Ep 190: Generations of Life: Stephanie Butnick’s Genetic IVF Journey

 In this episode of Fertility Forward, Rena and Dara are joined by journalist and mother, Stephanie Butnick, for an honest conversation about IVF, genetic testing, and the emotional complexities of building a family. Stephanie shares how her journey with RMA began after learning her husband carries a BRCA1 mutation, and why they chose to pursue IVF with pre-implantation genetic testing. She reflects on her second IVF experience and how it differed from the first, while also opening up about the incredible support she received throughout her care. Together, they discuss what it was like for her husband to navigate these experiences as the BRCA1 carrier and how they plan to one day talk to her daughters about the journey that brought them into the world. Stephanie also shares how speaking openly about her experience has helped her connect with others facing similar challenges, emphasizing the importance of community, transparency, and keeping sight of the bigger picture throughout the fertility journey. 

Transcript

SPEAKER_00 0:13

Hi everyone, we are Rena and Dara, and welcome to Fertility Ford. We are part of the wellness team at RMA of New York, a fertility clinic affiliated with Mount Sinai Hospital in New York City. Our Fertility Forward podcast brings together advice from medical professionals, mental health specialists, wellness experts, and patients because knowledge is power and you are your own best advocate.

SPEAKER_01 0:36

So today on Fertility Forward, I am really excited to have Stephanie Lutnick, who is here to share her very unique fertility story. She saw Dr. Letterman at RMA, and I feel like our listeners are gonna learn so much about her story with her husband, who is a BRACA carrier. So thank you for coming today. And I'm so happy to meet you.

SPEAKER_02 1:04

Thank you for having me. I feel like I'm like longtime patient, longtime listener, first time caller. And so very excited to be here. I feel like I know you.

SPEAKER_01 1:11

So I'm excited to really get to know you today. So you have like your story is different. I mean, I think everyone has a unique story, but you didn't come to RMA for the average, okay, I'm I'm wanting to get pregnant. Okay, what's next? Had this all come to be? And let's go back in terms of when did you find out about your husband and how he was a bracket carrier?

SPEAKER_02 1:34

The interesting thing is like our journey started at RMA. That was like the beginning. And so the story really begins in 2017, right before my husband and I got married. My mother-in-law, who is fine and now she's actually amazing, she's an incredible, incredible grandmother. She got diagnosed with breast cancer. And they discovered that she was BRCA positive. And so she went through a lot and she's honestly incredible and so strong. And she's fine now or so grateful, but she has two kids. And so once they knew that she was BRCA positive, they said, okay, we have to test your kids. And we were really, it's my husband has a younger sister. We were really worried about her. We were like, we know what this means. We're sort of more familiar with the idea of like, if a young woman who's not married is gonna like she hasn't had kids yet, what it would mean for her to be Broca positive and the ramifications on her life and her ability to have kids. Like that was really at the top of mind for us. And so she didn't have it. Like the test came back negative. We were, it's like this really collective sigh of relief. Thank God, like she's okay. Then of course, my husband ended up testing positive. We were like, oh, oh yeah, like we kind of forgot, like we sort of didn't even like factor that in. I don't even know that I knew he was getting the test. Like it was so different for a guy. And you know, he went to a genetic counselor and they were like, here's your risk profile. It was, you know, it's still elevated, but obviously not as drastically, or as I don't even know how you would his risk profile is still higher than your average male, but different. And so they said, you know, when you're ready to think about kids, here's this doctor at RMA you should talk to. And I think we both sort of like forgot about it. It was like you start screening at 30 something, like nothing really affected us in that moment. Then a few years later, we're like, all right, we've been married a few years, let's do this. And so we sit down with Dr. Letterman, and it was fascinating to talk to him. My husband and I are both journalists. We had like a million questions just about what he does and and just how familiar he was with Brock is specifically and doing this. And so, in a funny way, this was like our first step towards having kids was like sitting in the doctor's office with him. And so I did my saline sonogram. I have a very vivid memory, March 3rd, 2020. And I was like, we're doing this, we're about to have a baby.

SPEAKER_01 3:36

Right before the craziness.

SPEAKER_02 3:38

Yes, of course. But the other piece of this was we had to build what was called a probe. And I don't know any of the science behind this, and I'm so glad it's not my job too. But the way that a lab was able basically they build a probe that identifies, I don't even, I can't even describe it properly, identifies the exact genetic marker that they're looking for. Um again, like not a scientist, amazing people at RMA, so grateful for them. I don't have to think about it, but basically it was like my husband gave a saliva sample, my mother-in-law did, and like they built this probe that like we kind of thought about as like this double helix that lived in in a lab in California. And so that was what they were going to test all of our embryos against. So basically everything sort of picks back up that summer, summer of 2020. I did a retrieval, I got 18 eggs, and I'm Jewish, and I felt like that was a very auspicious number. It means life. And I was like, 18, this is great, what a number. And then, of course, you sort of see the math at play, right? There's like attrition, attrition, four go out for testing. And I was like, okay. And the interesting thing that happened was like this was sort of when I really was, I realized I was like in it, right? Like I was in this journey and that I may have gotten there through a different route, but I was like certainly in it. And so with BRCA, there was a 50% chance that an embryo was affected, affected sort of like the genetic speak for an embryo that is a carrier for BRCA or has the BRCA gene. Again, not a scientist. But so of that four, two were BROCCA positive. So now you're down to two. And at my age, then a few years ago, it was a there was a 25% chance of a chromosomal abnormality in any embryo. So that was one of the four, one quarter. And one was unaffected and chromosomally normal. And I was like, oh no, like this isn't easy. This isn't fun. Like at that moment, I was like, oh, this is gonna be hard. This isn't just gonna be what I had been presenting it as to myself and to other people, which is just like, oh, we're just we're doing it for genetic reasons. I'm, you know, sort of not wanting to identify myself as someone who struggled with infertility, not because I there was any shame about it, but just because I didn't have that baggage and I didn't want to pretend that I, that it was as hard for me to be sitting in the the waiting room doing my tests. It was our first go at this. Like I didn't have the backstory, the baggage that I know so many fan, you know, couples and women who who are sitting in that room have. And so I almost didn't want to like step on that. And so I was very protective of that for other people. And so my journey was really one of like realizing that I too could sort of like claim that title for myself and claim that identity for myself. But you know, I did another retrieval. We the amazing thing about the science is like we tweaked everything. It was like, okay, this didn't really, you didn't respond so much. Got more eggs than next time, more embryos went out for testing and more came back. And then there was one female embryo that came back the second time. I was like, put her in, we're doing it. Like I've gone through this, like I am picking. And that is my daughter Edith, who's almost five. So, like again, feeling very lucky. My first retrieval took, like really not wanting to like complain or even sort of see myself as having gone through anything challenging. I was like, what do you mean? This was so like I, you know, this is so easy, like this is so clinical, but it was quite emotional. And I can sort of walk you through the rest of my story, which gets slightly messier from there. But basically, I again feel the sense of like things went really, really well for me. How lucky am I that my first retrieval took, like, or transfer took, sorry. I almost didn't want to like talk about it. But the thing I did realize was that every time I told someone I did IVF in the process, turns out everyone is doing IVF. Just at this point, five years ago, not a lot of people, as many people were talking about it. And so once I was starting on the shots, this was new to everyone on both sides of our family, like the shots, the this, the that, the meds. My mom was like, oh, it turns out like this best friend of mine, this best friend, oh, they're all their daughters all did IVF. Oh, and this is, you know, this is how I got an acupuncturist recommendation from my mom's best friend's daughter. No one knew that anyone was doing IVF. It's like it sort of opened up these conversations. And for me, that's like a real through line. Even when I get to sort of like the more challenging aspects that happened, sort of trying to have a second child. This idea of just like wanting to talk about it and feeling like because it wasn't so loaded for me, I could just say, like, I did IVF, here's the spreadsheet, someone showed me how to track things, do an ice pack before you inject anything, like really trying to be a person that people could talk to about this.

SPEAKER_01 7:57

That's great. It's interesting because it can work both ways. Some people can be very quiet and not talk about it, but it's interesting to hear this perspective. Like you had a great experience, so to speak, that it was easier for you to share, which I think is a little bit different. But it's interesting also that you mentioned, like when you start speaking about it, you realize that you're not alone, that there is this whole underground network, whether people are bringing it to the surface or not. It may not be there, but the fact that you were going through it and then sharing it with people, I think it's it sounds as though there was a lot of people who were going through something.

SPEAKER_02 8:34

Yeah, you know, when I'm a writer, I'm a podcaster, like my whole thing is sort of trying to make my experiences legible to other people because maybe you're going through the same thing. And I do a lot of that in a in a Jewish context in my work, which is a newsletter called Golda and a podcast called Golda Girls. And so I'm very comfortable with saying, like, these are the things I'm going through. You might like also relate to this. And actually, the best thing that happened to me was that, you know, in the waiting room at Arme, you sort of keep your eyes down, right? Like, you don't want to bother anyone, you don't want to like necessarily I don't. I look around because I'm just like, we're all here together. Let's just like, let's acknowledge it. Like we're we're like sisters in this thing. And and especially doing this during COVID, we were all wearing masks. It was like very eyes down. Like no one, everyone was trying to sort of be careful about it. I think at the beginning of my first cycle, you weren't even in the waiting room. You would wait downstairs and then come up. It was a whole thing. But this girl, she basically was a listener of my podcast at the time. I had a different podcast and she said, have to tell you. She's she basically was like, I know I'm not supposed to talk to someone in this room, but like I listened to your podcast and it's gotten me through so many of these cycles. And I was just like, Oh my God, what? I literally was like crying. I was like, oh my God, I'm here for you. And I found her on Instagram, I messaged her, and I actually saw that she had a baby and recently, and I was like, it was this really, really strong bond. Anyway, as you can see, like I'm a total chatterbox. I will talk to anyone anywhere. But like that's what we need in this moment. And so, you know, someone I saw on Instagram, I think after I'd had Edith, posted that she was BRCA positive and was doing preventative double mastectomy. And I messed her, I said, when you're ready to think about kids, like talk to me about this. I literally was like, my husband is Braca, like is Braca positive. We did this. I'm like, just talk to me. And we did like two years later. And so it's like, I really want to make myself a resource for people because again, like you're there's no real place for people, especially for me. The genetic situation was not my own, right? It was my husband's, it was my mother-in-law's. And it was like, I had none of the baggage. And so I just was like, let me share what I know. And then things get a little bit more complicated for me the second time around, by the way. But at this point, people are like getting sent to me just like talk about what it's like to do IVF. My friend's like my sister-in-law's friend. It's like, I'll talk to anybody. But basically, what happened was that when Edith was about two, I was like, all right, let's do it again.

SPEAKER_01 10:50

And you already have embryos. Did you have any embryos?

SPEAKER_02 10:53

Yes, we had a few male embryos and we're like, let's do it. So it's like summer of 2023, the world's different, the waiting room's different, everything's different. But first, I so I do my saline sonogram, there's scar tissue. And I was like, well, how would we even know that there's scar tissue if I didn't like if I wasn't doing IBF, would I have known any of this? And I feel like that to me is a consistent thread, also, like how lucky I was to have so much information. At times it felt like too much information, but it really, really was helpful. So I did a hysteroscopy procedure, and then I was like, all right, I'm ready. We did a transfer of a male embryo. At this point, by the way, everything has moved from Dr. Lendman is up in Mount Kisko. So I'm doing these drives from the city to Mount Kisco, and it's like because I it's so beautiful, it's so peaceful. I listen to music, I go to the Target after the Mount Kisco Target, it's amazing. Stock off on everything, bring it home. But yeah, so we did another retrieval, it didn't take. And I was like, all right, didn't take, did a bunch of acupuncture, like was like, I'm I'm ready for this. It was actually in an acupuncture appointment on the way, like the morning of the second transfer. And I got a call from the embryologist who said there was a bad thaw. And I was like, a bad thaw? What is that? And they were like, it's what it sounds like, it's a bad thaw. It happens, it's in a very small percentage of times. If the thaw was bad, it's not like a good embryo anymore, basically. It had been downgraded to like a D something. And I was like, all right, what do I do? And there was another one, but it was only, it wasn't really like a perfect one. It was, and so I was like, I'm I was like, I'm in the car, we're doing this. So I we we did the transfer. It did not take. They showed me a picture after, you know, they get a picture of the embryo, and I was like, oh, this does not look right. Like I was sort of even at the moment, I was just like, this is not, this did not go well. And at this point, I actually got in touch with Rena, a friend knew her and was like, I was just like, what's happening to me? Like this was supposed to be easy. And at this point, easy, but like the progesterone shots, nobody, like we can do it, we can deal with it, right? Because it's again, it's so much easier for me. It's like that's sort of this mentality I had. So I was like, all right, did another retrieval. And there was like some drama with the probe. I had to do some, like there was there was always some sort of like thing going on that the labs closed twice a year. Like there was always like, I was feeling like I was very attuned to the calendar and like what season we were in. I did, again, a bunch of acupuncture, got into a really good headspace, did the retrieval, got two female embryos in that fall of 2023, transferred one of the female embryos. It took, I was like, we're back on track, got discharged. And then ultimately what happened was at 60 weeks, went in for my fetal anatomy scan and found out there were like significant issues with the fetus. And like, like I could see it. And I'm not, again, not a doctor. And I was just like, this is not supposed to look like this. And we did an amniocentesis just to find out more. But a few days later, we ended up terminating the pregnancy, which was like it was a DNE, the whole thing was horrific. Like my milk came in. It was, I was like really in bed for a week, like really devastated, just like couldn't believe this was sort of happening. Cause I I think I was sort of like, no, no, the hard thing is the getting pregnant, not this sort of freakish thing that had happened. And so all of a sudden I was in this like other camp of people who had, you know, a second trimester pregnancy loss. And it was just devastating. And I was sort of like, at the moment, I was like, I can't do this again. Like, I'm not ready. Like, I sort of had this moment of like, I could sort of like put on a good face and do the shots and be like, I get it, I'm getting it. But I was like, and again, have that caveat for myself, which is just like it's been so easy. And then all of a sudden I was like, no, no, no, this actually really sucks. This is really hard. And this has nothing to do with IVF, right? Like this is just a thing that can happen in a pregnancy. And so it really was a really difficult time for me because I couldn't just see myself as someone who was sort of like going through the back door and like doing things a little bit differently. I really was experiencing it was a pregnancy loss that was so deeply, deeply painful and affecting. And I really felt connected to all sorts of people who had experienced something similar. I felt grateful that I was able to terminate when I could. And I had a staff that was willing to do that. I felt like really like there was the macro and the micro. It was like on every level, it was just incredibly painful to go through this and to be aware of like the ramifications of it in today's world.

SPEAKER_01 15:14

But did you get support away?

SPEAKER_02 15:16

Yes, I have an amazing therapist through the motherhood center. I had so much support. I mean, Dr. Letterman, like my OB, reached out to Dr. Letterman. I heard from him. I mean, and it was sort of just he was like, if and when you're ready, let me know. And so it took, I'd say, like many months that it was September of that year, actually around around the high holidays. Again, it all for me is like in a Jewish calendar. And I thought, you know what? I think I'm ready to do this again. And so there was one female embryo remaining. I like got myself pumped up. I was like, we're doing this. And it took. And last summer I gave birth to my second daughter, Sadie. And she is like, I'm like in tears just thinking about this. She's gonna be one this summer. She's incredible. And like the thing about her is like I always say, she's so happy to be here. But she's happy to be in the stroller, on a walk, taking a nap. She's happy to be at a restaurant. Like, but in general, like I extrapolate that the most, right? She is so happy to be here. And like I feel like with her, I'm like, I get it. Like, we went through a lot. And like it is amazing that she's here. And like, I just I think, you know, Edith, my older daughter, like she thinks when you have a baby, like you go to the doctor, the doctor helps you find an embryo. Like, it's maybe not developmentally appropriate for her to know any of this, but I'm like, yeah, like this is the doctor who did this for you. And like to me, it's such a powerful thing that I was able to have these amazing, perfect children. And for my mother-in-law, she gets emotional all the time. She's like, these children, these girls don't have BRACA. They will never have to go through, hopefully, what I went through. Like, we've gotten rid of this gene in our family line. And I think that there's something so powerful when you think about tradition and legacy and all the things we passed down. There's also like the genetic piece of that, right? And I know that anything could happen to any one of us, but I feel so lucky that I was able to make sure my daughters were spared this specific thing. And I don't know, I feel like it connects me to my family and to my husband's family. Like it's all so intentional. And I think about that every single day. Like this journey I've I've been through, this amazing relationship. Like when I walked into Dr. Letterman's, I was, I would never have imagined that the emails I would send him, that the things we, you know, the pictures I would email him, being like, Sadie's born, you know, we've been through so much, and it's such an important relationship in my life. And even just getting the chance to be on this show and like talking to you, and even like seeing the RMA emails, I'm like, I'm back. Like this to me feels like such an important part of my life. And so I'm so grateful to everyone at RMA who was really around for this journey.

SPEAKER_01 17:35

It sounds like it was not the easiest path, but it's I'm always amazed just to see people's perspective afterwards of it was not easy and it happened the way it needed to unfold. Like I believe like that your daughter, and of course, the fact that she's appreciating life, she chose you. She was probably so grateful. You went through all this. Here, can I can I help you out? Can I make it a little bit easier now? And the fact that you had a good support system and a good team. Like I think having a doctor that cares about you, the fact I mean, and of course, Dr. Ludman, of all people, of course, he reached out to you to see how you were doing. He's a great guy.

SPEAKER_02 18:18

But you know, I would remember sitting in that waiting room and thinking, everyone here has a story. Everyone is here for some reason. There were all sorts of couples, all sorts of people, and like they were all just in this room together. And I sort of thought about it. It's sort of like there could be like a movie that tracks like all of these women's lives, all these people's lives, and then they converge here in this room, and everyone is is going through it. And I just think, you know, I just remember the staff. I mean, you get so used to seeing it. There was Stephanie at the desk at West 57th Street, and like my name is Stephanie, and every time we come in, we do like a thing. And it's like, I just feel like you have these really, really intense relationships with people you don't know at all, right? Because you see them every other day for a bunch of weeks, right? And then, you know, I remember I was being discharged, which is like a graduation, right? When, you know, the embryo, the transfer is taken. And it's like kind of a little emotional. I remember one time I sent like the bake by Melissa Cupcakes. I was just like, I'm gonna miss these people who I saw every morning and who just took such good care of us. And it's so funny, I always say, like, the most painless blood draws of my life. It's like it's incredible. And you're like, oh yeah, because you do this all day long and you really care. And it's like, I just feel like there were so many moments at so many points on these journeys for me, which means that that means that that's the case for everyone, no matter where you start or where you end. And it's like these small interactions that you have along the way that are just so meaningful and can really change your day, right? Like they can change your day, they can change your mood, they can sort of change your whole trajectory. And I think it's really wild. Like I would have never expected to have ended up here on the on a podcast talking about fertility, but here I am, right? And I'm so proud to be here and to sort of say, like, there's so many different stories. And I think opening up our sense of like who goes through IVF, who this is for, how you do this and how you approach it is really helpful to all of us as we think about just like the things that we need in our lives and our health journeys and our mental health journeys. Like, this is such a big piece of it for all of us.

SPEAKER_01 20:19

I'm curious about your husband. How is he throughout it all? Like, even going back to when he found out that he was a carrier, a Baraka carrier, how was that for him mentally? Did he also kind of think, okay, like we'll just go through the steps, but was it challenging for him?

SPEAKER_02 20:36

As you mentioned this, I realized I probably should have told him I was going on a podcast and sharing our entire journey. But you know what? That's his life. He gets that call a lot where I'm like, hey, so sorry, I overshared about you on a podcast. You know what? What can we do? You know, he's amazing. And I think he always felt very, I think guilty is the wrong word, but like my mother-in-law felt so bad that I had to go through this. I was like, it's what it is, right? Like this is this is it. And like I don't mind doing this. Of course, there are moments where you're like, I can't believe I have to do this, but it was never resentful or anything like that. It was just, this is our family, like, this is the way our family story is going to look. And so once you accept that, it's like you're on board, right? You're like, this is what we're doing, and this is the plan. And so I think my husband always sort of felt that I had to bear the physical burden of his own diagnosis, which really still does has not luckily, you know, affected him beyond just sort of like regular screening maintenance of it. Yes, yes, and vigilance. And then here I am having, you know, I mean, I always say it was worse for him because he did the progesterone shots in my butt. And I was like, it's worse for you. You have to see the shot going in. I don't want to see that. I can do the little follow stims myself. I don't need like, I don't want to see the big shot. But a few times I did, I know I actually feel real, I feel real empathy for people who are either on their own or had a partner who travels a lot and who had to do that. I had to do it a few times. It was not easy. By the way, it's not easy. Totally like you get over it, but like I think the takeaway is like you can do anything. We can do anything. We realized during the Easter. That test us, but like always just was like, it's worse for you. You have to put that, like, oh, like the thick, whatever. So I think for him, he never wanted to feel like a burden in any way. And so, you know, even with the specifically with the pregnancy loss, I was like, I am like therapist, like I have everyone, right? I have all these people checking in on me. I have like, and I said, I'd be like, How are you? And he was sort of just like, I don't think he wanted to take away any of like what I was feeling, or he was sort of just like, I'm fine, you're like, we need to like help you, basically. Like, you are the focus here. And like he would never have pressured me to go, you know, there was a time which we're I was like, I can't do that. I can't go through this again. I can't go through what bersettes was sort of the regular progesterone through the transfer, then knowing that there was uh what we ended up doing because of the specific issue in the pregnancy that we terminated. We ended up doing there was like one lab that could do a CVS to test for the by the way, nothing on the pre-pregnancy genetics panels would have shown that, nothing on the IVF testing. It just is totally different, right? It's like just another thing that could happen. So there's one specific lab that could test a CVS. So at 16 weeks, we would send that out. And at the time I was like, I can't go through that kind of suspense, right? Where like I would have to wait until week what, like just knowing that I might have another situation like that. And then it would there were they were interesting IBF implications because this was from the same batch that Ember we used with Sadie. And it's like it was just like being a sibling, like it was the same thing as a sibling risk. And so I think Dr. Letterman got to sort of walk me through a little bit of that too, which is something that's outside of what we were initially talking about, was sort of like a whole new issue introduced. But I think for me in the moment, I was like, I can't muscle through that, and knowing that it's basically like 30 weeks of challenge, of a challenge, I'm like, not ready for that. But then of course I was at a certain point. And it wasn't the burden I thought it would be. It was actually something I was very excited about. And to know that like it felt like every step of the way, I was like, okay, we're here. Okay, transfer took. And okay, now we're one week, we're two weeks, okay. We're sending out the CBS, like, okay, like all of these things. And then you're pregnant, like then the rest of the pregnancy happens, right? And you're just sort of like, oh, I have many months more of this. It's not just like these early, early markers that I was so nervous about. You sort of have the whole pregnancy stretch out. And then to Ben's credit, he sort of let me run the show and say, like, if and when I was ready. But I think it's really brought us closer, just knowing that we were so intentional about this. And I think at the time a lot of people were like, why are you doing genetic? Just who cares? Just like if you have a baby, like, you know, by the time they're old enough, they'll figure out how to edit it out. Like there was a lot, there was there was some skepticism of doing IVF at all for genetic reasons. And I feel like I couldn't even hear that. I was just sort of like, nope, I'm not interested in your take on my life and my family's future. Like, that's not something you get to weigh in on. And so I think that was an important thing for me too, to sort of say, like, this is what we're doing. Like, there's no room for, you know, opinions about it unsolicited.

SPEAKER_01 24:56

Yeah, I don't blame you. But it sounds as though your husband was very supportive. Like he was there. Yeah. Yeah, it'd be interesting to hear like his perspective throughout it all, but it sounds like he was very supportive. And I'm curious in terms of like your kids. So now that your kids don't have that gene, will you still be telling them your story, you think, when they're older?

SPEAKER_02 25:15

Well, it's so funny because I think I definitely will. Like, this is a story, and I I think you have to keep it appropriate, but like I think it's it's okay to say, like, we went this route. You know, they know kids with all sorts of family setups, which I love. And it's like there is no one size fits all in in my daughter's mind of what a family should look like or how a baby is born. Like, she's like, oh, there's two dads, there's two moms, there's one mom. Like, there's like she once was like, why do we have a why do I have a mom and a dad? And I was like, well, that's just what we look like. Like that for her was like sort of unusual. And so I love that we exist in this world where there's so many options, right? There's so many paths, and that is normal for kids. And so I think that makes it easier for me to say, like, there's different ways that people have baby. And we did, you know, as she says, you go to the doctor and the doctor tests the embryos and make sure there's okay. Like when she used to say embryo, it was like embryo. And I'm like, exactly. Yeah, that's how babies are made. But you know, she saw my C-section scar and she's like, What's that? And I was like, Oh, that's where you came out of. That's where my babies come out of. And she's like, and then I just not where all babies come out of. Like, there's a lot that happens, but it's like, yeah, I want to be so open about that. And I want to basically say, like, this magical, amazing scientific thing happened for you to be here today. And like, to me, it's so steeped in in meaning and and just just this incredible human connection that links me to her. And I don't know, I remember like seeing that embryo on the screen, and it's like this transcendent moment where you're sitting there in like the highway, however long you have to, probably it all disappeared from my memory. I had to look all of this up before we talked. I mean, I have it like in emails and the whole thing, but I'm like, what did I do? It's like it goes away, right? Like you forget that it never happened, right? But that's why people have more kids if they forget all the time. Yes, totally. But it's like there's this moment where you're sitting there after the transfer and you have a picture of the embryo. Do you have to just stay there for a little bit and chill? And I always just feel like this magical thing has happened, and like maybe it'll take, hopefully it will. You go to sort of like whatever you go to in those moments, and you just hope and you feel. And I just think that like this was an unusual route for us, maybe unexpected, but it was like such a beautiful, meaningful one that has given me so much to think about and so much honestly to talk about.

SPEAKER_01 27:34

And it sounds like it you it was an opportunity for you to connect to people that you may never have would have connected with prior. I mean, with doctors, with nurses, with people in the community who may be going through something similar. So you shared all of this on your podcast, like in real time.

SPEAKER_02 27:52

Well, it's very funny. When I was pregnant with Edith on my first podcast, I said, let's do an episode all about fertility in a Jewish context. And I was like, or is it no? Sorry, I did a fertility special and then a pregnancy episode. And to me, it was like the ultimate thing. I'm like, I'm a journalist, I'm gonna understand this and like it's everything's gonna go to plan. Of course, I ended up having the baby before the episode was edited because I had 37 weeks. Doctor's like, you're going in, you have pre-eclampsia, whole other thing. But like that to me is the funniest thing where I was like, oh, I thought I could like report this out and like control it. Of course I could not. So the end of the beginning of the episode is sort of me doing a voice note being like, hey guys, can you guys finish the edit? Like, I gotta deal with something. And then at the end, I'm sort of like, hey, it's me. I have I have my baby here. So it was sort of the perfect end to a to a pregnancy episode. But I've shared my story and I've shared not the details of the pregnancy loss, I would say, to this degree, but I'm I'm open about it because again, like I think that's something that people don't talk about. And like I want people to know that I'm like someone they can connect, a friend who's going through it, or someone who can talk about it and figuring out when you're ready to try again. And like that's not an IVF story at that point. That's just sort of a pregnancy story, a pregnancy journey. And like there's so much here that connects us. And I think these are such isolating moments for a lot of us, whether it's IVF, whether it's infertility, whether it's an unexpected genetic diagnosis, just remembering that you can reach out to anyone. And like, this is again like this is the sisterhood that binds us. And I think that like nothing I want to do more than talk to people who are going through this and try to help them through on their journey, the way so many people help me.

SPEAKER_01 29:26

I love that. When I, you know, you sharing your story, it was kind of making me think about Victor Frankel. Like his story, Man Search for Meaning, it's great if you haven't. It has nothing to do with fertility, but it's his own like Holocaust story, but like in a psychological lens. But where his story is so powerful and your story is so powerful, and I see how they're very similar, is your approach to living life and your approach to things. Your story, the way I see it, is in the lens of not being the victim in your story, but being the hero in your story. And even your mindset through it all, even in the hard times, at least the way I see it, is you really saw yourself in the end. You looked forward, you didn't look back. And it's pretty amazing to see that. Like, I think for me it's a great reminder. Like, how are we gonna live our lives? Are we gonna live our lives on the past or are we gonna look ahead and see the possibilities of what can be?

SPEAKER_02 30:22

And I think this is the kind of thing when you're doing shots every night and you're trying to do it, and you're like, oh God, I have to do another retrieval. It is really hard to see the big picture. Like it is incredibly hard to sort of, and then when you're like, oh, if this one takes and this, and this is when I'd have the baby, oh my god, I'm gonna be pregnant. Like, you can't play that again. I feel like I learned very early on. Like, I did a transfer and someone was like, Well, what would the due date be? And I was like, nope, not thinking about that. Like, this is my 10 days. Like, I'm not taking it for like just you're just sort of you go day by day in a way that actually is okay, right? Like you're in it, and like you just have to get through this day. You just have to get through that next exam, that next ultrasound, like that next thing. And I think there's like a series of small milestones, and then all of a sudden it's like, oh my God, I'm I'm doing this, we're doing this. This is real. And I think, you know, I was talking to my therapist, my incredible therapist in the motherhood center, who had been with me. Actually, someone connected me with her when I was starting IDF. They were like, just talk to her. And it was, it's such an amazing relationship that I've had for support throughout all of this. And still, and I said I was like, I thought it was like some bit of postpartum. I forget where I was with Sadie, and I was like, it's just so crazy, like how quickly this happened, like this baby. And she's like, Are you serious? She's like, What are you talking about? I was like, it just feels like it just like it just happened. She's like, Did you forget everything? And I was like, Oh, it's true. Like in the end, it's all worth it. And obviously, I yes, and I I'm at the end of my story. I have a incredibly happy ending. I have two amazing daughters. We never have to move out of our apartment because they're both girls, like we're gonna share a room together, like everything worked out, right? And I know that's probably hard, but you know, for someone who is in the middle of their journey, that's hard to hear. But I think when you're in the middle, it's like it's okay to be in the middle of your journey, right? Like it's okay to be going day to day, get day by day, and like remembering these small milestones that keep you going and like remembering that you are in a room full of people who are all in it with you, and like you can smile at them. You can smile at them, you could say hi, you can break that silence that so many of us feel around these issues and just say, like, this is what I'm dealing with. It has nothing to do with me. It's not like it's not my fault, it's not my mother-in-law's fault. Like, this is just where we are, and this is something that we are able to use to make our family journey easier, better, and just like more effective. Yeah.

SPEAKER_01 32:35

Well, you kind of answered. I was gonna ask uh to kind of wrap it up is is there any advice that you would give to someone in your wake? Anything that you would possibly do differently, or anything that you think is really important in someone who's going through something that's is really challenging, someone that's struggling.

SPEAKER_02 32:53

Okay, this is not maybe what you want to hear, but like there was a spreadsheet. My friend told me, she's like, do a spreadsheet because you're gonna do if you end up doing multiple cycles, you will forget the specifics that in the moment you were like, I will never forget the migraine I had on day 10. You're gonna forget it. So it's like, and it's not an obsessive log, but it's just like, here's my medication, Matt's because like that varies, right? So it's like, oh wait, look, I doubled my dose of this, and look how many more, look how my follicles are measuring at this much. And like again, we don't know this, like there's so much we don't know as patients, and that's important, that's good. But like there was a way where you could be like, oh my God, this, I felt terrible this day. Oh, I feel great this day, but look at last time. So just you have something to measure to because the farther you get away from it, and then all of a sudden I like I made a new tab of that doc when I started again after after Edith. And a new, it's like, oh, you can go back and sort of like check your notes and check, did this hurt? Or you know, and we had something where I had a bad reaction to one of the oils in the progesterone. And I can never remember if it was it, the sesame oil or the olive oil. Like it was like, I can never remember. And at the time I was like, I can't forget this one detail. And then look, you do. So it's like, I think a way to keep a log is a small way to exert some form of control over what you're going through and just sort of to like be tracking it and to be aware of how your body is reacting, what feels good. Oh, did it feel good to go for a long walk today? Did you do an ice pack? Did you do a heat pack? Like, what are the things you're doing? And I feel like it stabilizes you on your journey to be like, I'm here, I'm present, I'm marking how I feel, and I am sort of getting through it.

SPEAKER_01 34:26

I think that's great advice. It's so true. We think when we're in the moment, oh, I'm gonna remember everything, but it's amazing how life can just take your mind away from remembering the small, tiny things from day to day. And having that track spreadsheet can be a great way to look back. And I'm sure also for the doctors, I'm sure they appreciate when you can go back and say, okay, this worked, this didn't work. Should we try this? We try something else because these two things didn't work. So at least having some form of a record can also, I'm sure, help them with their job.

SPEAKER_02 35:00

Though I do love, I used to send emails being like, I'm sorry, how many embryos? Like, what's the deal with the embryos? And they're like, here's the deal with your embryos. Like, I'll just like, I'm like, that's not information I keep, but it's like I always go back to my email being like, this and the days and the gradation. It's like, I also think it's okay to like not know a lot of this stuff and to sort of say, like, oh, you know what I used to love doing when they would draw the circles for where the progesterone should go. I that was my favorite thing where they could like do a sharpie on your back. Yeah, I'd be like, Can you just do that again? And they're like, Yeah, of course. And it's like, I wish I did. I had to gasmate. Yes, yes. And by the end, I was like, you know what? I think anything's fine. But it's true, it's like there are things you can ask for. I think someone told me they were like, Oh, you know, they could draw sharp, the nurses can draw a sharpie on basic, like a target on both sides. And I think that was great. And it was just like one small additional interaction where someone's like, I got you. And I'd be like, Did I do it wrong by doing it here? And they'd be like, You're fine. And the answer was so often, you're fine, you're doing this right, that like it was actually really validating to hear.

SPEAKER_01 35:57

Yeah. Good to uh get some positive reinforcement for sure. Your story's incredible, like it was not what I expected, which made it that much more interesting. I thought we were like all broka, but interesting how that's what got you through the door. But ultimately, you had a much longer story and journey, but it led you to everything that's happened today, which is pretty remarkable. And for sure, I I know our listeners are going to get a lot of good nuggets from you, which I think is great. And I appreciate you being so vulnerable. I know it's not easy to open up, and I feel like your story will help other people. And people should check out so your podcast is Golda. Golda Girls. Golda Girls, like Golden Girls with Golden Girls.

SPEAKER_02 36:41

Yes, exactly. And you can find it wherever you listen to podcasts. We launched a few weeks ago. It's really, really fun. And then my website is goldaguide.com. It's sort of like a Jewish lifestyle guide with newsletter events, fun things like that, tons of mahjong. We have everything. So yes, and yes, it's the best. So yeah, I mean, it's sort of just like brightness, beauty, and connection. That's what I'm all about.

SPEAKER_01 37:02

I love that. So how we always end our podcast is with words of gratitude. So what are you grateful for today, Stephanie?

SPEAKER_02 37:11

I'm really grateful to Dr. Letterman. Like, I'm grateful for him being on this journey for us. And I think that as I sort of like went back to my records to be like, what did I even go through? It's like, oh, he was there for all of it. And he was there for tons of other people, not just me. And like I think that it was really, really special to have someone who really understood what the specifics of what we were going through and like the emotional side of that too, right? Like we were solving one piece of the puzzle, but that still exists, right? Like that's still sort of something that will accompany my husband on his for his life, and like that's still sort of part of our lives in a way. And I think that he was such a good resource and such a good friend to us along the way and so caring. And I'm grateful for you and for having me on this show and just for getting the chance to again like talk about this because I just feel like that's so important to do.

SPEAKER_01 37:59

It's cathartic to let it out too. I think so much. And, you know, and I think we hold on to that, to the stress, to the weight of it. And when we actually share it, not only does it help other people, it also helps ourselves to really let go of that tension that that isn't healthy. It's interesting. I was gonna say when you were speaking and you were saying how you wanted to talk to people when you were sitting in the waiting room. And I was thinking that's what I'm grateful for. People like you who like small little moments of like giving a smile to someone, opening the door for someone, or someone doing something kind, even that small little thing can really make a big difference in their day. And it sounds as though it that helped you kind of to lighten up the mood. But I think if anything, it was such a gift to other people because I'm sure what you're going through when you're going to those appointments can be a lot. And just kind of lightening up the mood a little bit, I'm sure, made a big difference to their experience. So grateful for you and for others who, you know, small moments of joy and happiness and kindness. We need more people in the world like you. So thank you so much for coming on and good luck with your family. Thank you so much. Thank you so much for listening today. And always remember practice gratitude, give a little love to someone else and yourself, and remember you are not alone. Find us on Instagram at fertility underscore forward. And if you're looking for more support, visit us at www.rmany.com and tune in next week for more fertility forward.