene that separates us by. So if there is a higher likelihood of stillbirths occurring for black and brown women, and I'm one of those, it's not related to something biological. It's probably related more likely to racism, to bias, to culturally insensitive care or lack of cultural humility as it relates to the care of the BIPOC populations.

Maura Leahy: 12:01

As unbelievably difficult and painful as Jasmine's story is for BIPOC or black, indigenous and people of color, parenting people, the pain and grief they experience when a baby is still born can be heightened or exacerbated because of racism, bias, and culturally insensitive care. Nneka Hall's experience losing her daughter Annaya, is evidence of this. Nneka wears a lot of personal and professional hats. She's a mom first and foremost. She has two sunshine babies. Those are babies born before a loss. Her angel, baby Annaya and a rainbow baby or a baby born after the loss of a pregnancy or death of a child. She is a maternal health advocate and full spectrum doula, and has been doing this work since her daughter Annaya was born still. She is also a black woman. Let's hear from Nneka about her experiences being pregnant and birthing and a black or brown body.

Nneka Hall: 12:57

Well, when you're living in a melanated body, regardless of social economic status, it's almost as though you have to prove that you are educated, that you know your body. The people that I've worked with over the past 11 years, we all pretty much have the same story we were not listened to. It's almost as though you're a spectator in your pregnancy, so if something is off, and you, you know, there have always, there's always been a myth that is not true. I'm just gonna say it now. It's not true. Pain is pain. Everyone feels pain unless they have some sort of nerve issue or are born with any kind of problem. There's a misconception that dates back to slavery that says that black people have thicker skin. No, that is not true. We feel pain. So oftentimes when we talk about whatever we're feeling, it's brushed off. When we go to the hospital, immediately, you're a minute pregnant, you're seeing your doctor and they start talking to you about weight. There's always an assumption that you're hypertensive, that you suffer from diabetes. That you're a drug addict. When if you look at the opioid crisis, it's not led by black people, so that's covered during pregnancy as well. Decisions are made for you without your consent, and you pretty much have to go along to get along.

Maura Leahy: 14:36

Nneka's second oldest child and Annaya's older sister had a congenital heart defect that wasn't identified until after she was born because her heart was never looked at. On ultrasound, her oldest child, a son, was diagnosed with a kidney disease when he was seven. Knowing this during her third pregnancy with Annaya, Nneka was rightfully nervous and worried that something might be wrong, so she was hesitant to let her kids, then 10 and five years old get excited about a baby sibling until Annaya got a clean bill of health for both her heart and kidneys.

Nneka Hall: 15:07

On August 26th, 2010, I took my older two with me to my 39 week checkup. The doctor was running late, so we, we had an extra hour and we were sitting in the waiting room. They were excited because they were gonna play Doctor with the Doppler to listen. And it never happened. It was my 39 week exam. So going with what I had experienced with the previous two pregnancies, I expected to hear, okay, we expect you to be back here at any time you've dilated this amount. Oh, baby's doing great. See you next week, or what have you. If, if you don't go before our next, you know, 40 week appointment, then we'll see you next Thursday. But what actually happened was when she took out the Doppler to listen, she did not hear a heartbeat. And she looked at me and she said, well, you know what, baby could be laying in a weird position. Let's go down and take a look. It was almost as though she knew before I knew. And you know, I always said in hindsight it was different. My belly felt different because it felt like my child was just laying there as opposed to what it felt like when she was alive and thriving. And another doctor came in, they took a look and I heard, oh, it was very recent while she was here. And then I said, you know, I can hear you. And that's when my doctor said, I'm sorry, there's no heartbeat. Let's go back to my office so we can discuss next steps. So I'm thinking, because I heard it was very recent, I said, why can't you just cut me open, get her out and start chest compressions? And they said, that's not how this works. She said, when we got back to her office, well these things happen and why don't you come back next week? If you haven't gone naturally, if you haven't started having contractions and your body doesn't do it naturally, why don't you prepare to come back to be induced? And I stood my ground. I refused to walk around another day as a pregnant person, especially knowing that I felt like a fraud. I was pregnant, but my child was dead.

Maura Leahy: 17:33

When Necca shared this during our recording session, my jaw literally dropped. I'm not sure what shocked me more. The fact that these providers are sharing the fact that Nneka's baby has passed away without taking the time to pause, look Nneka in the eyes and communicate that to her, versus her having to overhear them, say there's no heartbeat. And Nneka coming to that conclusion on her own that they didn't hear Nneka's concerns, and we're just dismissing her as, that's not how this works, versus taking the time to sit with this grieving mother. Tell her she is not to blame or that they were just going to send her home after Anaya had passed away, and expect Nneka to just wait to go into labor naturally. Nneka and Jasmine's post-loss stories continue to be very different experiences as both families begin to deal with some of the short-term impacts of the loss of their babies. Here's Jasmine again.

Jasmine Abraham: 18:26

Both of my labor and delivery experiences have been nothing short of incredible, and specifically my stillbirth experience. My rainbow baby experience, it's right there on par, but the care and the compassion that I received, all of this set the foundation for my recovery. And, you know, just the fact that these women, they sat there, they held my hand, they, they acknowledged everything. And the doctor that even delivered Qasem had gone through a loss himself and had told us about it. And so when he had delivered Qasem, he was crying. The whole room was crying. And so I am extremely grateful for the experiences that I've had in labor and delivery in two separate hospital systems. But I also understand that part of that is the privilege of how I look. You know, I understand that I am white. I'm Middle Eastern, but I'm white. It plays a part, it's, it's incredibly unfortunate, but it plays a part. And the difference in Nneka and I's story is proof.

Maura Leahy: 19:30

Nneka, on the other hand, faced a series of negative care experiences. She shared the following with me about the time before she was moved over to labor and delivery.

Nneka Hall: 19:39

I sat in that office trying to figure out what happened, trying to replay everything I'd eaten and the warning signs. I kept telling them for weeks that something was wrong. That she felt like she was fighting in utero the day before she died. I now know she was having back-to-back seizures. The hiccups had progressed because she started having hiccups in the second trimester, and they progressed to the point where we'd have to wait for her to stop hiccuping to listen to her heart on the Doppler at appointments, and they did not think that that was any kind of warning sign whatsoever. It was just one of those situations where I could now see the timeline clearly, but in that moment I could not understand, and I played a big role in that blame game for myself.

Maura Leahy: 20:41

After Nneka gave birth to Anaya, she was in the overflow unit recovering when she had the following experiences.

Nneka Hall: 20:48

the nurse came to me about an hour after I had her and asked her When are when? So when are you leaving? And I said, what do you mean? And I said, well, I've had two babies before and I know that since I had a vaginal delivery, my insurance covers a 48 hour stay and I will be staying for 48 hours. Well, in these cases, people usually just go home. The stay in postpartum is for the baby, not for the birthing person. So I could laugh now, but I stood my ground and I stayed, and they put me in postpartum overflow, which meant I had to lay on my buzzer if I needed anything. I had to keep pressing and pray that someone would eventually come. Something that would've normally taken a few minutes to get a response could take 45 minutes to an hour, and that's because there was no baby when I was discharged, I was given what I consider all of the tools to take my own life. I was given sleeping pills, antidepressants, and anxiety meds, along with the instructions to use cabbage to dry up my milk. Now, the only thing up until that point I had ever known to do with cabbage was eat it. What I know now is if you eat cabbage during your postpartum period, it helps increase your milk supply. However, at that time, I was supposed to put cabbage leaves in my bra and that would help to dry up the milk. But that's not what the woman told me. She did not explain it all. And I went home and ate and ate and ate cabbage for days and became engorged. And I had to call my stepmother to ask her, what am I doing wrong? I'm miserable, I'm engorged, what should I do? And she asked me and she said, no, baby. You were supposed to wear the cabbage leaves. And who would know instinctively to wear produce? No one.

Maura Leahy: 22:45

I'm not sure who ever instinctively would think you wear cabbage, and it shouldn't have been Nneka's responsibility amid the new grief and loss to ask. I also asked Nneka and Jasmine about some of the other short-term impacts of the loss that they had to navigate and if there was anything about their postpartum journey that they wished had been different. For Nneka, some of these impacts centered around mental health supports and culturally competent care

Nneka Hall: 23:11

upon leaving the hospital, having all of the mental health and surround care options available, connecting the families to resources before they step out of the door, meaning the doula, meaning the mental health person, and on that mental health team, there has to be a licensed mental health clinician along with a psychiatrist just in case meds are needed. Understanding that sleeping pills should not be the only medication. And recognizing that someone like me who had a history of major depression would be at risk for other PMADs because of the type of loss that I had because I carried the term

Maura Leahy: 24:00

PMADs that Nneka just mentioned mean perinatal or postpartum mood and anxiety disorders.

Nneka Hall: 24:07

You may as well say Annaya was still born on my 37th birthday. That enough can drive someone over the edge and the fact that I was separated from my husband. So all of those factors should have been factored in and all of the supports should have been in place before I left the hospital. What aftercare looked like was me having to find culturally competent supports on my own, which meant I spent a lot of time online looking for people who looked like me. It took several attempts at therapists to find a culturally sensitive therapist. The very first one, the one that they recommended, I went to her office and our meeting was about 10 minutes long. I had a picture of my daughter with me and she said she wanted to see it, and when she saw my daughter's picture, she asked me, are you sure she was dead in this picture? So I took my picture and I looked at her and I left her office and I fell apart. Just people needing to understand that if you work with this demographic, you need to be trained to work with this demographic. And you need to be trained by people who understand, not someone who read everything in a book, someone who's lived this journey, someone who's been trained by someone who has lived this journey. And there are a few organizations that are run by people who have lived this journey.

Maura Leahy: 25:47

The hospital where Jasmine's son was born had just had a Cuddle cot donated to them. So Jasmine and her husband were able to spend some time with Qasem after he was born. When Nneka's daughter Annaya was born over a decade earlier, her birthing hospital didn't have a Cuddle cot. I, for one, had not heard of a Cuddle Cot before and asked Rose to tell me more about it.

Rose Horton: 26:08

So cuddle cot is a lovely intervention that we have, and it looks a lot like a bassinet and. The beauty of the cuddle cot is that it allows for air movement. So if you have a baby that is born still, you can put the baby in there and it keeps the baby's body temperature cool. And it decreases the process of death and decay because, many, many times our birthing parents, they need a moment. Sometimes they wanna hold their baby right away and sometimes they just need to process everything that's happened and they're not ready emotionally, mentally, to look at their baby that is not living. So the Cuddle Cot really gives the gift of time. In essence, we can keep the baby in the Cuddle Cot and when the parents are ready to see, to hold, to handle the baby, then we can do so. One of the processes that we use in our organization is we will keep the babies in the Cuddle Cot and when the parents are ready, we also have a warmer, usually we keep some intravenous solution that's warm and we'll, uh, wrap the baby up in that so that there's some warmth to the baby when the parents are ready to hold the baby.

Maura Leahy: 27:27

Jasmine also shared some of the short term impacts after Qasem was born still in 2020.

Jasmine Abraham: 27:32

I literally reverted back to somebody in high school. I couldn't think about my job. I couldn't think about what food I needed to eat. I hated bathing. I hated my body because I was postpartum. I'm bleeding. I am dealing with engorged breasts. I am looking at a stomach that is empty. And so many times my husband had to be close to the shower cuz he just knew. He knew that every time I would look down I would just be a mess. So short term, being taken care of, like that was incredible. A lot of people sent flowers. I wasn't a huge fan of that. Mainly because flowers die, but it's not something you think of, right? It's the default. And a lot of people had reached out asking, how can we support you? What can we do? And so we ended up making a GoFundMe for him. Not for us, but to use that money to donate to organizations that are meaningful to us. Being able to know that we can make these donations through our friends and family that cared enough to donate so that we can do something in his name was kind of everything. And then for me, I scoured YouTube. I found one girl who basically documented her whole journey and put it on YouTube. Being able to see somebody that has gotten through it and where they were at certain milestones after was really helpful for me because I was able to see, okay, this isn't gonna be forever. It isn't always gonna feel this bad in the short term.

Maura Leahy: 29:18

We also talked about what supports are helpful for families who have lost a baby. For both Jasmine and Nneka, support with day-to-day functioning were really important.

Jasmine Abraham: 29:28

My executive function, that part of my brain dead at that point it did not work. And so I didn't know what I needed. If you are wondering if, if a person is alone in, in their home, away from family, bring them food, say, you know, what do you take on your burger, whatever it might be, take, take all decision making out of it and, and provide them with something. Right? You know, it's easy just to say, I'm thinking of you. I'm so sorry for your loss. These small gestures that you can do will stay with us forever and mean the entire world. Ask them if they wanna go to coffee, if they want to share their story. I was very client facing and so I reached out to a small group of our clients and I said, you wanna grab coffee? Let me know. And I assumed that if you agreed to coffee, you agreed to me telling my story. The three people that took me up on that offer, they sat with me in my grief and they let me tell my story and they cried with me. And I am incredibly grateful to them. For that, you can easily ask somebody, would you like me to continue to use their name? Are you comfortable with me asking you about your birth story? And if they say no, let it go. Say, okay, if you're ever ready, I'm here. It's very, very simple just sitting with somebody and allowing them to tell their story if that's what they want to do.

Nneka Hall: 30:50

How can you be supportive? You can be supportive by developing a meal train for them, because the hardest part is when you're not able to think, is to meal prep, activities for the kids. If you're close to the family, find a way to get those kids out so that they can just be kids. You know, when you're heavy into grief, there's a thickness, and these children change because of that thickness. Find culturally competent books. There are tons of books. There are new ones being written every day that you can share with the family. There are tons of books that surround explaining pregnancy loss. When you're supporting, always talk about the child by name. If you know the name or show ownership by referring to their child as your baby, your child, whatever term they use to call the baby, because we're the only ones who talk about our children. The living children are always talked about. It's the deceased ones that seem like they're forgotten and know that there's always a six degrees of separation. Everyone knows someone, whether you do or you don't, who suffered a loss. So be mindful of that. Know "at least" comments whatsoever. At least you didn't get to know her is what I got often. no judgment because the loudest child you'll ever have is the deceased one.

Maura Leahy: 32:19

Speaking of acknowledgement, that was something else that was really important for both Nneka and Jasmine and their grief journeys. It's important that people acknowledge this baby that was so loved. Jasmine talked about what that acknowledgement can look like right after the loss of a child, but also a little further down the line.

Jasmine Abraham: 32:36

I remember this moment so clearly at my loss a few days after, we had some, some family friends come over and they saw me and they kind of gave me like a sad look, but said nothing. And I'm, I'm literally days postpartum and barely days past burying my child, and the conversation was as if nothing had happened. You know, I'm not asking you to make the whole conversation about me, but pull me to the side. Don't ignore what happened. Pull me to the side and at least just give a, I'm so sorry for your loss. You don't have to offer anything, but just acknowledgement. That's the biggest thing. But don't ignore it. You know, I know it feels awkward. I know it's uncomfortable, but imagine how uncomfortable going through this. If somebody asks me, how many children do you have? I say Two. And if they prod further, I am very honest. I say, my son passed. You know, he was born still at 37 weeks. And, and it becomes awkward for them. Doesn't become awkward for me because this is my reality. This is my life. And ultimately we're all humans. We just want connection. We just want acknowledgement. And ultimately everybody will acknowledge my daughter. I love her to death. She's incredible, but very few acknowledge my son. And that hurts. Just understanding that it's the same as anybody else. If you were to have two kids, they're very different children. they're very different stories that go along with those children. It's the same thing. I just can't show you one,

Nneka Hall: 34:06

acknowledge how little or how much they want to talk about it, honor it. I mean, where I worked at the time, one thing that I noticed is that when I went back to work, they didn't tell the staff and I worked for a college at the time and I remember if someone's cat died, they'd put it in the newsletter, but they did not think to put that my daughter died. So I was still getting presents and asked to see her.

Maura Leahy: 34:37

Another one of the many things I learned while working on this episode is that the short-term and long-term impacts can look very different for families, and that the pain of the loss will never go away. I also asked Nneka and Jasmine about what some of the longer term impacts of the loss looked and felt like. A trigger to this day for Nneka are clocks because she's transported back to the room in labor and delivery where she was put before delivering Annaya, a room that still had a warmer and other equipment that you would need for a living baby. I can't imagine what those reminders of living babies would feel like knowing that her baby had just passed away and she wouldn't be needing any of those.

Nneka Hall: 35:16

I can remember that clock. I don't wear watches. I use my phone to tell time. I set alarms if something's needed to do because clocks trigger me and it makes me flashback to that moment.

Maura Leahy: 35:29

Nneka also talked about broader impacts of loss that we at a systems level need to center.

Nneka Hall: 35:34

We need to understand the risks of our families before they become emergent. The long-term effects, it's not something you'll ever forget, so you need to be tapped into community. They need to understand you're not the only one. There are other people who have survived. And are thriving after a stillbirth. And there are so many people who are wonderful in taking others by the hand. I learned from those who did it for me, came in, saw me grieving heavily and took me by the hand. That's a beautiful thing when you have a mentor, and that's what everyone needs. They need that support system. They need that person who really understands what they've been through, who've walked that walk. They need not to be left alone. And people need to understand that. They need to approach families without judgment and to talk to them from a stance of open ears and closed mouth.

Maura Leahy: 36:31

For jasmine, some of those longer term impacts really started to show up when her rainbow baby was born 14 months after Qasem.

Jasmine Abraham: 36:38

All of a sudden you truly realize everything that you missed with him. I am very fortunate for my culture, but it comes with a lot of. Not understanding why I'm still grieving or not understanding, quote unquote why I'm not over it. Especially once my daughter was born, they expected her to be his replacement. This is no dig on any of those people that ever said or expected any of that because they just simply were never given the opportunity themselves to actually appropriately grieve something and so they don't understand somebody actually speaking out about it. I'm just vocal about it because I looked for somebody that was vocal about it. When I went through the loss, I needed to know that it wasn't only me that was feeling these things and so long term, it's seeing my daughter and seeing all the things that were missing. The first day that I dropped her off in daycare and all of a sudden the house was quiet and it brought me straight back to when I started working from home after we lost him and there was supposed to be crying. I could never work in silence. The, the radio, there always had to be music. There always had to be something going on. Being two years removed, I understand that everything is gonna change as life changes, but long term, that's kind of been the biggest ones.

Maura Leahy: 38:01

While not all still births can be prevented, there are best practices that the medical field can follow. There are also other things within our locus of control around increasing awareness about stillbirth and making sure that the right supports are in place for parents when loss does happen. Let's first hear from Rose about what practices do exist.

Rose Horton: 38:20

It, it is important for us to really normalize what are some. Very easy preventative measures that we could put in place, and we have a lot of best practices out there and people who are doing amazing work to really decrease the number of preventable stillbirth. We really need to get the word out and to educate and to advocate, and to empower everyone, not just the women and their families, but also the healthcare organizations. We have a responsibility as well to be informed and to make sure that we're sharing that information at every interaction with patients. What we know with good data is that the baby's movement is reflective of the baby's wellness. It's important for women and birthing people to be aware. The movement, you know, how often does my baby move just like us. If we're not feeling well, we're not gonna be moving around that much. So if your baby is moving less than normal, it may be an indication that the baby is not doing well. And it's important for us to really monitor that birth spacing and is another thing that we can put in the bucket of prevention. It is recommended that space pregnancies between 18 and 24 months. And I will be honest to say that I had, uh, three unplanned pregnancies and I'm a healthcare professional, so I know that we know the right things to do, um, and we can't be intentional, and sometimes life happens.

Maura Leahy: 39:54

Rose shared that the absence of hypertension, diabetes, obesity, and smoking can reduce the risk of stillbirth. However, stillbirth can still happen. All three of our guests talked about the importance of listening to your body. If something doesn't feel right, trust your gut and advocate for yourself. There are a few common, noninvasive things that can happen if a pregnant person comes to the hospital or a doctor's office. Rose shared two of those procedures, a non-stress test or NST and a biophysical profile.

Rose Horton: 40:24

When you come to the hospital, a couple of things could happen. Will definitely put you in the monitor to listen to the baby's heart rate to see if you're having the contractions, and we'll do what's called an NST. So we're looking at how often is the baby moving and when the baby moves, does the baby's heart rate accelerate, which it should think about us. If we're running or moving quickly, our heart rate tends to go up. So if you come in and you have a non-stress test and we see that the baby's moving, but we don't see any accelerations or we're seeing that the baby is not moving, there are a couple of other tests that we can do. We can do what's called a biophysical profile. And that's usually done with an ultrasound. An ultrasound technologist who comes in and they look at several things. They will look at the baby, they will look at the amniotic fluid, they will look at movement. They will look at the baby like flexing and extending the arms or the legs. They'll look at breathing, you know, can you the rise and follow the the chest? And also they're looking at the placenta. How does the placenta look? Is the placenta aging appropriately or are there calcifications on the placenta, which may be a sign that the placenta is aging quickly and there needs to be a planned intervention or scheduled delivery. So those are really easy, non-invasive things that we can do to give us a really good indication of fetal wellbeing. Is this baby healthy and able to stay in its nice, safe place in utero for a little bit longer? Or is this baby not healthy and we need to intervene and schedule an induction or do something immediately? Unfortunately, we know that not all still births are preventable. When babies are born still, we must be doing more to ensure that families have all of the supports possible as they navigate such an unexpected, painful loss. I asked Nneka what support she thinks are most needed.

Nneka Hall: 42:32

Well, every hospital needs a bereavement suite, and there are a few hospitals in the US that now has bereavement suites, and that's a blessing. However, Families who've endured this should not be providing the hospital with equipment. And that's the only way that we get bereavement suites. A family or a group of families come together and raise funds to put in these soundproof rooms. And it's a whole suite where you would give birth, stay with your baby postpartum, and your family can be in the adjoining rooms, has a refrigerator, you know everything that you need for that stay so that you don't have to keep coming and going and being forced to endure the whole live birth situation. So that's one recommendation. Having to hear other babies cry, having to see other people's joy while you're entering and exiting. It's, it's gut wrenching. Um, secondly, every hospital should have. A cooling system.

Maura Leahy: 43:40

When Nneka says cooling system, she's referring to cooling units like a cuddle cot that Rose described earlier. Both Nneka and Jasmine mentioned how it is usually families that are donating money to build bereavement suites or donate a cuddle cot to a hospital, but we shouldn't be placing that responsibility on families who have already been through unimaginable loss. Nneka also shared some other helpful bereavement supports.

Nneka Hall: 44:03

They need someone to walk this journey just as their birth doulas and postpartum doulas, there are bereavement doulas and they should have an active list so that they can call culturally sensitive people to come in and work with these families.

Maura Leahy: 44:22

Rose shared what bereavement supports look like at her hospital, so

Rose Horton: 44:26

there are a couple of companies out there that are focusing on bereavement. We have a program where we are intentional about talking about bereavement with our families, making sure that we do hand prints and footprints if we're able to get a lot of hair and to take pictures, really sweet pictures for parents, and also to give information about support groups because again, in our need to really normalize the whole process, it's important to say, this is a loss and you're going to mourn this loss for longer than you may think, and that's okay. Right? You get to define how long you've mourned the loss, and just to encourage our families, everything may be going great for a period of time, and then you may have that overwhelming sadness. So giving them some tools that they need and connecting them with support groups so that they know that they're not alone. There's a safe space for them to have these conversations and for them to feel supported. That's all part of the bereavement process.

Maura Leahy: 45:36

In addition to making sure all hospitals and birthing facilities have bereavement supports in place, another area where there is still a lot of work to be done is around stillbirth awareness. As was shared earlier in the episodes, stillbirths are much more prevalent than most people realize. It's not something that is commonly talked. While I think we see much more public dialogue around miscarriage and pregnancy loss, that dialogue around stillbirth isn't something that's currently happening. I spent a lot of my time during my discussion with Jasmine digging deeper into what this awareness didn't look like for her and what needs to

Jasmine Abraham: 46:08

change. I don't think the obstetric field, I don't think anybody is very educated on it. The thing that I wish I knew, honestly I wish, I just wish I knew that stillbirth was even a possibility. I was so naive to think past 13 weeks, good to go. Baby's coming. Especially if there's like no anatomical defects or any issues with the baby. Baby's coming, you know? I think I also understood that you can lose a baby during childbirth, you know that I understood. But while he's inside you, like in in the safest place possible, he can just pass. and so I wish that I didn't have to ask what this was called, right? I understood what miscarriage was. I understood what SIDS is. Everybody tells you everything about sids, right? But it's stillbirth. You know, what does that even mean? I wish I knew something

Maura Leahy: 47:02

about that. Jasmine then told me about this 160 plus page binder about pregnancy that she got from her healthcare network that she read through trimester by trimester, and she didn't recall reading anything about stillbirth. She actually looked through this binder during our call and there is no mention of stillbirth. The closest it comes, and on the last page is a section on postpartum depression after childbirth or pregnancy loss. She also told me about a postpartum visit that showed the need for more provider education around stillbirth.

Jasmine Abraham: 47:33

I remember at my six weeks postpartum appointment after class, The nurse came in and she was like, oh, I'm so sorry. I heard about your miscarriage. And then, and then on top of that, I asked my ob, I said, why didn't you tell me that this was a possibility? I, I pleaded with her. And she said, because it's so rare, it's one in a hundred thousand. And I was like, no, it's not. And she was like, oh, no, no, no, I'm sorry. I'm sorry. It's one in 1000. I said, no, it's 165. Like trust. Trust. The girl that just went through it to know all of the statistics about it. And so she was just dramatically uninformed.

Maura Leahy: 48:10

But how do you talk about this thing that no one wants to talk about, but that we need to talk about? Rose thinks leading with honesty and transparency are key.

Rose Horton: 48:20

I think the best way is just to be honest and to be transparent. Cuz we all wanna know what are the risks. Don't just gimme the good news and let me go along thinking that. Nothing terrible can happen. Tell me everything so that I can be informed and I can be prepared for a worst case scenario. I think if you approach it in that way, it's, it's helpful. Not saying, oh, because you're a black woman, there's a strong likelihood that you may have a stillbirth. That's not how we have conversations. We have conversations around, this is what the data shows. What we see up to now is not worrisome. However, if your pregnancy's advancing and your baby is not growing at the rate that we expect, also having conversations about movement, also conversations about smoking. So I think it's just having those kind of conversations to inform people of why we're concerned and what the possible intervention, uh, may

Maura Leahy: 49:21

be. Jasmine's framing when she's advocating for stillbirth awareness and prevention is framing it in the least scary way possible.

Jasmine Abraham: 49:28

You know, I think one of the analogies is when you get on a plane, you're told to buckle your seatbelt, and you're told what to do in case of an emergency. Like you're not trying to frighten your passengers, you're trying to inform your passengers. So why are we not informing in the best way possible? There are easy ways to explain to somebody why kit counting is important. I wanna explain, Hey, here's the thing. Yes, stillbirth is scary. Yes, pregnancy causes anxiety. But why? What's, what's the root of that? Right? The root of it is you have love for this child that hasn't been born yet. Now, if there is something that you can do that is non-invasive, that allows you to have an understanding of what you're doing and why you're doing it, finding the act of time, right? So you're learning their habits, counting and seeing what their normal is. Why are you doing that? Because stillbirth is possible. If you see something off, talk to your provider, try to intervene, right? The way to frame it in, in my opinion, is knowledge and empowerment. Understanding how to explain something in layman's terms to the regular person of, okay, here is why I'm explaining this to you. I'm not saying that this will happen to you, but here is something that has happened and here's something that you can do to combat it. You know, you can easily do this step where you can monitor your baby's movements, and if you ever feel something off like your maternal instinct, and I, I think that we're not giving credit enough for this, whether you're a first time mom or a seasoned mom, that maternal instinct is there, trust it. You know, and the biggest thing is advocating for yourself because I took everything that my OB B had said as law, when that's not necessarily what I should have done. I don't wanna scare somebody, but I also don't want to not say something. I'm just trying to do what I wish was done for me, and ultimately I just wish I had more education because I was starving for it. I say this mainly to the first time moms, don't let anybody tell you that you don't know what you're talking about because you haven't been through this it, you know, you know your body.

Maura Leahy: 52:00

I asked Rose, from a systems level perspective, what do we need to see change or happen?

Rose Horton: 52:05

We know for a fact that bias and racism plays a role and along with the structures and the systems that we've created, because not all of our policies, procedures, or processes are helpful. Some of them are harmful, and when we talk about dismantling those structures and those systems, that's what we're talking about. Really looking at what we do through the lens of equity to say, Hey, is this helpful for all of the people that we serve? So that's part of the next steps or the current steps that we have to continue to do to ensure that we're providing equitable care and so we can have equitable outcomes across all races. I think the opportunity exists, I think until we really normalize the conversation about race being a social construct, that we need to continue to have these conversations. I think from a system perspective, there are a lot of things that we can do. Number one is we need to increase awareness. This has been going on for centuries, but we still don't talk about it, and there's still people who are like super surprised that I had no idea that my baby could be born still. And as I say that for the communities and for the patients we serve, I also say it for the healthcare system, we really need to talk about stillbirths as something that can happen so that we as a healthcare system can also give information to our patients and their families to help them be prepared. Parental leave is is a huge one, and I think there's an opportunity when we talk to patients who've had a loss, that we tell them that you still need 12 weeks. There's still a fourth trimester. We know that in a fourth trimester, that's when maternal mortality risk increase and what the data shows us is that 15% of women who've had a stillbirth will have morbidity and mortality. 15% of them are at a higher risk for that. So we need to talk about that just as much and to offer that support. So parental leave is so great because I think parental leave also helps as we have the conversation. And I think the other big change is just around equity and respectful care. It doesn't do us a lot of good to say, okay, we're gonna empower our patients to speak up and to advocate for themselves if we as a healthcare system are not gonna listen to them. So I think that goes hand in hand. We're gonna empower you to advocate for yourself and we're gonna listen and believe you when you tell us something feels differently and we're not. Minimize it or trivialize it, but we're gonna take it seriously and we're gonna intervene on your behalf. So I think that's part of the system change that needs to happen in healthcare system. We have got to do a better job listening and believing all of our patients and not thinking that we're the healthcare experts, but the patient knows their body way better than we do, and we need to listen to them and believe them.

Maura Leahy: 55:05

Speaking of listening, I was really excited to get to interview Rose for this episode because she is the creator of the hashtag not on my watch, an initiative that she created while doing some research for a speaking engagement a few years ago.

Rose Horton: 55:18

As I'm doing research, I am seeing all of these articles of morbidity, mortality, women dying, women not being listened to, and I remember being so frustrated. I'm like, what on earth is going on? I thought by now we would improve this significantly. But to my disappointment and horror, the numbers were increasing, but I'm like, what can I do? And the thought not on my watch popped in my head. I'm like, not on my watch. That's what I can do in my sphere of influence, my locus of control. So I created the hashtag, and I was thinking, this is something I'm gonna share with nurses created by a nurse for nurses, because I do believe that we as nurses, because there's a lot more of us in the healthcare system than anyone else, for almost 4.3 million of us, that we can change a trajectory of morbidity and mortality. So it was a call to action to nurses, and this is what I wanted them to say in their initial interaction with patients. Five things I wanted them to say. Number one, please know that I'm committed to treating you with dignity and respect. Know that I will provide evidence-based care as I take care of you. It's based on science, it's based on data. It's based on literature. It's not based on my opinion or how I feel. It's scientific. Please know that I will advocate for you. Please know that I will listen and believe you. So if you say you're in pain, I believe it. If you say that you're overwhelmed, if you say that you're scared, if you say that your baby's not moving, I will believe you. Please know that I am committed to shared decision making. What's important to you is important to me, and I wanna make sure that I amplify your desires. I see you. I'm your person. And that is all that I wanted our nurses to say to their patients to decrease the anxiety associated with hospitalization. To increase the anxiety associated with coming to a place where you know you're gonna be vulnerable.

Maura Leahy: 57:32

While, Rose created the not on my watch hashtag in response to the maternal mortality crisis. There are a lot of parallels that carry over into the stillbirth space.

Rose Horton: 57:42

It really, really flows well with stillbirth because I know, I have seen it, I have heard it. Patients come in and say, you know, my baby's not moving that much. Oh, you know, you're due in six weeks. That's normal that your baby's not moving. I don't wanna hear that. I want our patients and our, the women in the community to know that when they come in and say something, we will listen. We will believe and we will take action. And if we can get just that one commitment within all healthcare organizations, I think that would be phenomenal. Because as you think about historically, What has happened in healthcare settings to black and brown and indigenous people? There's already a mistrust of the healthcare organizations. So we present to the hospital with a lot of fear, with a lot of anxiety. We present to the hospital knowing that nobody's gonna believe me. So we have our talking, uh, points. We have partners. Please advocate for me. We're all geared up. And that's a lot. That's a lot. No one should have to bear that burden. It is our job as a healthcare organization. Respect, professionalism, evidence-based care, listen, believe, shared decision making. It's our job so that their experience, our community's experience with us will be

Maura Leahy: 59:12

sacred. Two things stood out to me that I really wanted to call attention to as we start to wrap up this episode. One is the importance of community for families whose babies were still born. The second is how losing a baby has such a fundamental impact on who you are as a parent and a person. I wanna leave you with some quotes from Jasmine and Nneka on these two points,

Jasmine Abraham: 59:33

and the community that you find in this lost community really, truly is incredible. But yeah, it really just feels like it's only us fighting this battle. I miss my rose-colored glasses. They were lovely, but I'm proud of who's come out of that. You know, as soon as those were shattered, it was great. I have a whole different outlook on life. Nothing trusts me out anymore because ultimately what will happen will happen.

Nneka Hall: 59:58

Community is key in the survival. I've known, um, moms who have taken their own lives after this because it's a very horrible situation. And we also have to acknowledge that men and women grieve differently. Children grieve as well and I believe in being open. I've always been open and honest with my children. Know that every time you find yourself back in the throes of grief, the scab can fall off of your heart. Yes, but it falls off and it regrows more formidable each time. So there is strength. There's a strength in community. There's a strength in finding your space again, and reestablishing who you are. Know that this is not something anyone will ever get over. They just learn how to navigate the path and move through the path, and they change. It changes you. I don't remember who I was before and that's okay because I love who I am.

Maura Leahy: 1:01:08

You might ask what's being done on a policy level. This past September, we saw the introduction of a bipartisan resolution recognizing National Stillbirth Prevention Day. On September 19th, the Stillbirth Health Improvement and Education for Autumn Act of 2022 was introduced in the Senate when March, 2022. This Bill authorizes grants and establishes other programs to improve data collection on stillbirths. The Maternal and Child Health Stillbirth Prevention Act was introduced in Congress in March of 2022 and is expected to be reintroduced this. This critical piece of legislation would add stillbirth and stillbirth prevention to title five of the Social Security Act. As of this recording, only 17 states and jurisdictions have mention of stillbirth in their block grant narratives. I think this is a huge area of opportunity for Title five MCH professionals who are listening to this episode. Just imagine what an impact it would have on the inclusion of stillbirth as a priority in MCH block grant applications and annual reports. I asked our guests what they hoped listeners would take away from today's episodes, and one of the common themes was increasing the awareness that stillbirth is still happening to a lot of families. We need to do a better job educating people across all sectors and supporting families who've experienced a loss. In the show notes, we have a lot of resources shared by our guests, as well as some common terms you'll hear in the stillbirth community and links to the policies I just mentioned. I encourage you to take some time to learn more about stillbirth, and if you feel inclined, let us know on social media. One thing you did after listening to this episode, you can tag AMCHP at DC_AMCHP, or use #NotOnMyWatch. It could be simply reading one of these resources, talking to friends or family about stillbirth or scheduling a meeting with coworkers to see where there is room in your work to build in more stillbirth awareness and prevention. I know I'm going to ask some of my closest friends who've been pregnant, whether they have been told anything about the possibility of stillbirth and share some of the strategies I've learned for supporting and talking with families who have experienced a. I can't thank Jasmine, Nneka, and Rose enough for making the time to talk with me and for trusting me with their stories. I have to admit, I was nervous and uncertain as I started working on this episode. Stillbirth isn't something I knew much about. I didn't realize just how common it is, dare I say. I also felt some apprehension and discomfort, but the more I talked to my guests and heard their experiences, it's hard to describe the impact it's had on me. If you ask my family and friends, it's been something I've been talking about with anyone who will listen and, yeah, it's hard to talk about, but imagine just how hard it is for the parents and families who experience this. I want to be a mother one day, and while obviously this isn't something I want to think about or consider, I sure as heck would want to know that it's a possibility before going through the unimaginable. Working on this episode has confirmed for me just how important it is that we normalize conversations about stillbirth and I hope it's had even a small impact on you. Thank you all for joining us on this MCH Bridges. We kindly ask that you take a few minutes to fill out a quick feedback survey and let us know what MCH related topics you're interested in. And who you want to hear from on future episodes. A link to the podcast feedback survey as well as the transcript of this episode can be found@www.mnchbridges.org. Be sure to follow am on social media. We're on Twitter and Instagram at DC_AMCHP. We hope this episode created some new connections for you. Stay well, and I hope our paths crossed on the next MCH Bridges. This project is supported by the Health Resources and Services Administration, or HRSA of the US Department of Health and Human Services, or HH s as part of an award totalling $1,963,039 with 0% financed with non-governmental sources. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by hrsa, hhs, or the US government.