“Supporting Women with Pregnancy Loss, Part One: My Story” – with Shira Billet

Shira Billet shares her story of losing a twin pregnancy in 2015. Since this loss, Shira has become a resource for women and families going through the same thing. She explains how she found that “if I could do something that would make the world better, or help other people… that felt like some kind of alternative version of being a mother.”

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Dr. Fox: Welcome to High Risk Birth Stories, brought to you by the creators of the Healthful Woman podcast. I’m your host, Dr. Nathan Fox. High Risk Birth Stories is a podcast designed to give you, the listener, a window into life changing experiences of pregnancy, fertility, and childbirth. So, Shira Billet, who is a doctor, you’re a PhD in the philosophy of religion, correct?
Shira: Something like that. Yeah.
Dr. Fox: Shira experienced a loss of pregnancy in 2014, so, almost six years ago. And over the past five to six years, Shira and her husband, Rabbi Steven Exler, have become a resource for women and for families working through pregnancy loss. And you’re an advocate, you’re a counselor, you’re someone who listens, you’ve been open, you speak publicly about it, which is really special, because many people are just unable to do that. And I’m so happy that you agreed to come on our podcast today to talk about it, to talk about pregnancy loss.
Shira: I think it’s such an important topic. Thanks for giving me an opportunity.
Dr. Fox: We spent a lot of time together over the years and we speak a lot. And I’ve always found that your perspective, both for yourself and for others is so thoughtful and so important. And there are so many people who are either themselves going through a pregnancy loss, or have recently been through a pregnancy loss, or it’s something that happened a long time ago, but still hurts them very much obviously, or for people who have not gone through that, they have a friend or a family member who went through that, and don’t really know how to interact with them, and how to help them, and how to comfort them. And I think that your experience and your perspective on this, is really helpful for all of those families. And it’s really important that you’re doing what you’re doing.
Shira: Every time I’ve spoken about this publicly, I always try to say to the audience that I think a lot of people in the room, especially people who are finished having kids and haven’t experienced a loss in a pregnancy might feel like this topic is irrelevant to them. This might sound morbid, but I just think it’s realistic that this stuff is never going to stop happening in the world. And so even if it hasn’t happened to us, it will inevitably happen to someone we love at some point in our lives. And so I really do think it’s important for everyone to educate themselves about this, learn about this because even if, thank God, it doesn’t feel relevant to you, it’s something that will be useful in the future to know something about.
Dr. Fox: Right. And in terms of how common it is, I mean, early pregnancy losses, what we, you know, colloquially call miscarriages are very, very common and most, you know, women who have tried to have families and have gone through a pregnancy loss, an early one, you know, there are those who are very blessed who haven’t been but it is very common. But as you get later in pregnancy and more advanced in pregnancy, those become less common, but they’re not so uncommon. As you said, everyone either knows someone who’s gone through this or knows someone who knows someone who’s gone through this. It’s not as far away as you might think. And a lot of people don’t talk about it, either their own experiences or others, have you found that other women are willing to discuss it with others or publicly as you are?
Shira: One of the things that I’ve learned in both from my own story, which I think we will talk about a little bit later, and from speaking now to so many women and couples who’ve had pregnancy losses, and particularly at later stages, is often when they find me, is that every story is so different, and every person is so different, and every person’s reaction is so different. There are also some really, I think, common universal themes that I’ll touch on, like at some point in our conversation as well. And because of that, I would say that there are some people who are comfortable being open and more public, and I think there are other people who aren’t. But I think that one thing that helps is when we de-stigmatize the topic by talking about it.
I’ll just mention briefly that someone in my life who had an early miscarriage a few years ago, thought that she didn’t know anyone who had an early miscarriage. And then she like kind of bravely told maybe three of her close friends, and it turned out that all of them had had one and they just had never told her. And she felt so comforted knowing that other people had gone through this and it wasn’t just her. And I think one of the things that really helps is when we do talk about it, all those people will come out of the woodwork.
And I think especially one thing I found when I’ve spoken publicly is that older women who had losses at a time when this really wasn’t talked about and when people were really just told to kind of move on and forget, they’ll sometimes still come still processing their traumas from some many years ago, 30, 40, 50, 60 years ago, and just say like, “Thank you for talking about this because I’m still kind of dealing with what I went through.” And a lot of why I think it’s unprocessed sometimes for older women is because even less than today, this was really a silenced topic. So it’s so important to be open and to talk about it.
Dr. Fox: Absolutely. And there’s, you know, so many important things you just said there. And just to highlight a couple of them, when you’re talking about early miscarriages, it’s an interesting phenomenon that most people don’t tell anyone they’re pregnant until they get past a certain point. And whatever that point is, is different, you know, for a lot of people, after the first trimester, after 10 weeks, after normal ultrasound, whatever it is. And I think the reason is, because if there’s, you know, there may be a miscarriage, and they don’t want to have to tell people that they were pregnant, and then tell people they’re no longer pregnant. And that goes back a long time.
And it’s part of the reason why, as you said, so many women, so many families, they don’t realize how common it is, because everyone keeps it a secret, the early pregnancy losses, but it is very common. And the other thing is your mentioning how it is a real trauma to have a pregnancy loss, particularly when they’re later in pregnancy, obviously, very traumatic early in pregnancy, too. And it’s not something that you just forget or get over. It doesn’t work like that. I mean, trauma, as you said, is going to stick around for 30, 40, the rest of your life, maybe whether you talk about it or don’t talk about it, but it’s it seems to be made, you know, easier, if you are talking about it.
Shira: Yeah, absolutely. I do think that trauma is a key piece of this. You know, I think, obviously, depending on the person, it can be traumatic at any stage. But I certainly think that at the later stages, it really is. And I think, though, that people who are able to kind of process their trauma in healthy ways will find that even though you never forget, and that’s one of the things I do want to talk about today more is how you really never forget. But I think though that there’s different kind of internal memory. I think there are kinds that are continually re-traumatizing us or unprocessed pain.
And then I think there are memories that we can really live with, in healthy ways. And I think the goal really would be that, given that it’s impossible to forget the experience and the baby or babies that have been lost, I think the goal would be to find healthy ways to live with those memories. And I think when it’s not processed in healthy ways, then it becomes those kind of painful, continually re-traumatizing memories. And when it is processed in healthy ways, I think we find ways to incorporate these babies that have died into our life story, but not necessarily in ways that hurt, you know, with the passage of time, once we’ve kind of healed from the initial phases of intense grief and pain.
Dr. Fox: Right. And it’s, I mean, no different from any other loss or a death. I mean, this is true for people whose unfortunately, they lose children or they lose family members who are young or, you know, friends who are young, and sort of something more “unexpected.” You know, when you lose someone, it’s always painful, obviously, but the more sort of different it is from what they expected, it’s sometimes more traumatic. And, you know, when people lose, you know, babies before they’re born, it has the same effect on them, and all the things that you would sort of expect for someone who has a loss of, you know, of a child who is born, parents go through the same process and the same grief.
Shira: Yeah, I think it’s really true. And it’s one of the things that I’ve really come to understand, I think, about grief is that there’s something quite universal about grief and especially like what you’re saying about grief after traumatic losses now, because I think people who haven’t experienced a pregnancy loss, a late pregnancy loss, really don’t understand that.
I personally don’t…you know, if I’m talking to someone who’s lost a born person, whether it’s a child who has been born or a sibling, or any of the other examples that you gave, you know, I won’t say to them, “I understand a little bit about what you’re going through because of this thing that I went through when I lost twins at 23 weeks of pregnancy,” because I do think that can be really jarring for someone and even offensive, the suggestion that there’s some equivalency between these losses.
And I don’t think there is an equivalency but what I have come to believe is really true, is that there’s something universal about grief that I do think cross over in a bunch of different kinds of losses. And there’s a lot of similarity to the experience even though I think intuitively, we wouldn’t expect that on some kind of scale of how real we think people are. And I think it’s pretty common in our society to think that unborn babies are less real in some way than other sorts of humans.
And so again, it’s not something that I would say to someone who had a different kind of loss, but it is something that I actually think is true, that there’s a really strong shared element to the grief that’s just worth people going through the loss knowing because they might think, “Why am I grieving so much, this wasn’t a fully real person, or this wasn’t a child that I actually knew?” And so they might even think that there’s something wrong with them for how much pain they feel. And I think it’s actually important to realize, like what you said, that it’s a really shockingly intense pain that feels like you lost a child, even if you also think it’s different from losing a child.
Dr. Fox: Right. And, you know, my perspective is not as someone who had that kind of loss, and so I can’t understand it from the same perspective you would or someone else would, who has undergone a loss. My perspective is just as the physician and maternal fetal medicine specialist, so people come to me after losses for their subsequent pregnancy.
So I spend a lot of time talking, you know, to women and to couples, and to families about loss and about what sort of to expect and what we’re going to do and sort of what…and that’s really just my experience in, you know, meeting with and knowing and talking to a lot of families who undergo this. Obviously, it’s not the same for me, but, you know, why don’t you tell us your story? Tell us what happened to you and to Steven, and what was your experience of the loss, and how it affected you at the time, and then obviously, to this day?
Shira: So, you know, one thing I’ve been thinking about, in anticipating this conversation is, is actually how little I tell my story, even though I talk to people rather often, you know, sadly, often. And so I kind of want to caveat this by saying that I already mentioned earlier that every story is so different, and every person is so different. And I think a real reason why I almost never talk about the details of my story is because when I talk to people, I don’t want to impose my experience on them. My story is what happened to me. And the ways in which I reacted are the things that are what were right for me. And I would never want anyone to view this as normative or universal.
And so often, I listen rather than tell, because I think it’s much more helpful to meet people where they’re at. But because right now, it’s just you and me talking, and although you know, folks who are going to be listening to this will have their own story, some of them, I feel more comfortable saying my story, but I want to preface it by just saying that this is just my story and, you know, nothing that I did should be viewed as what everyone ought to do, and at the same time, maybe it’s helpful to hear it nonetheless. I guess with that preface, I’ll just say that, five years ago, literally this week, I had a positive pregnancy test for my second pregnancy. And one thing I’ll say is that I have three children who are alive and in my home that I’m raising, and I have no clue when I had a positive pregnancy test with any of them. I only remember the date of the pregnancy test from this pregnancy that I lost.
And I think it’s because with trauma, and the subsequent trauma that wound up happening in that pregnancy, it kind of froze those memories and the vividness of the time, such that the kind of five and a half months of that pregnancy, I actually remember in greater and more vivid details than some things I did like last week. But it does still feel kind of significant for me to be having this conversation exactly around the time when I first found out about that pregnancy five years ago, in May 2015. It was my second pregnancy and my oldest was about 18 months old. And my first child was 18 months old. And I was both excited, but also scared about having another child. Life was busy, life was full.
And then the really shocking thing was, at about seven weeks pregnant, I found out unexpectedly that I was expecting twins. This is what actually ultimately led me to your practice. I was seeing a midwife at the time. And then I kind of realized that that practice was pretty much in over their heads, once we realized that the twins were identical and shared a placenta. And so someone had recommended your name actually, and I switched over to your practice. It was a really happy time in my life, I guess I would say, from the initial intense fear of being pregnant with twins when I was nervous about even having one more child at the time, came this excitement and the feeling of being really lucky. They were identical twin girls and there was this feeling of just how special that was.
And my husband and I felt very blessed and I remember that summer we had a farm share and we used to get eggs and for whatever reason just that summer, the eggs always had two yolks in them. And it felt like a sign that like twins, this was meant to be. It was all this kind of crazy stuff coming together. And it’s really funny because I still get that farm share and I’ve never had twin eggs since that summer. And in any case, it was a happy time. And other happy things happened that summer. My younger sister got married and my parents married off all of their children and I was 18 weeks pregnant with my baby girls, and my sister was getting married, and it was sisters and all these things kind of felt like they were coming together and life felt really good.
And then at about 22 or 21 weeks, that all changed when we found out pretty unexpectedly that the twins had gone through the most common complication of identical twin pregnancies, called Twin-to-Twin Transfusion Syndrome. And we found out that one of the twins had died in utero. And this was a really intense shock, and it was really painful. One of the twins was still alive at the time. And it was kind of this feeling of like the twins were gone. There was a baby now. And in fact, even in medical terms, I remember sitting in the office of your practice and watching them go through all of the appointments that I had scheduled and switching them from twin appointments to singleton appointments, which was like so shockingly painful, because suddenly I was pregnant with a singleton, even though I had two babies inside of me, it’s just that one of them was dead.
And there were so many feelings, and I can’t even get through all of them. But one of the things that I felt was both incredibly grateful that I still had one baby, and then also not quite knowing how to deal with this shift with the fact that there were supposed to be two and now there was only one. But then of course, even that one was taken from us when about a week later, I went into pre-term labor that was unstoppable. And I gave birth to both babies and the one that had been alive, died at birth, because it was too early to be born and to live.
And I also gave birth to the one that had died in utero. And this began this, a really intense journey of grieving, which is what led me to the work that you described that I do on the side. It’s not my professional work. It’s all just kind of word of mouth, and whoever wants to talk to me and whoever sends their friends to me of supporting others through these things so that they can have more support and feel more understood when they go through what I went through.
Dr. Fox: Was that something that you did intentionally or did it just sort of happen that people started calling you, and, you know, “Hey, I have a friend,” and they say, “Would you be willing to talk to her or talk to them?” Or did you sort of seek out those opportunities?
Shira: So I think it was a combination of both. Only just about three months after our twins died, a couple that my husband knew, that my husband had gone to school with the husband and the couple, they reached out to my husband saying that they were expecting identical twin boys who shared a placenta that had just been diagnosed with Twin-to-twin Transfusion Syndrome. And they were scared and they didn’t know who to turn to. And because they had heard through the grapevine about our story, they called us and we supported them.
And I’ll confess it was extremely painful, actually, at the time, because their babies were still alive. And it was kind of like helping someone else have their babies live when my babies had been taken from me. And it was sharing all the knowledge that I had gained, that I wished I had known at the time before a loss. And at the same time, it felt like absolutely the right thing to do and it felt like something I was doing for my babies. And so what I’ll say is, the way that it began, in my mind, the way that I thought about doing this work was because one of the things that I felt had been taken from me was the opportunity to be a mother to these babies, because they were dead. And yet I had already dreamed about them and kind of planned to be their mother from before.
And so the way it kind of worked in my mind was that, if I could do something that would make the world better, or help other people, and it was something that I wouldn’t have done or couldn’t have done if not for the fact that those babies had once lived inside of me and now died, then that felt like some kind of alternative version of being a mother not like, you know, changing diapers or feeding or, you know, whatever mothers do for babies that live but it felt like something like mothering. And with that framing, it really felt very meaningful to me to support others and those people…by the way, I’ll just mention that those people, it wound up being that their babies also died. So it shifted from helping them get the right medical care to supporting them through loss.
And they, by the way, got the best medical care possible, and still their babies died, which was also an important lesson for me because we had kind of missed the opportunity to know what was happening to our babies before it was too late, and they didn’t. And it showed me an example of just how precarious these things can be, even when you do have the best knowledge and treatment. But that’s a different story for another time. And so, yeah, once I kind of framed it for myself as a kind of motherhood, it really felt like a calling, and then different sorts of opportunities arose in different kinds of ways. And as much as I helped others, it helped me heal to do that work also.
Dr. Fox: Right. So it was somewhat, you know, partially therapeutic in the same time that you’re helping others, it’s helping yourself go through loss.
Shira: Oh, it was absolutely therapeutic. And people would always thank me for the time and for, you know, the effort. And I was always honest with them, that it also helped me. So, you know, it was very mutual.
Dr. Fox: Right. And also, at the same time you develop, I’m sure, very strong bonds between people, because, I mean, this type of shared experience, even though as you said, each story is unique and different, but this concept of this, you know, intense grief around pregnancy is. And to have that and to share that with another, you know, person or another couple is probably something that they’ll never forget. And you probably…I imagine you’re in touch with a lot of these people well beyond the initial loss.
Shira: Yes, absolutely. I mean, I have times of year that I try to go through my proverbial Rolodex of people that over the years I’ve spoken to. And Mother’s Day, which just passed this year is one example of a time when I tried to reach out to as many people as I can remember that I’ve connected to, to just tell them that I’m, you know, remembering their baby that died on Mother’s Day. And for different people, there are other times of the year that I know are connected for them, whether it’s the season of when the loss happened, or holidays, or other sorts of moments of the year.
So, absolutely, I try my best to remember and reach out and it is a bond and a connection that doesn’t go away. And even though many of those people I’m no longer in active touch with, often in the beginning, you know, I’m regularly in touch with them, and they’re regularly in touch with me. And as lives move on, we’re not in active touch, but it’s always special to reconnect at those moments, and for them to feel like their baby is remembered and for me in turn to know that they remember my babies absolutely.
Dr. Fox: And do you think that…you know, you’re sort of part of you being drawn to this, do you think your experiences growing up in the house, you know, of a pretty prominent pastor, you know, your father is a pulpit rabbi, and you’re married to the rabbi of a congregation. And so you’ve always been in this sort of communal, pastoral household, do you think that has anything to do with it or is it just somewhat coincidental?
Shira: It’s hard to know. One thing I know from growing up in my parent’s household is how much of an emphasis they gave, especially my mother, on being able to speak publicly. For me and my siblings, from time to time in our lives, there were moments when we were called on to speak publicly and my mother practiced with us and made sure that we looked up from the page and spoke with enunciation and things like that. And so I certainly attribute my ability to speak publicly about things even when it feels hard, which is part of what this has been for me to growing up in my household.
And certainly, I think that in my role now and in my parent’s role, when I was growing up, supporting people through pain is a big part of it. I can’t say that it’s only because of that, meaning there are certainly other people who do this who weren’t raised in the households of pastors or rabbis, etc. And so I’m sure it’s a piece of it, and also a calling in its own right that different people find. Now I also know other people who’ve done other sorts of things to use that expression of mothering for the babies that aren’t alive, have done other sorts of work that isn’t necessarily direct pastoral care for people going through losses but other kinds of creative responses. I know someone who created a kind of happiness program that wound up being like quite popular and successful that people dealing with all sorts of grief or disappointment or other things, you know, it wasn’t just about losing babies, even though that was the impetus for creating the program for this woman. So, yeah, I’m sure it’s a part of it and also, it’s something that people can do, even if they haven’t been raised in that sort of household.
Dr. Fox: Right. Now, obviously, I think that anyone can go and decide that they’re going to help others and decide that they’re going to talk about it either publicly or just individually. But I do imagine that there’s some just…it’s sort of like an expectation. You know, you’ve always been around your whole family, you know, when you’re growing up, and now we’re just people who help others in many different ways. And I think it’s just sort of your own personal values and culture. And it’s, you know, one of the reasons I’m sure, also people are drawn to you, in addition to just, you know, being someone who’s easy to talk to, and, you know, very caring, I think it probably does have a…maybe even it makes the people who come to you more open about it themselves, I don’t know. It’s hard to know with these things.
Shira: Well, I certainly think that that’s true. I do think that some people who might be hesitant to talk to someone are more open to talking to me because they see me as a rabbi’s wife, and as someone who…I don’t know, is in a more official role, or just someone who it feels more comfortable to talk to. So I certainly think that that has helped people feel open. One thing I found is that a lot of people who especially are in the early stages of this kind of traumatic loss and grief are so just lost in the world and overwhelmed by what they’ve gone through that they find it really hard to talk to anybody.
And I actually remember feeling this way very much. I really couldn’t talk to anybody. And yet, if someone suggests that they talk to me, and they will, maybe because of the role in the same way that people might talk to their pastor and not to anybody else, during certain challenging moments. I do think the role does help open people up. And I’m glad for that, because I do find that it’s often a relief for them to talk to someone but they wouldn’t necessarily have kind of found the energy to do it in all contexts.
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