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Stephanie speaks with Lindsey Wimmer from the Star Legacy Foundation about perinatal loss and pregnancy after loss. Lindsey is a pediatric nurse practitioner certified in Perinatal Loss Care. She lectures throughout the US on loss, specifically about opportunities to improve stillbirth prevention and care. Perinatal loss is devastating, and families often struggle to talk about it and get the support they need. This episode provides resources for families, including ideas for honoring your baby and how to talk to others about your loss. A word of caution, this episode may be triggering if you’re currently pregnant or have experienced loss.
We’d like to say a special thank you to today’s podcast partner: Rasa. Rasa’s coffee alternatives contain no common allergens, no fillers, & no BS. Perk up + chill out at the same time with their organic, adaptogen-packed herbal blends. Use code WHOLEMAMAS for a one-time discount of 20% off your entire purchase at wearerasa.com.
Lindsey Wimmer 0:04
So many times families will talk about having to put on the mask. At a certain stage they’re expected to put on this mask and project, the idea that they’re better, everything is good, they’re in a happy place. And number one that’s not realistic. But number two, it’s a lot of work to pretend when your heart is hurting so bad.
Stephanie Greunke 0:26
Welcome back to the Whole Mamas podcast. We’re here to give you tools, resources and evidence based information so you can make the best decisions for yourself and your family. Whether you’re trying to conceive or navigating life with a toddler or a teenager. We’ve got you covered. I’m Stephanie Greunke, registered dietitian and program director for Whole Mamas Club. I’m also the co-creator of Whole Momas pregnancy program. And my co host is Dr. Elena Roumell, pediatric naturopathic doctor and creator of med school for moms an online resource where she teaches moms how to safely be a doctor mom.
Before we begin the show, I want to thank our podcast partner Rasa, founded by a momma in Boulder, Colorado. Rasa is a line of adaptive genic coffee alternatives that provide regenerative energy and fill the well within. We’ve heard from many of you that you want to get on board with a coffee alternative, but you haven’t been a fan of the other options that are out there. That’s why we’re so excited about Rasa. Believe me, I’ve tried all of the coffee alternatives out there to quench my craving for something warm and bold in my morning cup. I was reluctant to try another one, but when I saw that Rasa included some of my favorite herbs like dandelion and burdock, which support digestion and liver health, and adaptogens, I decided to give it a shot and now it’s a brand that I can really stand behind. You’ve probably heard us talking about adaptogens, on the podcast. Adaptogens are basically nature’s antidote to the stressors of modern life. They’re trending right now because we need them more than ever in our world of constant stress, disruptive sleep and the endless pressures to do more and be more. They provide supplemental support while we’re working on the other things to mitigate the stressors in our life. There are three versions: the original has zero caffeine, cacao has five milligrams and dirty has 35 milligrams. If you’re working on lowering your total caffeine intake to support your adrenals, this product offers a solution that fills your cravings for a couple something warm and helps you enjoy your morning ritual. And many moms in our community swear by it. They were finding themselves reaching for a third or fourth cup of coffee. They needed more energy but didn’t know how to get it other than another cup of coffee. They found that they were able to significantly cut back on caffeine and the transition to less caffeine was much easier than they thought when they added in Rasa. If you’re interested in trying it out for yourself, we have a special discount code for you. Head over to wearerasa.com and use code WHOLEMAMAS in all capital letters at checkout for 20% off your first order for new customers only. Before we start the show, I just want to let you know that this episode talks about sensitive topics like pregnancy and infant loss and may be triggering to you. Especially if you’re currently pregnant or have experienced loss. The information is incredibly valuable, so I don’t want to scare you from listening. But it’s worth noting that it may be hard to listen to if you’re feeling vulnerable to this sensitive type of information, or if you’re still navigating deep emotions.
All right, let’s welcome Lindsay to the show. Thank you so much for coming on our show today, Lindsay. I wanted to have you on our show to discuss perinatal loss and pregnancy after loss, something that is devastating for families. At the same time, it can be really hard to talk about and get the support you need. And you’re certified in perinatal loss care and you lecture throughout the US on loss. Specifically about opportunities to improve stillbirth prevention and care, which is something that we haven’t covered on our podcast. So I’m really grateful to have you here today on our show to help us understand what we can do to support our physical and emotional healing after loss. To share resources. Let us know how we can support friends and family going through a loss and help us understand how we can approach future pregnancies after a loss. But before we begin, we’d like to start with our opening question, which is, how did you nourish yourself today? Or how are you going to nourish yourself today?
Lindsey Wimmer 4:13
Ah, it’s a great question. I actually have a bike ride plan with my husband for later this evening after we’re both off of work.
Stephanie Greunke 4:20
Oh, that’s sound good. Do you go around your neighborhood? Or do you go on a specific trail?
Lindsey Wimmer 4:24
Yeah, we actually have some trails along the river very close to our house. So that’s where we usually go.
Stephanie Greunke 4:30
That sounds like so much fun. We used to go bike riding a lot. But my husband, he had some surgeries on his arm and his shoulder and we haven’t picked it back up. We’re moving to was to Madison, Wisconsin next year, and that’s apparently one of the largest biking cities in the country. So we’ll definitely have to get back on the bike and figure out how to do it all over again once we move there.
Lindsey Wimmer 4:53
Stephanie Greunke 4:54
So what I’ve been doing and what I did last night is I go to bed really early. And it feels like such a treat going to bed at 8:30 or 9. I used to be really embarrassed about it, but now I just love curling up in bed with a book and reading and falling asleep well before 10pm. And that it was hard to do at first because I felt like I was missing out on so much like I wanted to spend more time with my husband in the evenings or wanted to catch up on all the stuff that needed to get done around the house. But it feels like such a luxury crawling into bed early these days and waking up refreshed. So that is what I did last night. And I’m really enjoying it.
Lindsey Wimmer 5:33
Stephanie Greunke 5:34
Yeah. So let’s get into who you are. And talk a little bit more about the nonprofit organization that you work for the Star Legacy Foundation because your foundation is relatively new to me. I saw that you were doing a webinar about perinatal loss and that’s how I got connected with you. So I want to make sure that everybody knows about you and then what the Star Legacy Foundation is.
Lindsey Wimmer 5:58
Sure. So Personally, I’m a pediatric nurse practitioner by training and I am also the mother to a stillborn baby. My first child was stillborn at 38 weeks in 2004. So we’re coming up just very close to what would have been his 15th birthday. And so the Star Legacy Foundation actually has been a great way for me to combine my personal and professional passions. Our main focus is providing research and education around perinatal losses. Because we know that these devastating, poor pregnancy outcomes are very poorly researched. And while we’re making progress there is certainly so far yet to go. And we also provide a lot of family support programs and do our best to educate the community and health professionals about how to provide ideal bereavement care. Our vision really is that we want to prevent every one of these losses possible, and then make sure that families have the optimal care available when prevention isn’t possible.
Stephanie Greunke 7:00
Well again, I’m so sorry about your loss. But is that something that you feel is really feeling your passion right now? Do you feel like having that experience allows you to really excel in what you’re doing and, gives you that drive to go into work every day and to help spread this information?
Lindsey Wimmer 7:17
Yeah, absolutely. Because it, it’s a way for me to continue to parent him, and to me looks different than how I parent my living children. But it is a way to to be able to provide and fulfill some of that parenting need that I have. But I also think it kind of puts me in a in a position to really hopefully effect some significant change because I have lived, you know, the life of the healthcare professional, and I know what that environment is like and some of the pressures and challenges that those individuals face. But I’ve also lived the life of a bereaved parent and know what that all entails and how that navigation can be very tricky as well. And there’s so much that both groups can learn from each other and because it’s such a sensitive topic, a lot of times there’s not a lot of good communication happening. And so I really feel like hopefully, having a foot in both of those worlds can help be more effective for both working with families and with the health professionals.
Stephanie Greunke 8:14
Yeah, I feel like you’re such a, you’re a gift to this world with the personal and professional knowledge that you have and can carry into this field. So just want to thank you for the work that you’re doing. It’s so important.
Lindsey Wimmer 8:27
Oh, it’s my pleasure.
Stephanie Greunke 8:28
So the topic that we’re going to explore today is perinatal loss and pregnancy after a loss but I think it’s important to start by defining some of these terms we’re going to discuss today because there’s a lot of different types of loss outside of miscarriage. And as you just talked about stillbirth and I did a bereavement doula training, and that was the first time I was exposed to all the different kinds of loss. So I just wanted to have you explain what loss can look like in the different forums so that we’re all on the same page. And I know sometimes if a mom goes through loss she may have never heard of a chemical pregnancy before or an ectopic pregnancy or a molar pregnancy. So I would love to kind of have you start by explaining what that means. So we all understand.
Lindsey Wimmer 9:13
Yeah, absolutely. When we talk about perinatal loss, we actually talk about a continuum in many ways, because it all revolves around the loss of hopes and dreams, and the the loss of that family that, you know, that is being hoped for and dreamt about. And so, we even can start with some of the infertility concepts. Certainly from a medical standpoint, how that’s approached is very different. But from a bereavement standpoint, many of those families experienced the same type of bereavement symptoms that we see with with neonatal death or any other type of child loss. And so I think it’s important to recognize that it’s, it’s not so much the physical components that will determine or dictate how somebody responds or how this is going to feel or how how long it’s going to take them to process their emotions, anything those kinds of things because it really is centered around that family that is desired. But for some of the terms that you you mentioned specifically with miscarriages, a lot of times we hear the term missed miscarriage and all that indicates is that the baby before 20 weeks has died, their heart is no longer beating. But the mother’s body has not yet started the physical process of, you know, getting rid of the placenta and in that the baby was whatever tissue and size is a present at that stage of the game. There’s also chemical pregnancies which are basically a fertilized egg that begins the implantation into the uterus. And they will actually even probably get a positive pregnancy test because the placenta is starting to develop through that process. It secretes hormones, specifically, HCG, which is used to identify a positive pregnancy test. But after that the rest of the egg and the implantation doesn’t finalize and complete and so in some cases, the placenta and the sack may continue to grow a little bit. Sometimes it doesn’t. But a fetus never or an embryo never develops from that fertilized egg. It can be kind of similar and sometimes it’s confused with a molar pregnancies because that actually also involves a fertilized egg that does not develop appropriately. Most of the time, those are specific to an egg that has been fertilized abnormally, usually meaning too many pairs of chromosomes or too few. So if the sperm fertilizes an empty egg, they would have too few sets of chromosomes. Or if two sperm fertilized one individual egg they would have too many, those types of scenarios. And in both cases, the pregnancy does not develop, the baby does not continue to develop even though there may be the appearence of cysts or fluid, sacs, those types of things that are seen on ultrasound. Another type of pregnancy loss that we can encounter is ectopic pregnancies. And these are really challenging because the fertilized egg actually does implant and start to develop. Unfortunately, it implants outside the uterus. Most commonly this is in one of the fallopian tubes. And if it does progress, the baby will eventually not be able to get the nutrients that it needs. Because those tissues are not designed to support a pregnancy like the uterus is. But it can also put mom’s physical health in jeopardy because if it gets too large it could cause those fallopian tubes to rupture, which can certainly also be devastating for the continuation of the pregnancy, but can also put at risk mom’s future fertility and maybe even her life if she has significant bleeding or something along those lines. We also work with a lot of families who are dealing with either elective terminations or selective reduction. The families that we encounter in these scenarios and with selective reduction most commonly this is looking at a pregnancy that involves multiples, usually triplets or more. And they may be encouraged to reduce the pregnancy. So by removing one or more of the babies to give the remaining babies a better chance of survival and also maybe to reduce any health complications or risks that are present for the mom. Obviously very, very challenging decisions to make that lots of conversations and and difficult decisions with elective terminations. The families that we encounter with in this regard most commonly are looking at those options because either the mom’s life is at risk by continuing the pregnancy or because the baby has been diagnosed with some type of a fatal diagnosis. And so the baby is is not expected either to survive the pregnancy or if they do survive the pregnancy will not survive long after birth. And some families will choose to continue the pregnancies but for some families, either for the baby’s sake or the family’s sake mom sake, they they will choose to terminate that pregnancy at that point, typically with selective reductions these are happening in the first trimester. More commonly, the terminations for for medical anomalies is happening in the second trimester, near that 20 week mark, when a lot of those conditions are diagnosed and seen on the ultrasound. Then we get into stillbirth and technically, by definition here in the United States, a stillbirth is the death of a baby in utero after 20 weeks of gestation. So any type of loss less than 20 weeks is typically categorized as miscarried or some variation of that. And anything greater than 20 weeks but before delivery, is identified as a stillbirth. If the baby is born with signs of life, meaning usually taking a breath or having a heartbeat, but dies shortly after, that falls into the neonatal death category. And neonatal death actually refers to any baby who was born that dies in the first 28 days of life.
Stephanie Greunke 15:23
Yeah, thank you so much for taking the time to outline what each of those things are. I know, it’s, it’s a bigger world than what a lot of people understand it to be and I love that you talk about it on a spectrum where even before you become pregnant, if you are experiencing fertility challenges, you still experienced that loss and you can identify with some of those really hard feelings. We at Whole Mamas Club will have people come to us and they’re like, Well, I’m not a mom, but you know, can I still participate and our stances you know, anytime you decide that you want to have a baby like you become a mom, you turn on this instinct in your brain and you desire to be pregnant so much that there are a lot of similar emotions that happen even from the second you decide you want to be a mom. So I love that you’re very inclusive with your definition.
Lindsey Wimmer 16:12
Yeah, you’re exactly right. And it’s all devastating. It all kind of centers around that same central heartache and I like to think of you know just how you described it that you adapt that mother’s heart and the mother’s heart doesn’t grow from the pregnancy itself. It grows, from a much deeper more spiritual, if you will kind of place and so that’s the heartache that that we want to work with, especially when we’re talking bereavement care.
Stephanie Greunke 16:41
Yeah, absolutely. Now, no matter what kind of loss you’re experiencing, you know, you you listed a couple of options there. But no matter what type of loss it’s really hard to talk about, and sometimes it’s even really hard to find information about it, especially when it comes to stillbirths. We’re talking about it more. I see people discussing it on social media and it’s just becoming, there’s more awareness around it. But are you still seeing a lot of shame and mixed experiences and moms having a hard time? Or you know, moms that are seeking a pregnancy having a hard time with this?
Lindsey Wimmer 17:17
Yeah, absolutely. You know, I unfortunately, just our society in general is not comfortable with death as a topic. And especially that’s true when you’re talking about the young and babies. That’s just not something as a society we like to even think about and so having it be an open honest conversation really goes a gear against the social norms that we have been raised with. Certainly, there are some cultures where any type of pregnancy or infant loss is seen as a an actual taboo or almost seen as a curse and lots of different components. And so, there’s different levels or different types of stigma that can surround all these different losses, and some of it is cultural, some of its societal. Some of it is just based on individual personality characteristics, too. So there’s lots of reasons why this is kind of all culminating in it being a very hard subject to talk about. You’re exactly right, that we’re starting to get more awareness. And I think it’s fantastic. Social media has been one tool that I think has really helped people open up because it is hopefully encourage some people to share their stories in a way that they feel safe doing so. But it is, I think, in turn, given other families, the courage and the strength to share their stories, and once we start realizing how many people are being affected by these these losses, it doesn’t feel as stigmatizing because you realize that we really aren’t alone. And so many times families who have had these losses will talk about once they told somebody, everybody has a story. Everybody knows somebody that has a had this type of an experience that they may not have known about it because it’s not an easy topic to bring up at dinner parties. And I think that the other piece of it is that as a society, because we don’t know how to handle this, we don’t know what to say. So people will say the wrong thing, or they won’t say anything at all, or they will just avoid the topic out of, you know, probably a place of kindness because they’re so fearful of saying the wrong thing. Or they will often think, well, I don’t want to remind them or they seem happy, so why would I talk about something sad that I don’t want to make them sad? And so I think the first thing I want to reassure anybody is you’re not reminding them that they’ve had this experience. There’s a great quote by Elizabeth Edwards, who talks about, you’re not reminding me that my child died, I I have never forgotten that fact. But when you bring it up, you let me know that you didn’t forget either. And that’s actually a very, very kind thing that people can do. But again, It’s often avoided simply because we don’t know. And if you haven’t been in that space, it’s hard to know exactly what makes sense. And so a lot of times it’s just avoided and because that’s felt to be the more compassionate, more safe route to take,
Stephanie Greunke 20:14
that’s such a touching and helpful quote. I got the chills when you were explaining that because it’s true. I mean, if you’ve experienced a loss, it’s not like you just move on and you forget about the baby, the baby is always on your mind. And especially, you know, one of the things I was taught during that bereavement training was on the baby’s birthday or certain times of the month. Sometimes there is support immediately after the loss or miscarriage or stillbirth. But then a couple months later, or years later, it is like people don’t want to bring it up because they don’t want to remind the person but it’s such a beautiful gift to remember and to say the baby’s name if the baby did have a name or to just recognize that child is still carried with the parents forever.
Lindsey Wimmer 20:59
Stephanie Greunke 21:01
So one of our audience asked a couple of questions. And one of them was related to what you’re talking about with not knowing what to say. And, you know, are there some things like even just saying the child’s name or, you know, remembering the child is really helpful. But are there specific things that can be triggering that people say? Well, they mean the best, but they say things that are triggering or things that can be helpful,
Lindsey Wimmer 21:23
For sure. Yeah, you know, in general, just anything that’s very, truly heartfelt. Sometimes it’s nothing more than “I’m sorry”. Or like you mentioned using the baby’s name can be very powerful. This is a family that will not get to hear this name very often. And so anytime it’s used can be very, can be a nice little gift to them. I think it’s also helpful to you know, say even just give them a hug, it doesn’t have to be words, but just to be present and show that you’re willing to sit with them, even though they are in a painful place and it may not be the most comfortable scenario but if you’re willing to sit there with them because you’re their friend and you don’t want them to have to be in this painful place alone, that can you know, you don’t even need words necessarily to to express those types of things. It can also just be very, very helpful just to let them know hey, I was thinking about you and baby Jane today. Letting them know that you haven’t forgotten is helpful. Giving them permission to share their story if they want. Sometimes you can say you know, I would love to hear more about baby John anytime you’d like to share, and just leave it at that. Don’t expect them to, but certainly gives them the opportunity to do so if if they would like to. I think it’s very important not to try to say things that are going to you know, try to put a positive spin on it or that might inadvertently minimize their loss. It’s really easy for us to try to, you know, look for that silver linning. of, well, at least you know, he, you didn’t get far enough in the pregnancy that you felt him kick or it would have been much worse if he was born alive and died two months later. Or, you know, it would have been worse if you had this additional complication with it. And well, all those things may be true, or you may believe them, they may not be in a place where they believe them. And at the very least, what that is actually is telling the family is, you don’t have the right to be sad, because you could only be sad if it was all these other things in addition to it. We want to give them permission to feel exactly what they’re feeling because that’s, that’s real. And so we don’t want to minimize that in any way. I think it’s also important, kind of in that same line, people who have a very deep religious or spiritual view of some of these losses. It’s it’s very easy to try to to make the family feel better by you making comments with the religious tone. Either, this is God’s plan, or you know, God’s watching over you, you have an angel now. Those kinds of things that may feel very comforting to you, but we just don’t know if that’s actually comforting to the family or not. It’s very common for people to kind of reevaluate their spirituality when going through one of these type of losses. And so they may be at a place where they’re actually not comforted at all by the fact that God has a plan because they may feel betrayed by God, or they may be struggling to understand how this fits into to their view of God’s plan. They may not have any belief, or they’ve lost their faith in any kind of a higher power at this stage of the game. So I think it’s really important to, you know, if if those comments make you feel better in processing, you know, your perspective on this experience, that’s fantastic. And there are a lot of families that will pull that in as well. But it’s important not to project those kind of platitudes and things onto them until they have a chance to process and identify if those things really do feel right and bring comfort and peace to them, as opposed to making it feel like they should be viewing their loss or they should be having different emotions than they actually do.
Stephanie Greunke 25:17
Those are such great points. And one thing that you brought up that I just want to reiterate is, you know, when you offer the suggestion that you can let the parents that are navigating the loss know that you’re there, and you’re available to have them talk about the loss. And I think that speaks to your point about our discomfort around loss. And if the parents that are going through loss feel like other people aren’t comfortable, or they’re going to make other people comfortable that might cause them to keep all these emotions inside. But you know, you as a friend or a family member saying, you know what, I’m here and I’m willing to listen and you’re not going to make me uncomfortable, has so much power to it.
Lindsey Wimmer 25:58
Exactly, right. So many times families will talk about having to put on the mask. At a certain stage, they’re expected to put on this mask and project, the idea that they’re better, everything is good, they’re in a happy place. And number one, that’s not realistic. But number two, it’s a lot of work to pretend when when your heart is hurting so bad and so if by giving somebody permission to take that mask off, really can be helpful to them, even just in their own processing, let alone can really strengthen your friendship and let them know that you want to support them in the best way possible.
Stephanie Greunke 26:34
Now, I would love to pick your brain about stillbirth loss and communicating that message because on social media, we talked about, you know, miscarriages and saying that you’ve experienced that kind of loss is becoming a little bit more common and normal. But when it comes to having a stillborn and communicating that loss that can be really challenging because you have gotten far into your Pregnancy where you look pregnant. Or you may go to the hospital and realize that you lost your baby around or closer to your due date. And so your friends are expecting you to come home from the hospital and have this baby and you don’t. So that’s, I mean, that challenge is so extremely difficult. What kind of advice or what have you seen helpful for communicating that message with stillborns?
Lindsey Wimmer 27:26
Yeah, you know, I think there’s lots of different ways to do it. And at the end of the day, I always encourage families to do what feels right because, again, it may depend on how they have been sharing this pregnancy with their friends and family or just on their own personal tendencies or the family dynamics that they’re experiencing at the time, and everybody’s gonna respond to it differently. I’ve seen some families just kind of go into a cocoon and almost keep it a no kind of a silence around it and they may not tell some of their friends and family for quite a while. Some of them will choose to send out a mass text or email stream to the people that they feel like they really want to be informed. But they will do it in that way so that they only have to tell the story once and they can craft the words and you know, kind of pull it together and in that way and then distribute it. I have seen some people put a comment on social media, and if that’s what feels comfortable, or they feel like that’s the easiest way for them to share it with the people that they want to know. Some families really liked to tell the story over and over again. So they may choose to pick up the phone and and call the people that they are going to be relying on for support or that have been supporting them through the pregnancy. Because it may feel good and be there very therapeutic for them to tell that story and have that personal communication with people. I’ve seen families still send out birth announcements. Obviously the wording may be a little bit different, but still celebrate and acknowledge the fact that we had a baby and this baby is a part of our family, and in using that as a way to kind of help friends and family understand how they are going to be proceeding this loss and how they’re going to try to incorporate this experience into the rest of their lives as they move forward. So, there’s lots of creative ways, but I always just encourage parents to do what feels right to them. They can share whatever level of detail, they feel like they want to share. And it’s also helpful, I think, for them to be very honest, sometimes in that initial communication about what it is that they want or don’t want from their friends and family. Some people will just flat out say, we need a lot of alone time. So, you know, please, you know, don’t contact us or you know, we’re, we would prefer not to get flowers. We would prefer not to get texts and emails. We will reach out to you when we’re ready to have those kinds of interactions. Or some people may say, you know, we want to celebrate this baby, nd so we hope you’ll join us at this moment. morial service or we hope that you will, you know, do those kinds of things that whatever they may be doing to try to help honor their baby. Or even just focus on the practical things, you know, we’re going to need a lot of help, especially taking care of our living children or, you know, if you need help from that regard. Most of the time the people around them are wanting to help, they just don’t know how to help. And so, you know, for the breaved family, lot of times they don’t know what they need. And that’s that’s usually the hardest part. But if they start to think about those practical things as well, let’s just talk through; do you want people to come over with meals? Or would you prefer that everybody just stay away? Do you want somebody to pick up your kids and take them to the park for the afternoon so that you can take a nap or do you need your kids right there with you? So just kind of helping them you know, process and think about some of just the practicalities of getting through those first weeks and months, and then translating that into how your friends and family actually can help you just you know, kind of benefits everybody it provides clear guidelines so that they’re not doing something that you don’t need, or that could be hurtful to you, but you’re also allowing them the opportunit to help you in the way that you need it the most.
Stephanie Greunke 31:14
I 100% agree that everybody grieves differently and there’s no right or wrong about how you grieve or how long it takes for you to come out of that isolation and really talk about what happened. I am so glad you brought that up. One of my friends who did have a stillbirth or stillborn she had her husband write this post for social media on Instagram, and I was talking to her and she’s like, it took us hours to figure out how we wanted to communicate that message and what we wanted from people. Did we want their condolences, or did we want them to just leave us alone? And so I think yeah, that worked for them and their specific situation is just having that one blast and allowing other people to communicate that message for them instead of having to relive it and repeat it all the time. So I think there’s just so many ways to go about doing it. I also think that when it comes to having any kind of loss, the whole process of figuring out what happened and kind of finding some closure can be really difficult because we don’t have answers. A lot of times we don’t know what happened that contributed to that loss. And that can be really hard because, you know, parents are wondering, you know, Did I do something wrong? Or should I have gotten to the hospital earlier? They start blaming themselves. So how do you help parents work through this and figuring out the closure and to really not blaming them for what happened?
Lindsey Wimmer 32:49
You’re exactly right. That self blame is probably one of the most universal components of bereavement that we see especially with the moms. At some point, I think every mom that I’ve ever worked with has thought or said that this was something related to something that they did or didn’t do. And 99.999% of the time, that’s absolutely not true. But there’s just this natural urge to, to blame ourselves and and to really kind of take that on. And there may even be a fear that other people are blaming the mom as well. And so that’s a really heavy burden. I encourage everybody in the healthcare system and in the support system around the family, to just reiterate over and over again that you did not do anything wrong. You did everything you knew how to do and everything you could think of, to be the best parent possible for this baby. And we all know how much you love this baby. We’re not blaming you. You just need to kind of keep repeating these things because they won’t believe you. They do have to kind of get to that spot themselves but the more that they hear it, the the easier it is for them to eventually start to except that. That can be a particularly difficult place to get even just like you said, if we don’t have answers, which so many times we do not. And one of the first things I actually do is I try to tell parents not to look for closure, because I really don’t think closure exists in this realm. It kind of is along the same lines of people will ask sometimes even straight out well, what are you going to get over this? When are you going to be over this? And my answer is they won’t be. There will never be a place where they feel like this is all tied up nice neat with a bow and it makes perfect sense, and this is all just something that they’re comfortable with. Most families eventually get to a place where they have come to terms with some of the things maybe even been able to accept that this was not their fault or that there are just answers that whether it’s the science or the spiritual aspect or any any part of it, can’t explain just yet and find a place of peac with that type of information. But it’s a process and it’s certainly not something that comes easy. It doesn’t come quickly. Some people, it’s faster than others. But for some, it takes a very long time. I encountered one family that was very open about the fact that they they never really got to a place of peace with their loss. They experienced the stillbirth of their first child. And they said after their youngest child was in school, and they were, you know, in doing all these activities and things that it finally hit them that it’s very possible that child would not be here if they hadn’t lost their first child because they wanted a family of two kids and they ended up having three but when they suddenly looked at their third now youngest child, and realize that they would have missed out on some things that that experience had happened. And not that it justifies it or makes it better or any of those things. But that was the kind of the light bulb moment for them that said, you know, we’ve we’ve made good things and maybe there are good things that have resulted from this even though it was a painful place to get to. They were able to find that sense of peace by looking at the child that they they likely would not have had otherwise. And so, again, it’s going to be different for every single family. But I do encourage them not to be searching for that time when it’s not going to hurt at all or when it’s it’s all going to make perfect sense because that may be an impossible ask.
Stephanie Greunke 36:44
Yeah, I really appreciate that answer because I feel like even if you have an idea in your head that “Oh, well it’s been a year I’ll start feeling better. And then if you get to that year point and you’re still really grieving, which is very probable, you know, you almost want to beat yourself up or feel angry that you’re not over it. And you have this unrealistic expectation of yourself when we just don’t know how things are going to go and how you’re going to feel or when you’re going to start feeling better. So I really appreciate that. It’s not about finding closure. It’s just, you know, being patient with yourself and understanding that this takes time. It’s not a, there’s no set time. It’s not like after three months, you’re going to start feeling better. And that can be difficult because you almost want to know when you’re going to start feeling better. You want to have that tangible thing, but it’s just, it’s unrealistic to expect that.
Lindsey Wimmer 37:38
Yeah, it’s very true. If we could give a timeline or a specific path, this is the steps that you have to take to get better. And this is how long it’s going to take you to do each of these steps. It would not be near as daunting for people because it’s so much easier for us to brace ourselves and endure even painful things if we know that it’s short lived or we know that we can see where that end in time is. And unfortunately grief doesn’t work that way.
Stephanie Greunke 38:07
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You know, similar to this timeline, there’s also that timeline of if the parents want to have a another baby. They get told a lot of different things. Oh, you need to wait three months or you can start after the first period resumes or, you know, you need to wait longer than three months. So what is your stance of the Star Legacy Foundation? How do you help answer that question for families? I’m sure it differs based on the type of loss and the complications that can occur.
Lindsey Wimmer 39:42
Yeah, that’s exactly it. Our our stance basically is that from a research perspective, we don’t have any solid studies that give us answers from a physical standpoint about what type of timeline is best from a medical standpoint. So we don’t have any solid evidence to rely on. And so again, it comes back to a very unique set of circumstances. From a physical perspective, a lot of is going to depend on, like you said, what kind of loss it is, but if you know what caused the death if we know or if we don’t know. A lot of times as part of the the last experience, there may have been additional complications, particularly for the moms in a physical manner that really needs to be addressed before, you know it would be advised for them to pursue additional pregnancies. Sometimes if there’s a cause that’s identified that may need a treatment if that’s when it’s, you know, identified that it may be genetic issues that the couple wants to pursue some genetic counseling before making any decisions. Or, if the mom has an autoimmune disorder that either wasn’t detected before or was not controlled well, that I think may have contributed to the loss. Maybe that’s something that needs to be addressed and treated and brought to a better state of control before, you know, they would recommend it. So there’s lots of circumstances that could be the case, even as a complication of the birth itself, if there was a lot of birth trauma, or maybe mom had a hemorrhage after the loss or something. Those things do take some time to recover from physically as well. And then you have the the entire emotional side. And I think that’s where you get all kinds of comments all over the place. And we’ll never have a study that really addresses that because it is so dependent on the family. I hear lots of families say this just, you know, made me want to have a baby to love and to care for at home, even more. And so waiting even three days, makes it feel like this is just torture because I want to have that experience. There’s some people that don’t ever really feel like they can make themselves vulnerable to this type of pain again, because their fear really does kind of consume the emotional courage and strength that it might take to pursue more pregnancies. Some people feel like they want to get to certain emotional milestones that they can give them some more time to process and get to a better place just in their in their own mental state before they get to that stage. So it really does just depend on the the family and what feels right to them. And then, and I know you didn’t use these these words, but I would just encourage any of your listeners to to try to avoid the phrasing of when are you going to try again. Number one, we don’t like to ask families that because it does put a lot of pressure and it almost kind of implies that this baby is replaceable. And so if you’re just going to hurry up and have another baby, because that will make you feel better, it’s not going to make all the pain miraculously go away. It will never replace the role that this previous baby has in your family story. But I also don’t like the words try again, because it implies that family has failed. And they absolutely did not fail. They had a baby. And so what they may want to you know, try to conceive additional children, and they may you know, kind of pursue some of those types of phrasing things that I understand that people begin to it’s not intentional to be hurtful, but those are the kinds of things that the families really do pick up on and tell us that can be very hurtful.
Stephanie Greunke 43:46
Oh, yeah, you’re very vulnerable in that situation. And I can see just even little tweaks in wording can make all the difference. And I think you know that question, “When are you going to have another baby?”. It’s almost like a filler like, they don’t know what to say, or they’re trying to make the person feel better and let them know that it’s a possibility that they’ll have another, a second or whatever child. But again, I can see that that would be really hurtful. So I’m glad that you brought that up so we can be aware and just be really sensitive with these families. Now, one of the other questions that I hear a lot is wondering what they can do to prevent this from happening in future pregnancies if they did experience a loss. And you mentioned a couple of things like doing some genetic testing or looking for autoimmune concerns or thyroid concerns. But what advice do you have for families that are really nervous about if they’re going to have another child?
Lindsey Wimmer 44:45
Yeah. So they, you know, the the hard reality is that women who have had a poor outcome in a pregnancy, they are at increased risk of having another poor outcome. It’s such a human nature and tendency for friends and family and even health professionals to give them some false reassurance that, this won’t happen again, this time is going to be different, I know it’s going to be better. And unfortunately we we can’t say that, we can’t know that, and those families really do recognize that because of that sense of vulnerability that you mentioned. And so I think it’s really, first and foremost appropriate to be honest and acknowledge that this is a really challenging kind of mind space to be in through a pregnancy the anxiety is an overwhelming component for so many people. That those false reassurances don’t don’t really make things better because we do know that even if the odds are low, sometimes bad things do still happen. I think because of this risk, I definitely encourage families, but then also the health professionals, to utilize a higher risk protocol for any of those families. For the most part it involves just additional monitoring, especially in the late second or the third trimesters when we do have more options regarding treatment or intervention, those kinds of things. Some times this includes including a maternal fetal medicine specialist into the care team as well. Sometimes additional people will need to be pulled in or additional testing or treatments will be pulled in. And all that depends on the cause of death. So if the previous baby died because of severe preeclampsia for the mom, we we may want to be a little bit more proactive in and doing what we can to prevent and reduce her blood pressures and keep the pre-eclampsia at bay and those those kinds of thing, as an example. We’re really getting some fantastic research lately, the last five years or so, from the rainbow clinic, that the University of Manchester in Manchester, England, and for anyone who’s not familiar with the term rainbow Baby, it’s used a lot of times for these scenarios to describe a pregnancy that comes after a loss. And, so this this rainbow clinic studies and includes women who have had previous losses and they’re having really phenomenal positive outcomes and results. They have a protocol that they use that is not overly invasive, not overly extreme, but it really does just address the fact that these pregnancies need to be monitored much more closely from a physical standpoint, and that the families need a lot more support from an emotional standpoint as well. And so I’m hopeful that the data that they are starting to report will help give health professionals even here in the United States, more tools to have a really solid protocol to follow to help us reduce the recurrence of any poor outcomes. But outside of that, I tell these moms to do the same things that we would tell moms In any pregnancy. Make sure that you’re monitoring the baby’s movement and reporting any change in that movement. If it’s not typical for your baby’s behavior or personality. If you’ve noticed it, absolutely make that phone call or go straight in to be checked immediately. Don’t wait till the next day. Don’t wait to mention it at your next appointment. If it’s something that catches your eye and it has you concerned we really do want you to be checked out because sometimes those are the subtle symptoms, the baby is giving us that they’re not feeling well or that something is wrong in their environment. Certainly, we want moms to be as healthy as possible themselves. And that may mean addressing some of these health conditions. May also mean working with smoking cessation programs or reducing their alcohol intake. Being physically active at a level that’s appropriate. Having a healthy diet, those those types of things. We want moms in their third trimester to sleep on their sides. We’re getting more and more data that sleeping on your back in the third trimester can increase the risk, particularly if there’s already other concerns with the pregnancy, such as gestational diabetes or preeclampsia. The baby’s not growing well, like with a growth restriction or umbilical cord or placental concerns. So those kinds of things may all kind of contribute. And so one of the things we encourage moms to do is sleep on their side to help promote good blood flows back through the placenta and to the baby. And above all else we encourage these moms to trust their instincts. That maternal intuition starts very, very early. And it’s something that’s very easy for women to brush off or to try to ignore, that they’re paranoid. It may even be very hard to describe or articulate exactly what that feeling is. But anytime a mom feels like something is off or that they feel like as a mom, they have that connection with their baby. And so we want them to trust those instincts and and have those really honest conversations with their health professionals about what they’re feeling, and make sure that intuition is, you know, valued as part of the the total package of information that we can gather about those pregnancies.
Stephanie Greunke 50:12
I’m really glad you mentioned that last piece because I feel like I hear this a lot from moms that are concerned about something with their pregnancies. They don’t want to bother their health care provider or they don’t want to call them all the time, but they have true concerns. And what I like to tell them is like, that’s why your provider is there. They’re there to hear your concerns, and they want you to feel comfortable and empowered during your pregnancy. So definitely reach out and if it gets the point where you start feeling pushback or tension from your provider, it may be worth, sometimes finding a doula that can help you feel more comfortable talking to your provider or talk about some of the concerns or, you know, even finding another provider if that’s the case. So I’m really glad you mentioned that and doulas are fantastic for a lot of different things including pregnancy loss. I was really interested to learn that there are bereavement doulas that are out there and even abortion doulas that are out there that can help with that emotional piece of loss.
Lindsey Wimmer 51:10
Yeah, the healthcare system can be very intimidating, especially if you’re not familiar with it. And pregnancy can be a vulnerable time. And so it really is even just that much more important for women to feel empowered to speak up and whatever it takes for them to feel like they have the strength to do that. I would encourage them to pursue that because that’s, that’s a critical aspect of pregnancy care.
Stephanie Greunke 51:37
There are some really beautiful things that parents can do to remember their baby and I’ve heard a couple of things. You know, one thing that I heard from parents was that they have this plant that they planted in remembrance of their baby. They maybe have like a necklace or a piece of jewelry to help remember their baby and just acknowledge their presence. And then you know, I’ve even heard and when it comes to having a stillborn, leaving the hospital it can be very emotional especially if you’re leaving the hospital with you know empty arms and you don’t have a baby to take home with you. So one of the doulas that I talked to she has these bears that she will give parents to leave the hospital with so they’re holding something with weight to really remember their baby and to help with that transition. So do you have any other things that you have heard from parents that they really have enjoyed to help with that loss?
Lindsey Wimmer 52:36
Yeah, you know, I could I could probably talk your ear off because I one of the one of the things that I love about my work right now is that I get the privilege of hearing so many of these babies stories from from parents and I am always just amazed at how creative so many people are. The more creative or the more personal it is to families, I think it’s it’s just that much more people powerful, so it’s really fun. I’ve seen, you know, from a very practical early standpoint, things that they’ll do with memorial services, or celebrate birthdays by singing happy birthday and making cupcakes. Sometimes they will establish traditions with their living children or even subsequent children or the the greater family, that they will do certain things on the baby’s due date or maybe the baby’s birthday, whatever feels right to them. People will do random acts of kindness in memory of their baby. Some of them bring in some of the traditions that they do with their other children by hanging a Christmas stocking up for this baby along with all the other children or, you know, those those types of things. The wave of light is kind of a fun phenomenon for a lot of families because on October 15, that’s considered pregnancy and loss or infant loss Awareness Day, and so at 7pm on October 15, around the world, lost families are encouraged to light a candle and memory of their baby and it creates this wave of light that goes around the world the entire night. So that sometimes can be just another way to remember their baby but it can connect them to other last families, even if just virtually. Some families will continue that tradition in light a candle in memory of their baby for special dinners or maybe even every single night as a way to have their baby part of their family thing. So I’m like to tell their stories. Some people will do different crafts things. You mentioned, jewelry is a big piece. Whatever is unique to the family just makes it that much more personal because it really does make it feel like, it’s a way for that baby’s story to be told and a way for that baby’s place in that family to be represented.
Stephanie Greunke 54:52
Thank you for sharing all those unique ways to really celebrate and acknowledge baby and baby’s presence. And I think just like with grieving, there’s different ways that you want to celebrate and acknowledge baby. So I’m glad that we have this array of different opportunities for parents to do that. And so it just want to wrap up today. Thank you so much for your time. This is really great information. It’s really helpful from the perspective of a person who has gone through or is currently going through loss and from a health practitioner standpoint, and from just a friend and a family member who wants to support someone going through loss. It’s way more common than, you know, it really is highlighted. So I think this interview is going to help a lot of people. So just really want to take time to appreciate you for being here. And you know, you mentioned the beginning that you work for the Star Legacy Foundation, and I know there’s a lot of opportunities for education and support within your foundation. So would you be able to explain what we can find if we go on your website?
Lindsey Wimmer 55:54
Yeah, absolutely. From a support aspect, we do have a support line, that anyone connected to a loss or impacted by a loss is welcome to to call to, you know, kind of help process or maybe identify what other resources might be available for them. We offer a series of online virtual support groups for grieving parents, one for grandparents, one for dads. We also have one for pregnancy after loss, and another one for parenting after a loss. So lots of different ways that people can maybe connect with people that are in the similar stage that they are in. We offer childbirth classes specific to couples that are in a pregnancy after a loss because maybe they didn’t get to attend to childbirth class before their previous experience or maybe they they want a refresher but want it tailored to knowing the unfortunate reality is that they now know too well. So we do offer that as well. We have a series of free education materials that families can order themselves or health professionals are welcome to order and have a supply on hand for any families that they encounter, that just kind of give some some practical advice and information around the grief process. But then also healthy pregnancies, kind of prenatal care things that they can do. We offer a series of education workshops for health care professionals. So there’s lots of information about that. We have peer support programs, because sometimes families really gain a lot just by talking to somebody else that’s been there, and hey can have those honest conversations about, you know, maybe some of the ways that they approach upcoming holidays, or how do you handle when people say, things that are hurtful and different kinds of things. So peer support can be helpful. We have 25 chapters from coast to coast, and we’re adding more it seems like all the time. And so if there’s a local chapter, your area, we would definitely encourage you to connect with them. They certainly can do some a lot of that peer support, but they tend to do a lot of local awareness events, family and community events to help raise awareness, but also provide support in that community as well. We we just had the stillbirth summit. It’s a large medical conference that we host every other year. That brings together researchers, health professionals and families from around the world. This last time we had people from seven different countries and 30 different states. So it really is just an opportunity for people who are engaged and invested in the prevention opportunities, to gather and learn from each other. We also have a podcast called Stillbirth Matters. And with that podcast, our host Chris Duffy will interview different experts or people with unique perspectives around loss as a way to help families get information directly from some of these researchers or experts that are working in this areas. And finally, I would love anybody that’s listening to to consider and look into the pregnancy research project. This is a brand new research study that the Star Legacy Foundation has just launched in cooperation with the University of Michigan. Basically we are asking women who have had a baby within the last five years, those who are currently pregnant, or those that have had a stillbirth to share their experience with us. There’s two parts to the study. One is to answer a survey of questions that tries to get at the information that moms know about their pregnancies that isn’t usually reflected in the medical record. Especially things around fetal movement or outside stressors and some of those kinds of content. And then the second piece is to allow us to request the medical record so that we do have that medical piece as well. And we have a very large medical team that is going to be looking at all these data, to try to answer a lot of questions about are there additional opportunities to prevent these losses and then where is there opportunity to provide better bereavement care after losses as well? So that’s certainly an exciting new project that we have going on that we hope the faster we get a large number of women to contribute their stories, the sooner the researchers will be able to hopefully make some progress for all of us.
Stephanie Greunke 1:00:14
Wow, you are up to amazing things over at the Sarah Legacy Foundation. I think it’s fantastic that you have so many different kinds of resources, resources that are available from visual, auditory to social support and connection, educating health professionals. I mean, it’s just, it’s fantastic, what you’re doing. I’m just so grateful for the work that you’re doing. And you also have something on your website too where parents can create a star. And that’s something that they can do to help remember their little one.
Lindsey Wimmer 1:00:44
Absolutely we, we want to make sure that both internally and externally those babies are, why we do what we do and they have to be at the forefront. And so that’s just our our own small way of offering families another opportunity to memorialize their baby put their baby’s namein print where it can be seen by thousands of the visit our website and then also just kind of share in that community to hopefully so they won’t feel quite so alone.
Stephanie Greunke 1:01:13
Well thank you so much for your time. I’ll put all of this information in our show notes so people can click through if they’re driving or listening to this while they’re busy and don’t have time to jot it down. But really appreciate what you’re up to. And thank you for spending time with us today.
Lindsey Wimmer 1:01:27
Oh, it’s my pleasure. Thanks for inviting me.
Stephanie Greunke 1:01:31
I know that was a hard episode to listen to. But I think it’s really important information and thank you for sticking with us and listening all the way through. Remember, if you are interested in trying Rasa you can use code “WHOLEMAMAS” at checkout over at wearerasa.com to get 20% off your first order. And if you learned a lot from this episode, please help us out by sharing this podcast with your mama friends. You can take a screenshot and share it on social media or leave us a review on iTunes. And please remember that the views and ideas on this podcast are for informational purposes only. All information content and material presented on this podcast is for informational purposes and not intended to serve as a substitute for the consultation, diagnosis and or medical treatment of a qualified physician or health care provider. Consult with your qualified physician or health care provider before starting any diet supplement regimen or to determine the appropriateness of the information share on this podcast, or if you have any questions regarding pregnancy or your prenatal treatment plan. Now go on, have a great day and nourish and nurture yourself and your family.
- Recognizing different types of loss
- Ways to communicate about your loss
- Ideas for honoring and remembering your baby
- How to find support when navigating loss and pregnancy after loss
- How to support a friend navigating loss
- Find Star Legacy Foundation on Instagram
- Learn more about Whole Mamas Pregnancy Program
- Subscribe to our Weekly Pregnancy Emails
- Take the free mini-course at Dr. Elana’s Med School For Moms
- Schedule an appointment with Dr. Elana
- Follow Steph and Elana on Instagram
- Whole Mamas Podcast Archive
This episode's guest
Lindsey Wimmer is the Executive Director of Star Legacy Foundation. She holds a Bachelor of Science degree in Nursing from St Catherine University and a Master of Science degree in Nursing from the University of Colorado Health Sciences Center. She is a pediatric nurse practitioner and has taught pediatrics, public health, obstetrics, and nursing leadership for nursing students. Her clinical experience includes primary care and emergency care settings. Ms. Wimmer is certified in Perinatal Loss Care and lectures throughout the United States on opportunities to improve stillbirth prevention and care.
The Star Legacy Foundation is a non-profit organization dedicated to reducing pregnancy loss and neonatal death and improving care for families who experience such tragedies. It’s a community of families, health professionals, researchers, policy makers, and individuals dedicated to helping every pregnancy have a happy ending.