Ep 227: Fighting Stillbirth with Elizabeth O’Donnell of Aaliyah in Action

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Addressing stillbirth can be a sensitive and challenging topic but it’s an essential one. Like with anything else in birth, it’s always better to learn about every possible outcome, even the ones you don’t want. Besides educating yourself, it’s important to listen to this episode because parents who have experienced stillbirth don’t deserve to suffer in silence. Avoiding their stories out of fear that it might affect your own pregnancy denies support to those who need it most. If it happened to you, wouldn’t you want others to hear your story?

Elizabeth started the non-profit Aaliyah in Action after her personal experience with stillbirth. Losing her daughter during pregnancy made her acutely aware of the system’s lack of support for grieving parents. In response, she stepped up to fill that gap, now offering the helping hand she wishes she would’ve had during that challenging time.

In this Episode, You’ll Learn About:

  • How Elizabeth channeled her grief into helping other families
  • How she learned about her baby’s passing and figured out the process for delivery
  • Why she still tried to stick to her birth plan and brought in her doula
  • Why Aaliyah in Action prefers to send packages to hospitals rather than directly to homes (though they do that, too!)
  • What comes in the self-care packages
  • What are some dos and don’ts for supporting those who have suffered a loss

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Transcript

Dr. Nicole (00:00): This is one of the most heartbreaking but also inspiring episodes that I have recorded. It's with Elizabeth O'Donnell from Aaliyah In Action and Warning, it involves stillbirth. Welcome to the All about Pregnancy and Birth podcast. I'm Dr. Nicole Calloway, Rankins, a board certified OBGYN, who's been in practice for nearly 15 years. I've had the privilege of helping over 1000 babies into this world, and I'm here to help you be calm, confident, and empowered to have a beautiful pregnancy in birth. Quick note, this podcast is for educational purposes only and is not a substitute for medical advice. Check out the full disclaimer drnicolerankins.com/disclaimer. Now let's get to it.

(00:58): Hello there. Welcome to another episode of the podcast. This is episode number 227. Whether you are a new listener or a returning listener, I'm grateful that you're spending some time with me today. Now, in today's episode of the podcast, we have Liz O'Donnell. She is a former elementary school teacher who now focuses on Aaliyah in action and stillbirth prevention and advocacy. Full-time. Aaliyah in Action is an organization that she founded after the death of her daughter, Aaliyah by Stillbirth. The organization provides women birthing people and families comfort as they take steps towards healing after the loss of their baby. They provide self-care packages for free to those who've experienced a stillbirth. Now, stepping into the nonprofit world and out of the classroom is a transitional Elizabeth never thought she'd be making, but since the death of Aaliyah, she realizes that her job as a mother is to establish a legacy for her daughter, while also supporting families down the same path in life.

(02:05): Her dedication to the development and growth of this organization is really, really admirable. She's done so much work to really grow it and support families all over the country, and it really is amazing what she's done and how she's made something so supportive and helpful out of real tragedy. So in this episode, we are going to talk about what happened with her daughter, Aaliyah and the stillbirth, what made her start Aaliyah in action, what is included in these self-care packages that families receive. You'll also hear her experience with parental leave after Aaliyah's death spoil or alert. They did not consider her as eligible for parental leave because she didn't have a live baby, so she actually had to fight for leave. After Aaliyah's death, we will share some bereavement resources as well as things to do and not do for someone who's experienced a loss. So without further ado, let's go ahead and get into this, again, inspiring but also challenging conversation about stillbirth with Elizabeth O'Donnell from Aaliyah into action. Thank you so much, Liz, for agreeing to come onto the podcast. I am excited to have you here and talk about the really important work that you're doing.

Elizabeth (03:32): Thank you so much. I'm so happy to be here. And also, I've been a listener since I was pregnant, so thank you for all the work that you do in this space for expecting parents.

Dr. Nicole (03:42): Thank you. Thank you. So why don't you start off a bit by telling us a bit about yourself and your work and your family?

Elizabeth (03:48): Yes. So my name is Liz. I'm originally from New Jersey, but I've been based in DC for, gosh, almost 15 years now in the nation's capital. I was overjoyed to find out that I was pregnant in June of 2020, unexpected, but still very much welcome. And we were very happy. I had an amazing pregnancy. I say to everyone, it was honestly the best time of my life. It was during Covid, which made things a little tricky, but we had great doctor's appointments, everything was wonderful. Had a beautiful baby shower, covid friendly baby shower with friends and family. And then towards the end of November, right after Thanksgiving, I noticed reduced movement, and actually I noticed increased movement first around Thanksgiving with my daughter and then decreased movement. And so I took myself to the hospital thinking I was being an annoying first time mom, only to be told that my daughter no longer had a heartbeat, which I just kind of went into shock. I didn't really say anything besides, what are you talking about? And I delivered my daughter Aaliyah, Denise Briscoe, very early in the morning on December 1st, 2020. And since then it has been a roller coaster just trying to recover as a mother that's experienced this and also trying to parent Aaliyah, which is why I'm here today.

Dr. Nicole (05:36): Sure, absolutely. Absolutely. So if you don't mind me going back for a minute, in that moment, we very often say the baby doesn't have a heartbeat when actually some of the data says we probably need to be not. We probably do need to be more straightforward and say, your baby passed away, or your baby has died inside in that moment, did you feel like, what do you mean there's no heartbeat? Can you find it? What are you talking about?

Elizabeth (06:11): Yeah, I remember I kind of knew when the nurse was searching for a heartbeat and said, oh, I don't think this is working. Let me go get the midwife. I could sense there was something wrong when she's searching for a heartbeat and then says to me, we cannot find a heartbeat. I don't remember if she had used other terminology after that because the only thing in my mind was, oh my gosh, what's about to happen? How did this happen? I was so low risk, nothing was wrong, everything was roses and rainbows. I realized it was going to be a stillbirth. And at that point, I didn't realize that this even still happened to people. I thought maybe I could get a quick C-section, be out of there and figure out what to do next with my life. That is not how it works. I learned very quickly. So in those moments, just trying to figure out and saying to myself, okay, you are going to have to do every single thing that you were planning on doing, except the outcome is going to be the complete opposite of what you ever could have imagined. And that's exactly what happened.

Dr. Nicole (07:35): Yeah, yeah. So how was the induction process for you, and how do you feel like the staff treated you?

Elizabeth (07:44): I have to say the staff, and I know this is not everyone's experience. The staff I had at GW Hospital, they were outstanding. I'm still very close to many of them today. Aaliyah's father could be present and our doula could be present, which was very important to me because my brain was not working. I knew his brain wasn't going to be working. So we needed somebody that knew how to advocate and help us when we didn't know how to help ourselves. I wanted to stick to the tentative birth plan as much as possible, which was unmedicated. I did the best I could, and my body was just between the stress and everything. My body was just not responding. So after a day and a half, I finally said, okay, fine to an epidural, because I just couldn't be there anymore. I couldn't deal with it. And it was just a few hours later that I ended up delivering her.

Dr. Nicole (08:54): Okay. That's interesting that you wanted to adhere to as much as you could including an unmedicated birth.

Elizabeth (09:02): I did. I look back on it now and I'm kind of like, I would've saved myself a lot of pain had I not done that, but I wanted to stick to the plan one because that's just the type of person I am, but because that's what I wanted for my child.

Dr. Nicole (09:21): Sure.

Elizabeth (09:23): And I still wanted to go through that as much as possible, but I do realize there are so many other factors that come into play when you experience this, and I appreciate my doula for telling me it's whatever you want to do. But then at a certain point also saying it's okay if you want to switch it

Dr. Nicole (09:43): Out. Absolutely. Absolutely. So now not everyone takes this sort of tragedy and then turns it into what you've turned it into, which is Aaliyah in action. So tell us a bit about what Aaliyah in action is, and then I really want to hear what made you make that leap to create it. So first off, what is Aaliyah in action?

Elizabeth (10:06): So Aaliyah in action, we are a nonprofit based here in dc, but we support families all over the country. We provide self-care packages to families after loss. So the key word here is self-care for you, the mom, the birthing parents. I kind of make a little joke and I say, this is not about the baby. It's about the person that needs to make it to tomorrow, when quite honestly, you don't always want to make it to tomorrow. And so what are we doing for ourselves? So these packages have six small self-care items, lip balm, a face mask, because when you're crying, you're going to need those things, fuzzy socks, a candle. We have lavender shower steamers to kind of, when you remind yourself to take a shower, you can create a peaceful experience. We have tea from an amazing doula here in dc and then I also include what I call the self-care choice board, and it kind of looks like a bingo board, if you will.

(11:17): And it has little acts that incorporate the package and that you can just do around your home. And the idea is that you can cross one off each day and say that you did something. So it's literally drink a glass of water, take a shower, move your body, say your baby's name out loud, just little things that you can tick off, okay, I did that. I accomplished something. And it might not seem like a big deal in the moment, but further down the line, my hope is that you see that by forcing yourself to do something for yourself, each day has helped you, I don't even want to use the word stronger, but in some ways has helped you become a little bit stronger and begin to figure out this new life exactly what it is. Nothing. I say I am Liz before Aaliyah, and now I'm Liz after Aaliyah. And those are two completely different people.

(12:26): And the last piece of the program with our packages is we have support books for the family. So for me personally, I was not someone that was very drawn to support groups, and I kept thinking, I'm sure I'm not the only one that feels like this. So what are we doing for people that are kind of in that in-between still figuring it out. So we have a book for the Birthing Parent. We have a book for fathers and a children's book for living siblings. I always say, I'm going to put a plug here. I am looking for a more inclusive book for non birthing partners that delivers the same amount of support that the father's book does. And it's really slim Pickens out there, but if anybody has a book, please let me know because looking to add that to our library. Okay.

Dr. Nicole (13:26): Now, and maybe this will come out in some of your story about what happened after you gave birth to Aaliyah, but tell me about what was going on in your mind and how you were feeling and what led you to get to this point where you felt like you needed to start this organization?

Elizabeth (13:44): So honestly, this organization was born from pure anger, and I'm very honest when I say that nobody should ever be worried about having to tell your employer about what's happened to you after you experienced this. However, upon leaving the hospital, that was the only thing that was on my mind. I was a teacher in Washington DC and I very quickly was told that once I shared what had happened, that my paid family leave was revoked. And not only that, my F M L A was also canceled and that I had to return to work. So if anyone's delivered a child before, you know that that's not easy.

Dr. Nicole (14:35): That is. So they were like, you need to return to work

Elizabeth (14:41): Whenever

Dr. Nicole (14:42): There's no leave because you don't have a baby that you brought

Elizabeth (14:45): Home. Yeah. The wording was quite crass and essentially in so many words, said, I'm sorry, but no baby, no leave. And those were the words that I was reading less than a week after delivering my dead daughter. And the additional trauma that caused it sent me in a tailspin, and it put me in a very dark place. Not only am I trying to figure out how to manage the grief, the stress, anxiety, the blame from what's happened, but now my employer is also putting stress and blame and anxiety on me. And I froze up. I didn't know what to do. I was reading this legislation over and over again, and I was like, I really think I'm right, but I don't know if I'm in the right frame of mind, but I really think I'm still eligible for this. And so I sought counsel immediately to try to get them to understand. It kept coming across as I felt as though they didn't understand that I still delivered a baby.

Dr. Nicole (16:03): You still went through the physical process and you still needed to recover from physically delivering a baby.

Elizabeth (16:09): Exactly. And this particular piece of legislation at the time, it has since been changed because of all of this, but it didn't include or exclude me. It was strictly up to the employer to decide, are we still going to give her this leave that she's already approved for, or are we going to take it away? And that invalidation of my motherhood and complete disregard for my daughter's life spurred me to get into action and try to figure out, I surely can't be the only person going through this. I decided to post a picture of me holding Aaliyah in the hospital, and before I knew it, that picture took on a life of its own. And I had thousands of mothers that have experienced stillbirth reach out to me. And I was floored that so many people were going through this silently. So many people within my own place of employment went through it, had their leave revoked, and were honestly too scared and felt too broken to fight it. And I'm from Jersey, so that's just not me. It's

Dr. Nicole (17:32): Not going to happen. Yeah, I'm not the one. Right.

Elizabeth (17:39): It was hard and it was dark. It was very dark. Some people have said to me, you have made this look easy. How have you done it? Now it's been very dark, but I knew I had to because all of these thousands of other mothers were dealing with the same thing. And it made me sick to think of it. So that is how Aaliyah and he was born, because I kept thinking, what are we doing for us? And the answer in this country is not much very much that if this can be a little piece of giving permission, and I forgot to mention earlier, we distribute these packages through our hospital partnerships, largely through our hospital partnerships. And the importance of that to me is if a hospital is presenting a family with this package, it gives them permission. It's kind of like, okay, well, if a nurse tells me this is going to help you, you should use this. I'm more likely to listen to that as opposed to receiving it in the mail, which we do ship hundreds of packages to people. But the original intent was, if I receive this package, I might not use it if someone gives it to me because I don't feel worthy.

(19:10): And that is how so many of us feel. That is how my employer made me feel 10 times more than I already felt. Right. And I wanted to try to eliminate or you can't eliminate to alleviate those feelings as much as possible. And that's how I got this going.

Dr. Nicole (19:32): And I think this is so important because I think we do a reasonable job in the hospital of creating a care package centered around the baby with pictures and maybe an outfit and footprints and a box, like a memory box for the baby. But we really don't give anything for the healing part of the mom. So I think it's really important to focus on what she's going through. And we know that postpartum care in the US is abysmal after you have a live baby that you bring home. So it's only worse when you don't have a live baby. And it's kind of like, okay, come back in however many weeks or come back in a week to check up on things. What do you feel like your care was, at least from the medical perspective, after you had your baby?

Elizabeth (20:30): So my first follow-up appointment, I wish as a country we could do something about having parents that have just experienced loss when they go for their follow-up, not be in the same room as a bunch of very pregnant people. So that was a trigger. I wanted to go by myself. I had friends offer to go with me, and I wanted to do everything on my own, which was probably not the best idea, but I went by myself. And the very first thing the nurse asked me was, oh, well, where's the baby? And I said, she died. She goes, oh, okay. So why are you here? Do you need birth control?

(21:19): And I said, I'm here because my midwife told me to schedule. So now I'm thinking, wait, did I do this wrong because I know my brain's not working. So I'm like, oh my gosh, maybe I shouldn't have made an appointment. I'm like, get me out of here. I'm thinking these crazy things in my head. And she was just writing on her paper the whole time, barely looked up at me. So I was like, okay. It was the same feeling I felt after I heard the words. There's no heartbeat. Okay, I'm here. I just got to do what I need to do and then I can leave and I can go home and I can break down and whatever. So my midwife came in the same midwife that was there during Aaliyah's delivery, who I love her so much, and I told her, I was like, I have to tell you this. This is what just happened, and why didn't she know? Or am I even supposed to be here? Right. My midwife did know what to say. She just hugged me and she just hugged me, and I was texting my friend. I was like, I can't believe this woman just said this to me. And I understand that nurses are very overworked and stressed, but we have to do better in terms of, yeah,

(22:40): It's not excuse,

(22:41): Because again, it's another layer of trauma. Sure. Well, my baby's not here. She's dead. Why do I have to say that out loud? You should just know that. So that was not the best. However, my appointment with my midwife was amazing. My follow-up with an M F M, because at this time we're trying to figure out what happened. They told us in the hospital, they explained autopsy, which not all parents are explained that which is wrong. I know most elect to not do an autopsy, but you should at least be educated on that option. In those moments, we elected not to because they said they would kind of look her over, and if they saw something that might autopsy might be able to explain, then perhaps we should consider. They didn't see that everything with Aaliyah was akay. I was a little disappointed when meeting with the M F M who basically said, sometimes babies just die. Lightning usually doesn't strike twice. And Aaliyah, there was a small placenta, had a small placenta, but she was quite large. So that doesn't matter. So at the end of that appointment where I thought I was going to get some answers,

(24:03): I left with nothing. And it wasn't until we sent the placenta pathology to a private doctor that we were able to find answers about how a small placenta contributed to her death. But not all families can do that. Not all families even know that you can do that. And so many families are left wondering for the rest of their lives, why did that happen to me? Did I do something wrong? How do I know it's not going to happen again? And that it is just not fair and again, adds another layer of trauma and stress that we don't need.

Dr. Nicole (24:44): Sure, sure. Absolutely. Absolutely. Okay. So you did say that with the, just getting back to Aaliyah in action with the care packages that mostly you go through hospitals, but if people wanted to send one to someone that they can.

Elizabeth (25:02): Yeah. So our website is aaliyah in action.org, and there's a little boxer that says, if you would like to request a package for a loved one or yourself, you can absolutely do that. All I need is an address. I, at this point now have been getting more self request packages from people as opposed to packages for loved ones. And I welcome you emailing me and sharing a little bit of your story. If you're comfortable. I now have a warehouse for all the Aaliyah in action stuff, so I can ship it out. I either ship it out or my mom ships it out, and we'll get it to you as soon as possible because that immediate support is very important. And then on the other side of things, I've actually sent out many packages for people where it's been years since their loss, but grief has no timeline. And so while the original intent here was giving it immediately, I've also been finding out that it's had a huge impact on people that have received it years later because those grief days still hit. It doesn't matter how long ago it happened, those days still hit. And if you can reach from something for something that was made, especially for you in this time, I hope that that can be comforting to people.

Dr. Nicole (26:34): Yeah. Yeah. And then also getting back to the parental leave issue, how did that come about to change? Did you speak out about it or talk to your representative? How did that come to change? Because

Elizabeth (26:53): Ridiculous, a lot of people were calling D C P S and a lot of people, that's the public school system, and a lot of people were calling the city council. And the city council ended up calling me

(27:09): And said, we are so sorry about this. I did a lot of local media in dc. I have so many journalists to thank for that for amplifying my story. And it first led to an emergency bereavement bill, and that bill immediately provided was retroactive to December 1st and provided 14 days leave for families that experienced stillbirth. Now, I always like to say it's very important that we separate the mental health aspect of this from the physical recovery of the body after birth. And so while I was grateful and thankful that they did that as a quick remedy, I am not talking about mental health in this at all as it relates to the leave, because that is a separate, much larger issue. So that was a nice gesture. And it also applies to families that experienced loss of a child through age 21. Later on in the year, the Universal Paid Family Leave law for DC was amended to include stillbirth.

Dr. Nicole (28:29): Okay.

Elizabeth (28:29): So now that bereavement bill doesn't really apply to stillbirth parents anymore the way it did initially because the leave for perinatal loss is now built into it now explicitly says that you still get the leave if you experienced this, as opposed to it was very not clear before, which was the problem.

Dr. Nicole (28:53): Now, speaking of resources and things for people who have a loss, what are three or four? I know you also have some resources on your website. So what are some top resources that you think are great for people who have experienced a pregnancy loss?

Elizabeth (29:08): So there are many doulas I know here in dc it's a city, so it's a little bit different, but I know a lot of doulas do bereavement sessions with families, most of them at no charge. So if you are looking for a resource like that, that's more one-on-one, I highly suggest to Google some things if you think a support group might be good for you, R to Z, hope is amazing. They

Dr. Nicole (29:40): Have, is it R two Z?

Elizabeth (29:41): R T z?

Dr. Nicole (29:43): Oh, r T z. Okay. Yep.

Elizabeth (29:45): R T Z, hope. And they have very specific groups. So depending on your family, how your family looks, depending on what you need as a griever. Kylie does an amazing job there with just having a variety of groups for people. Sisters in Loss is another great organization that she has a lot of, Erica has a lot of resources on her website. And then if you're thinking about going through pregnancy after loss and taking the journey of pregnancy, again, I'm also a director at Push for Empowered Pregnancy where we focus on ending preventable stillbirth. And we have a plethora of resources for pregnancy after loss because we know that that is a very difficult journey. It's not a journey I've experienced yet myself, but I have a lot of friends that have, and we have so many resources on the push pregnancy.org site to help you navigate pregnancy after loss.

Dr. Nicole (30:53): Sure. Okay. Okay. And do you have any other children? You said you haven't had children since Leah, but do you have any other children?

Elizabeth (30:59): I don't, no.

Dr. Nicole (31:00): Okay. All, I mean, you can totally say you don't want to answer, but do you think you want to have other children?

Elizabeth (31:08): Yes. It's scary. It's really scary. I think it's extra scary for me because there was absolutely nothing wrong the whole time. So I wouldn't even know what to look for, or the only way I knew something was wrong is because it was too late.

Dr. Nicole (31:31): Sure. Got it. Got it,

Elizabeth (31:33): Got it. And that, yeah, it's

Dr. Nicole (31:35): Scary. Yeah. Yeah. So for people who I think in our society, we very often don't know what to say or what to do when people experience a pregnancy loss at any point in pregnancy, whether it's a miscarriage earlier in pregnancy, whether it's a stillbirth later in pregnancy, do you have any suggestions for what are two or three things people can say or do to someone who's experienced a loss?

Elizabeth (32:05): Absolutely. I think acknowledging the loss and not skirting around it is key. Say their baby's name. If they've chosen to name their baby or chosen to share that name, say their baby's name, often not just once, say it a lot, because those are the only times we as parents are going to hear our child's name. We're not going to hear them being called at school. We're not going to hear them. Those are the only times we hear our kids' names. So say them and say them often.

(32:40): I know it's very common for anyone when there's any sort of death in the family. Okay, what do you need? What can I do for you? We don't know. Just do something, whether that's just sending dinner or just, I had a friend literally just drop off basic target cleaning supplies or something, just like, Hey, if you need any of this stuff, I just left it on the front porch. It goes such a long way. And also when you're checking in with a loved one that's experienced this, I like to always say at the end of whatever you decide to say, always say, it's okay if you don't answer. I just want you to know I'm thinking about you, because it can be pressure from us to want to respond the right way and still seem thankful and grateful, even though we we're just feeling so depressed and just leaving a lot of space for the parent to share what they want, but making sure that you are fully acknowledging that their child was a human. And when we're getting invalidated from our employers, it's important that our friends and family are validating our child.

Dr. Nicole (33:57): Absolutely. Absolutely. So then are there a couple things on the flip side that you're like, please absolutely. Do not do this for someone who's experienced

Elizabeth (34:08): A loss? Yes, absolutely. And unfortunately, there's a much longer list for that. I won't say everything.

Dr. Nicole (34:14): Okay, go for it. Yeah.

Elizabeth (34:16): I think the main two things in terms of language and what we're saying and how much words matter, it doesn't matter, in my opinion, it doesn't matter the religious beliefs of any family. I would advise everyone to steer away from saying it was God's plan. God willed this. I would just steer away from that, unless of course the parent is initiating that language, but I would venture to say probably they are not using that language. And so you should not either. I also just anything with, oh, now that you know can get pregnant, you can get pregnant again. Or maybe it was for the best. Maybe there was something wrong with the baby. No, that just leads to self-blame and encouraging or saying, well, at least you got pregnant. You can get pregnant again. Puts pressure on a parent because now they feel, oh my gosh, is everyone going to think that I'm just going to get pregnant again? Going through another pregnancy is not going to replace this one. The future children that I have will never replace Aaliyah.

Dr. Nicole (35:31): Absolutely.

Elizabeth (35:32): And so language with that really matters. And then this is just one that I feel people don't think about. Don't send flowers, interesting flowers. Dieing flowers die just like our babies did. And flowers, they don't last forever, and they're beautiful. Flowers are beautiful for a weak tops, and then they're gone. And that can actually stir up a lot of emotion and also kind of frame future flowers to always bring them back to that time period.

Dr. Nicole (36:12): Got it.

Elizabeth (36:12): Got it. And I know it's such an easy thing to do, and we always send flowers for funerals and all of that, but instead of flowers, I would say an Uber Eats gift card, or better yet, I would have people just sending a pizza to the house, and then you don't even have to think about it. So if you wanted to do a little gesture like that, I would just steer away from flowers. Okay.

Dr. Nicole (36:36): Okay. Okay. I never thought about that. Never thought about that. So are you still teaching, or do you do Aaliyah in action

Elizabeth (36:44): Now? I am not no longer teaching. I run Aaliyah in action, and I'm also a director of awareness at Push Pregnancy. And so those two endeavors keep me quite busy, I'm sure. And I like to say it's, I should have a two and a half year old running around here right now, driving me crazy. These two organizations are also driving me crazy in a way that I want them to. Right. Just like if Aaliyah was here doing that, it's a way that you want them to. So yes, both of them keep me busy. And today is actually the second anniversary for Aaliyah in Action, and we have provided over a thousand packages to families and have almost, we have 39 hospital partnerships. So all of that in two years has kept me quite busy.

Dr. Nicole (37:42): Sure. So what is the most, as we wrap up, what's the most frustrating part of this work that you do?

Elizabeth (37:48): Oh gosh. Okay. I guess initially the most frustrating part was simply not knowing the rate of loss. That has always surrounded me. I just didn't know I was in a little bubble. I think what's most frustrating is every, it seems like every parent I talk to, they're like, I didn't know this still happened.

(38:14): And that's why learning about ways to empower yourself in pregnancy is so important. Knowing that stillbirth still happens is so important. It's not meant to scare you. It's meant to just educate you. And it's very frustrating hearing the same story over and over again because it doesn't need to be like that. And other countries, I was just in England for the International Stillbirth Alliance Conference. It's very frustrating to see how other countries have very strong nationwide programs and guides on stillbirth prevention, on perinatal bereavement. And our system here is still broken. And also within that, not willing to learn from other countries that have made strides to reduce stillbirth rates or to make sure that they are properly caring for parents that have experienced loss. That is very frustrating. The day-to-day of Aaliyah inaction fulfills me, although I wish I didn't have to do it, it comforts me to know I can comfort other people, but I don't think Aaliyah in action should be as needed as we are. And if we can switch that, I hope that one day I have to change the mission of Aliyah in action because people won't need me. That's the goal.

Dr. Nicole (39:55): Exactly. Exactly. So then on the flip side, what's the most rewarding part of your work?

Elizabeth (40:00): I think the most rewarding part would be that I can still parent. This is me in mom mode. And when you're in the hospital thinking, oh my gosh, I had planned out all these vacations in my mind. I had planned out teaching Aaliyah how to read and all these things we were going to do with friends, with kids this day and age. That all disappeared. And it felt like there could never be anything rewarding in my life again, and this is a different type of rewarding, but I feel, I don't want to say happy, but for lack of a better word, happy that I have been able to figure out a way to still parent my daughter, still make her name known, still give her a legacy despite the fact that she's not here.

Dr. Nicole (40:55): Sure, sure, sure. So then what's your favorite piece of advice that you would give to someone who's either pregnant or experienced a stillbirth? What piece of advice would you give?

Elizabeth (41:08): I think for those of us that have experienced stillbirth every day, it's okay to have waves. Every day is different. It's okay to allow joy to creep in every once in a while. It's also okay to lay on your couch and cry all day. That's why we have the packages to help you on those tough days. Grief does not end. And I think my biggest piece of advice that, again, this is all what I'm hearing from families that I've interacted with is people don't get to tell you when you can stop, when you should stop grieving or when you should get over this. There's no getting over this. This is a piece of who you are. And I think the earlier we can reluctantly embrace that, then the stronger we can connect with our baby and the stronger relationship we can build with them, because it's not going to change, right? They're gone. We can't do anything. Don't listen to people that are telling you to get over it or get pregnant again, or stop crying. This is your decision. And when we experienced this loss, we've lost all control and we just feel like, oh my gosh, I was so in control and now I'm not in control of anything. You are in control of your grief journey, not anybody else. And so I want people to really embrace that as much as you don't want to embrace it, because it will help you create that stronger connection with your child in the end. Absolutely. Is how I feel and how I look at it. Absolutely.

Dr. Nicole (42:58): Yeah. Yeah. So where can people find your support, Aaliyah, in action? Because you rely on donations, is that correct?

Elizabeth (43:06): Yes, we do. We're completely donor funded.

Dr. Nicole (43:10): So

Elizabeth (43:12): The reality is hospitals do not have bereavement budgets, and if they do, it's more for training programs as opposed to a tangible bereavement like this, which is why our donor base is so important. Our website is www.aaliyahinaction.org. Aaliyah is spelled a L I Y A H, and we're on all socials and LinkedIn and soon to be threads at Aaliyah inaction. So you can find us there, us there. And if you're in need of a package, please reach out. I respond usually day of, I mean, I'm always on my laptop, so respond so that we can support you. And I highly encourage anyone in the hospital setting reach out to me so that we can partner. I try to make it as easy as possible for our hospital partners to implement the program. And if you are interested in being a donor or interested in honoring your child, honoring your baby through a partnership with the hospital, please let me know. I want this to also be a support for parents to be able to use in honor of their child as well.

Dr. Nicole (44:26): Sure. Sure. All right. Well, thank you so much for the work that you do for coming on and sharing your work. I really, really appreciate it.

Elizabeth (44:35): Thank you, Dr. Nicole. And again, thank you for all you do in this community for expecting parents. It's really appreciated. Thank

Dr. Nicole (44:42): You.

(44:50): Okay. Wasn't that just really a great episode? It's just amazing that she was able to create this resource out of tragedy and pain and help so many other families in the process. Now, after I have a guest on, I do something called Dr. Nicole's notes where I talk about my top takeaways or thoughts regarding the conversation. Here are my top takeaways from my conversation with Liz. Number one, I want to share with you a resource. I have a podcast episode on stillbirth. It's episode one thirty nine. That's dr nicole rankins.com/episode 1 3 9. And in that episode, you can learn about what is stillbirth, how common it is when it's most likely to occur, risk factors, what are the most common causes? Some strategies for prevention. I know it's a difficult, difficult topic, but you can check out that episode to learn more about stillbirth. The second thing that I want to say is that it can be really frustrating because we often are usually don't know the cause of stillbirth.

(45:54): Most of the time it is actually unexplained. There are some things we can do. There are some tests we can try. We can look at the baby, we can examine the placenta to try and get an idea of what happens with stillbirth. But most often it is unexplained. And that can be the most difficult part for families not understanding why it happened, because it doesn't give you any resources to try to prevent it again in the future. But I want to be upfront and honest about that, that it's just something that we don't know why happens most of the time. The third thing I want to say is that support from the medical community is just not great Surrounding stillbirth. We often have things in the hospital where we do pictures for the parents and things like that. Chaplain services, if you're religious, those things are available.

(46:44): She started this specifically for the parents. And then after they leave, because there's just such a lack of resources in the community, you may not be seen by your OB still for that typical six weeks. They may or may not connect you to therapists or support groups or things in the community. So the support from the medical community is not great, and that's why resources like what she's doing and bereavement resources are really important. Do check out her website. It's aaliyah in action.org. That's a L I y A H I A C T I O N. So aaliyah in action.org to find out resources, because sadly, you're not going to get a lot of resources from your physician. And this is also a great place to get resources for people who you unfortunately may know have experienced a pregnancy loss at any point in pregnancy.

(47:37): And the final thing I want to say is just reiterate some of the things she said about what to say and what not to say for someone who's experienced a loss. I think one of the ones that can be particularly painful for people is saying things happen for a reason. Or, you know, can get pregnant again in the future. Those things really aren't helpful. And I know it can be challenging to know what to say to someone who's experienced a loss. I get that. But what I would suggest is that you just show up and you say that I'm here if you want to talk, or if you don't want to talk, drop off a meal. Those kinds of things, just do the best you can come from a place of caring and supporting in your heart. You can even say that this just sucks.

(48:24): Just acknowledge that this sucks, or acknowledge that you don't know what to say, but you want to be there to help and support. But stay away from things like they happen for a reason, or you can have babies in the future, that kind of thing, because those things really aren't helpful. All right. So there you have it for this episode. Do share this podcast with a friend. It helps me to reach and serve more pregnant folks, and I would really appreciate your help in doing so. Also, subscribe to the podcast wherever you're listening to me right now. Leave me a review on Apple Podcast to help other women to find the show. And I love to hear what you think about the show. And you can also let me know what you think by reaching out to me on Instagram. My dms are open. I'm on Instagram @DrNicoleRankins. I love to hear ideas for the show. I've gotten some really great dms recently about ideas for the show that I'll have coming up, so you can also get great information there on Instagram. So check me out there at @DrNicoleRankins. So that's it for this episode. Do come on back next week and remember that you deserve a beautiful pregnancy and birth.