Life Kit - Navigating Life After Pregnancy Loss

Episode Date: April 12, 2021

Despite how common pregnancy loss is, families often suffer in silence. In honor of Black Maternal Health Week, Life Kit teamed up with the hosts of the podcast docuseries NATAL to share stories from parents who have experienced loss, and expert advice about how to support loved ones through grief.Learn more about sponsor message choices: podcastchoices.com/adchoicesNPR Privacy Policy

Just a heads up, you should know that this episode deals with the trauma of pregnancy loss. This is NPR's Life Kit. I always knew I wanted to be a mom. I'm a planner by nature. As a woman, I just, in my head was like, I'm going to be able to have kids. As we are conditioned as we're younger, you get married, you have kids. You get married, you have kids. Never in my mind did I entertain the thought of losing a baby, having a miscarriage, having a stillbirth. The doctors didn't mention it.

No one mentioned it. So I went in like a schoolgirl. And of course, my first pregnancy was perfect. So then when I had my first daughter, I'm thinking like, okay, let's try again. But my second pregnancy, I lost that baby through miscarriage and then my stillbirth. And then it kept on continuing. I was just like, oh my goodness, I am failing as a woman. And I felt all I was good as was birthing death. Everything was hush-hush. No one spoke of loss, at least not in my circle.

I'm Martina Abraham-Zalunga. And I'm Gabrielle Horton. We're the hosts of NADAL, a podcast docuseries about having a baby while Black. On our show, we pass a mic to Black parents like Yvonne McCombs and my own mom, Marilyn Abrahams, who you heard at the top of the episode. We invite them to share their stories about pregnancy, childbirth, and postpartum care in their own words. Today, we're partnering with LifeKit to have a real conversation about something that can be really difficult to talk about, and that's losing a baby. You know, Gabrielle, last year when we were doing research for our episode on pregnancy loss, I couldn't believe that between 10 and 15 percent of known pregnancies end in loss. And it's likely that number is even higher when unknown pregnancies are taken into account.

I remember that. I also remember how the National Institutes of Health estimates that Black women are twice as likely to suffer both early pregnancy loss and soul births compared to white women. But despite just how common pregnancy loss is, so many parents and families suffer in silence and don't get the support they need. So our hope is that this episode can be a real resource for folks. So if you're a parent who's recently lost their baby, you'll hear about ways that you can ask for and access the support you need, but also how the rest of us, whether you're a friend or a nurse or an auntie like me, can show up for the parents in our lives when they need it most.

The silence around losing a baby that my mom mentioned at the top of this episode is not only common, but for some cultures and households, pregnancy loss can also be a taboo subject. So our very first takeaway, and that goes for everybody, is to acknowledge the loss. Aila Parrott, a board-certified OBGYN in Washington, D.C., where she's also the president and CEO of an organization called Physicians for Reproductive Health. Now, I have a little bit, is my voice coming through okay? Because my video has been like delayed intermittently during the day. You look fine so far. Good. A big part of the silence around pregnancy loss, the failure to acknowledge that loss, is that we don't always have a shared understanding of what it is or how it shows up. There are lots of ways that people describe pregnancy loss. We're using that phrase here, but some people describe it as a miscarriage.

For an example, in the medical field, we describe it as a spontaneous abortion. All of those mean the same thing. The pregnancy stopped growing, typically in the first trimester, but not always. Dr. Parrott says that most of the time, it's unclear why pregnancy loss happens. That's why we call it spontaneous. Typically, in the way that I talk about it with people that I care for, it's nature's way of ending a pregnancy that wasn't going to be able to continue on its own.

My mom, well, she's all too familiar with what Dr. Parrott is describing. Hello. Hello. Who said hello? Me. Hi, Mommy. Archie, my Tina. How are you? I'm fine.

Two years after having me, my mom suffered a miscarriage. She and my dad tried again. And in January 1993, they gave birth to my twin sisters, Brittany and Brianna. But Brianna, well, she was born sleeping. I'm sure you might have heard this term before, or even sleeping baby to describe a stillbirth, which is another form of pregnancy loss that can typically happen after 20 weeks. The thing that always sticks out whenever my mom and I talk about this is how she remembers how her friends, our family, and even my dad completely avoided talking about Brianna. Everyone was so focused on my surviving sister, Brittany. It was almost as if Brianna never existed. But in reality, my mom just wanted someone to acknowledge her pain,

her loss, and the fact that one of her girls wouldn't be coming home. There's a lot of shame attached to pregnancy loss. And so almost the first or second thing that I always say for someone who's experiencing this is there is nothing that you did to cause this and there's nothing you could have done to prevent it, right? Because even for folks who don't articulate that internalized feeling of shame and struggle around it, sometimes it's there. I felt alone in my pain. I was alone in my pain. All it takes is one, one person to acknowledge that you did have a second baby, that baby was real, and it was enough. It was enough. So imagine what a community would be, right? It may seem really simple or even obvious,

but as we've just heard, that's not always the case. Without acknowledging the loss, well, how can parents or loved ones start to grieve and even heal through the pain? As a professional, helping clients to grieve is really very sacred work because there's no limit to how the grieving process will unfold. That's Asha Terry. She's a New York City-based psychotherapist who specializes in trauma and mood disorders. She's a perfect person to help us understand what grief might look like for parents and tender ways we can all respond to it, which leads us to our second takeaway. Make space for grief and grace. So there are various signs that we see in terms of how grief manifests both

psychologically and physically. When there's a loss, we could see daily functioning being interrupted, which includes the inability to sleep through the night. Sometimes people experience dreams, dreams of their child, dreams of being pregnant, even the fantasies and their wakefulness as to what it would have been like had their child survived. And so there could be a lot of things that mentally go on that feel like intrusive thoughts. That constant mental replay can be really hard to deal with, especially if you have to continue on as if everything is normal, like showing up for work or raising other children. But the thing is, grief looks different for everybody.

And so some of it could look like uncontrollable crying. Sometimes for other people, it could feel like they want to cry, but they can't actually cry. And that could be very frustrating for individuals because it may seem like they don't feel the loss if they're not physically showing the signs of the loss. Something that I feel like we can all relate to, especially in the middle of a global pandemic, is that no matter how hard we might try, grief doesn't fit neatly in our Google calendars.

Grief has a schedule of its own. And not only is that okay, it's absolutely normal. One idea for parents might be to establish a support word with loved ones or even co-workers to let them know when you could use extra support or space. Sometimes when people are grieving pregnancy loss, not only is the person who was carrying the child grieving, but also the people who supported that parent at the time of the pregnancy and the loss. So that impacts the co-parent, that impacts at times the other children in the household. That was the case for Yvonne, a wife and mother out in California.

Back in 2009, Yvonne was looking forward to having her second child. But at around four months, she lost the baby. Over the next 10 years, she would suffer seven more miscarriages, back to back. And the thing is, it wasn't just Yvonne mourning by herself. She also had a young daughter who was grieving too. So I have to not only take care of myself and my mental health, but take care of my daughters as well. And then knowing how to navigate with her. Like sometimes she may want to talk about it. She may want to draw a picture. She may want to draw a picture. She may want to write a letter. She may want not to say anything or she may want to talk to my sister.

These situations can be so nerve wracking and make you wonder, am I saying the right thing or will saying something make things worse? We asked Asha if there is such a thing as saying the wrong thing. Unhelpful language would sound like this. Aren't you over this by now? Didn't you tell me you've already grieved? You know, the ways in which people probe sometimes comes in the form of a question that sounds like judgment. However, Asha does have advice for more helpful, loving language that we can use instead. So I would ask people to

ask less questions, but if you're going to ask anything, just ask, how can I show up for you today? And let that be the thing that maybe you repeat ongoing because it may look different over time. Be the one who initiates contact with the person who's had the loss. And if the words aren't coming to you or you're still nervous about saying the wrong thing, our third takeaway is to be present. And there isn't just one way to be present or show up, you know? It can be dropping off a meal or offering a babysit or for your mom, Martina, it was as simple as a really thoughtful card. I have to say, I did receive a condolence card from a good friend at the time. I literally still have that card. It meant the world to me. Somebody is acknowledging my loss.

Somebody is acknowledging that I did carry two babies because, you know, everybody around me, it was like I wasn't pregnant with twins, right? So that card was everything to me. And even though she doesn't remember what the card said word for word 28 years later, my mom still remembers how it made her feel, which is what matters most. For Yvonne, being present looked like her mom and sister coming to spend time with her and her daughter. Like a lot of times when I didn't want to talk, I just wanted to cry, my mom would just come and just sit down on the bed with me and she just, she wouldn't say anything. Then I finished crying and then she'll leave. And that was the best for me that time.

She would sit there and she would pray for me. She'd hug me. She would rub my shoulder, even when she didn't know what to say just her presence like she was just there and with my daughter I didn't have to ask them to do anything for her she was already taken care of even if they can see on my face like mommy needs some time they take her to the park or take her shopping or take her out like I just I had that time and space when I needed them to be near and then when I needed them to be a little further from me. I really love the range of what being present can look like. And it doesn't have to cost a lot of money either.

Asha also reminded us about all of the administrative work that has to be done after a pregnancy loss occurs that, to be quite honest a pregnancy loss occurs that, to be quite honest, I had never even thought about before this episode. She mentioned things like returning baby items to the store or planning a small memorial or even creating a death certificate, which might be too much for the surviving parents to bear. So when we say there's a range of what being present can look like, we really do mean it. And parents, don't feel like you always have to wait

for a loved one to offer this support. If there is a certain type of way that you want your village to show up and be present for you, this is your time to be specific in your ask. For someone like my mom, knowing what resources were available would have made a world of difference. When we talked, she opened up about the kind of support she wished she had after losing my sister. Things like...

Therapy, a community of support in terms of, you know, talk groups. Support groups would have been so helpful. Fortunately, there are resources out there for people to tap into. That's our fourth takeaway. Explore your care options, including therapy, support groups, and doula services. And we should say that these options are by no means a comprehensive list and are in addition to medical care. To help walk us through some of these options, let's bring in Erica McAfee. She's a founder of Sisters in Loss, a digital community and podcast for Black parents navigating life after pregnancy and infant loss and infertility. I experienced two losses, a loss at 39 weeks and a loss at 18 weeks, both consecutively. They happened right after each other. So I knew then I didn't want anyone to experience a stillbirth or a second trimester loss like I did.

Erica wanted to create a space where she could have that community among Black women. So that's when Sisters in Loss was born. She's also a bereavement doula. I get a call every day. Every single day there is a baby who dies in the hospital. And can you just tell us a little bit about what a bereavement doula is? Because I have a feeling that some of our listeners may not actually know. Absolutely. Well, a doula in general is a non-clinically trained support person that supports clients, families before, during, and after birth, but a bereavement doula steps in and supports clients in any trimester. So if they lost the baby in the first trimester, if they experienced an abortion

or elective termination, or if they actually have a stillbirth and they want to walk through and have someone to navigate through welcoming this baby into the world and then having to say goodbye and preparing for a funeral. Doulas like Erica can really transform a family's overall care experience, regardless of a pregnancy's outcome. They can connect parents to online and local support groups, therapy, and other services you might need during the bereavement period. And the good thing is, families can choose to start working with a bereavement doula at any time, even if it's been months since your pregnancy loss.

And while awareness of and demand for their services are growing in the United States, there's still a huge exposure and coverage gap. And if you're like me and thinking about price tags right about now, know that there are options. Some doulas might offer sliding scales and payment plans or even barter services. A lot of the work for a lot of bereavement doulas is pro bono work.

You know, we do this out of the kindness of our hearts because we know what it feels like to be in those situations where we don't know what options that we have. If you think you or someone you know would benefit from working with a full spectrum or bereavement doula, there are a few places you can go to connect with one. Of course, good old Google is a great place to start. And there are several doula directories, including the National Black Doula Association, SistersInLoss.com. There you can search for and join doula groups in your local area and ask for recommendations. And I got to admit, I actually completed doula training last year.

So I know firsthand that Facebook is a great way for families to connect with doulas in their area. But you know, Martina, all of this is reminding me of something we've talked about a lot on NADL, and that's the fact that exploring these different care options varies greatly depending on who and where you are. The challenge, of course, is that when we're talking about a care model that is really occurring within a capitalistic system, coverage for these services can be challenging. So if we're talking about folks who are uninsured or underinsured, folks who are coming from communities that are historically marginalized and separated and have poor access to quality, community-centered,

culturally grounded healthcare more broadly, then thinking about what it means to access doula support services or mental health support services makes it even more challenging. Not impossible, right? But challenging. These barriers to care are real for a lot of families and can make it that much harder for families dealing with a recent pregnancy loss to get the kind of support they need and deserve. So for all the clinical providers and birth workers out there, our final takeaway is for you. And that's to work collaboratively within and outside the hospital to connect families to holistic care options. Here's Erica again. I believe bereavement doulas need to be integrated into every hospital system, every OBGYN practice, as well as every

birth center. For Dr. Parrott, working collaboratively with other birth workers and providers means that OBGYNs aren't the only ones making decisions about a patient's care. For me, integrated care means really putting the person with that experience, the person experiencing pregnancy loss at the center of the care model and building out from there. So it falls upon us as the health care providers to seek those services out in our communities because they exist. I know we're coming up at time, but we really learned some valuable things today. I agree. And I hope all of you listening feel the same, because really what we've been talking about today boils down to different ways that you can advocate for yourself or for those you love or care for when a pregnancy loss does happen. And while it's in no way an easy thing to do, we want to remind you that it is possible and you don't have to do it alone. So remember, start by acknowledging that loss and the weight of what that parent or family is feeling. Which is also a great reminder to give yourself the space and grace to grieve. And keep

in mind that for many family and friends, they'll also be grieving too, just in a different way. So be tender in your words and actions with one another. And if you are a loved one, find a way to be present, whether it's sitting by their side, assisting with paperwork, or sending a card. And remember, there's resources out there too, like working with a bereavement doula or attending a virtual support group like Sisters in Loss. For the providers out there, think about ways that you can work more collaboratively with others in your field to connect grieving families to valuable resources. Following their miscarriages and stillbirths, Yvonne, Erica, and my mom each gave birth again

to healthy babies. They're what's commonly known as rainbow babies. But the babies they lost will always hold a special place in their hearts. So we leave you with their words. If you're a parent or family grieving, may they offer you some comfort in your journey ahead. It may be simple as a ritual like lighting a candle on the day or the date that the baby passed, releasing some balloons in a social distance style gathering. Just by calling her her name, that's honoring her. I would say to do something that honors your babies that you lost and then that honors yourself because the fact of the matter is

whether you have a baby in your hands to rock or if your baby is not here, you're still a mom. If you liked this episode and want to hear more stories from Black birthing parents, check out our podcast, Natal. It's available wherever you get your podcasts. For more episodes of Life Kit, go to npr.org slash life kit. We have episodes on all sorts of topics like how to find a therapist, how to advocate for yourself at the doctor, or how to sleep better when you're coping with anxiety. And if you love Life Kit and want more, subscribe to our newsletter at npr.org slash Life Kit newsletter. This episode was written by us,

Martina Abraham-Zalunga and Gabrielle Horton. It was produced by Clara Lombardo, who is also our digital editor, along with Beck Harlan. Megan Cain is the managing producer. Beth Donovan is our senior editor, and Claire Marie Schneider is our editorial assistant. I'm Martina Abrahams-Linda. And I'm Gabrielle Horton. Thanks for listening. Whether you're looking to discover a new series to binge, find your next great read, or check out that movie everyone's talking about, NPR's Pop Culture Happy Hour podcast

is your guide to all things entertainment. Every weekday, we keep pop culture in high spirits. Listen now to the Pop Culture Happy Hour podcast from NPR.