Simi Hersko, who was previously a Healthful Woman guest to talk about ATime, joins to talk about her own experience. Simi’s story includes struggling with infertility, miscarrying twins after IVF, and choosing not to resuscitate her twins born at 23 weeks.
“The Choice to Let Go” – with Simi Hersko
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Dr. Fox: How’s everything going with you, the family, COVID?
Simi: Well, I just got my shot. So…
Dr. Fox: You just got your vaccine. I know it’s gonna be the big ad, Simi got the vaccine. It was the couple’s vaccines yesterday, right?
Simi: That’s right.
Dr. Fox: It’s amazing.
Simi: We’re already in, you know…
Dr. Fox: There was some hesitation at first to do it initially.
Simi: A lot of hesitation. But with a lot of…what should I say?
Dr. Fox: Arm twisting?
Simi: That’s right.
Dr. Fox: Cajoling?
Simi: That’s right. Yeah, you can say that.
Dr. Fox: Healthy convincing?
Sim: Healthy convincing, yeah.
Dr. Fox: Healthy convincing. Well, good. Well, I’m glad that’s done. And I’m glad hopefully, the COVID will be behind you. Thanks for coming on the podcast. And we’ve obviously known each other a long time. You’ve been on the podcast before…
Simi: That’s right.
Dr. Fox: …in a different capacity that was over the phone due to COVID. But now we’re all vaccinated. So we’re seeing each other in person…
Simi: Yeah, without masks.
Dr. Fox: Yeah. It’s great. And then before, we were talking about ATime and the work you do as an organization, but today, we’re actually talking about your own story, about your own birth. We’re first gonna talk about your birth of your twins in 2012, the pregnancy loss that you had, and then we’ll go into happier times in 2015.
Simi: Oh, yeah.
Dr. Fox: The birth of your daughter.
Simi: Oh, yeah.
Dr. Fox: So take us back to 2012. At the time, that pregnancy before you got pregnant, who is Simi Hersko? Where are you in life? How old are you? What are you doing?
Simi: So I’m just a plain gene regular woman and trying to have a baby. Actually a couple. We were going through infertility at that point for six years. Actually, when I became pregnant in 2012, it was a really anticipated…I wouldn’t say highly anxious, because I wasn’t that anxious in terms of I didn’t know that being pregnant with twins was such a… I mean, I knew it was a high-risk thing, but I wasn’t really…I didn’t know to what extent I need to be anxious. But so this is coming after a couple of failed IVF cycles and an intense infertility diagnosis. So I was pregnant with twins. It was the second time I was pregnant with twins. The first time I was pregnant was in 2010, or ’11. I’m not really sure. But it was…
Dr. Fox: We have 2010 in our records.
Dr. Fox: Yeah.
Dr. Fox: I guess.
Simi: But you know what? It was just a phone call then.
Dr. Fox: We could have been wrong, you know.
Simi: It was just a phone call then because I had called in to say I was pregnant. And then when I was like, seven weeks pregnant, that I had lost the pregnancy. And that was the time when doing IVF actually meant always transferring two embryos.
Dr. Fox: Right. Right. Ten years ago.
Simi: At this point it’s over. They’re only doing one.
Dr. Fox: Right. Were you working at ATime at the time?
Simi: No, no, no.
Dr. Fox: No, this was pre?
Simi: Yeah, I was still working at my regular old job. And actually, I was working at a job where it was…the environment was a little high anxiety. My boss was a pushover narcissistic, I hope he’s not listening. It was in a highly anxious job, but I was really doing okay. And I was actually looking forward to not needing to work anymore. And then this one day, it was actually, I had been to the doctor, I had seen you. I had seen Clouser actually. And they had told me then that my water level was a little high. And they weren’t sure if everything was fine. But they said I should come back two weeks later. And then we came back and they said everything was fine.
Dr. Fox: Right.
Simi: That was no a Friday
Dr. Fox: Right. How did you find our practice? I’m curious, because normally you would send you to our practice. So who was the you back then?
Simi: Louis sent me. So actually one of our very good acquaintances in your place. And she was like, “You have to go to them, you have to go to them.” And you guys were pretty popular at that point already in my community. So it was sort of like a no-brainer that I was gonna go to you guys.
Dr. Fox: Okay. And you said you were not so anxious about having twins.
Dr. Fox: And I imagine that that’s meant a lot of excitement.
Simi: I know. We were really, really excited. Yeah.
Dr. Fox: Yeah. You said years of infertility, right?
Simi: Yeah, it was five intense years.
Dr. Fox: Wow. What was that like coming into pregnancy? I mean, five years of infertility, you’re trying to have kids, I mean, were your family’s like, all over you?
Simi: So again, it had been my second time that I was pregnant. And coupled with the fact that we had other failed IVF cycles and everything that we were going through being pregnant was very, very exciting. It was sort of like something that I was part of already, you know, being part of a big family and everyone having kids and finally, I was there too. And everyone in my family knew that we were pregnant or that I was having twins.
Dr. Fox: So they all knew you’re having twins?
Simi: Yeah. It was very funny because there was the Bugaboo stroller hat was a fairly new thing. And they didn’t have a double stroller in. And I remember my husband saying, “I’m gonna call up the company and see if they can make a twin stroller for us.” It wasn’t an identical twin pregnancy. So it was fairly easier than a regular twin pregnancy. But it was twins. And it was a boy and a girl. And we were really, really excited. And I knew that we had no embryos left. So this was gonna be our, you know, this was…we weren’t gonna jinx this. This was gonna be something. So then when we came in, and you guys said that everything was fine, like all the anxiety that I did have sort of like melted away, and we were good. We were really excited.
So on Friday, you guys had said that everything was fine. And then on Monday, I went to work and it was a hot day. And I just remember calling my husband and saying, “Come pick me up. I’m not feeling so well.” So he came to pick me up and I went home and I took a shower and I went back to work. In hindsight I think I was leaking that night. Suddenly, I started having like this weird feeling. I wasn’t sure it was contractions because I didn’t really have contractions to know what it was. I was 23 weeks then. I remember calling up my sister and I was like, “I’m not feeling so well.” And she was like, “What’s going on?” I said, “I don’t know, I think my water broke.” She’s like, “Why do you think your water broke?” I was like,” I don’t know, involuntarily something happened. I didn’t do anything, but I think something is wrong.” And she was like, “Okay, you know what, let’s time the contractions. Let’s see if it’s consistent.” And then I was having contractions like five minutes apart. And we had timed it, and then she was like, “You know what, I think let’s call the doctor, let’s see what they say.” So I called in and I was waiting for the service to have a doctor call me back. And then I was having consistent contractions. I called my husband up and I was like, “You have to come home, I think we have to go to the hospital.”
Dr. Fox: Right. How long had it been since you in retrospect, you think your water broke between then and when you started going into labor?
Simi: It must have been…well, my water definitely broke out like apparently, it was probably like 9:00 at night. But you know what, when your water breaks down, and you don’t really know what your water breaking is like, because you never had a baby? You’re like, “Did I pee on myself?” It’s like, “I don’t know.” So then when the doctor called back he was like, “You know what…
Dr. Fox: Of course you weren’t expecting it to happen?
Simi: No, not at all, it was not expected. It was not even something I knew that I had to be afraid for in hindsight. Yeah. So [inaudible 00:07:46] was actually there. He was on call. And he said, “You know what, come over, let’s see what’s going on.” And throughout the time in the car, I was like, “No, I am gonna be such a fool. I am so embarrassed.” But then I was having contractions consistently. So I was like, “I think… I don’t know. I don’t think I’ll need to be embarrassed.” So then we came into the hospital, and he took a test. I’m not really sure what it is. I guess the swab to check whether or not it’s the amniotic fluid. And I don’t remember how much time had passed, because it’s a little bit of a blur. But he came back and he said, “Yeah, your water broke.” And I was like, “Okay, so what does that mean?” He was like, “That means that you are gonna have to stay in the hospital until either we’re gonna try to stop the contractions and see what’s going on, or hopefully you’ll be able to pull through and we’ll see how it’s gonna work out.”
At that point, I still don’t think we realized what situation we were in because we did not anticipate the babies coming. We really didn’t, it wasn’t even something that we discussed. Like it was sort of like, “Okay, we’re gonna…” So I called my mom, she was in Florida, and she was like, trying to figure out how to come back. At that point they put me on to magnesium, which is the worst thing ever. And I guess some other concoction of stuff to try to keep the labor from coming.
Dr. Fox: Yeah, I mean, it’s usually magnesium and there’s steroids and…
Simi: Steroids? We definitely got the steroid jab.
Dr. Fox: Yeah. And antibiotics…
Simi: That’s right. Yes.
Dr. Fox: …and essentially something for contractions. And at the time I’m just trying to get a sense of, you know, you’re coming in, you’re 23-ish weeks. It’s a very difficult situation, obviously. But you’re saying that you didn’t grasp exactly what was happening, which is normal. That happens a lot. It’s a very…it’s a whirlwind. There’s so much happening at once. There’s so many things to understand, to learn, to listen, and people start throwing numbers and figures and facts at you. How long did it take from when you got to the hospital till you sort of realize, “Whoa, here’s the situation. Here’s the decisions we need to make. Here’s what the possibilities are.” Was it hours or was it days?
Simi: Well, the decisions that we were gonna make were actually only done once we had to make the decisions. We were sort of in fight or flight mode, it was sort of like, as a couple, we were really scared. Because the prospect of imagining that this was going to end in not a good way was not even something, maybe we were in denial. We were also young, not very young, but young. I don’t even remember discussing what we were gonna do if the worst case scenario was going to happen. It was sort of like, “Okay, we’re gonna… Let’s see what the doctor’s gonna do. We’re definitely gonna pull through.” Everyone in the family started telling us stories about people that they know, okay, someone that their water leaked, and everything was fine. And the water came back to normal. And well, at that point, I wasn’t so familiar. And I didn’t really know the stories that people are telling, because some… when your water leaks, it can replenish, but when your water breaks, it usually doesn’t replenish.
Dr. Fox: Right.
Simi: So being on admission took up two days of my life. And I was really, I was not there. I was sleeping a lot. I was really not there. By two days later, I was up and about, and I was feeling much better. And some of my friends started coming to visit me. And we were like, “Yeah, you know what, we’re in it for the long haul.” And my friend came and she was hanging posters on the walls, to make the situation lighter. My husband was really tired. So he would go to sleep, and some of my brothers would come to sleep with me. So that I shouldn’t be there alone. But I don’t remember thinking this was going to be the end. I remember thinking, “We’re gonna pull through this.” And…
Dr. Fox: Right. So you were pretty hopeful at that point?
Dr. Fox: Yeah. Okay…
Simi: Maybe I was naïve.
Dr. Fox: No, I mean, listen, people….when you’re in a situation like that some people feel hopeful. Some people feel dreadful, some people switches off every day or every minute or every hour, sometimes it depends who walks in the room.
Simi: That’s right.
Dr. Fox: You know, you could have a very optimistic doctor, or nurse, or a very pessimistic doctor, nurse. And it’s just…
Simi: That’s right.
Dr. Fox: …it’s one of these things. It goes back and forth a lot in those situations.
Simi: Right. In general, though, as a couple, both of us are more optimistic people. So even when we found that our infertility diagnosis, which was pretty bleak, we were really optimistic, even though at one point, we were not sure that we would be able to have kids, or pretty good like that, like, I would say, we were really good about it, and we were really optimistic and positive. So when this happened, this didn’t break us. It was sort of like, “Okay, you know what? Something happened.” We’ve been through [inaudible 00:12:40] until then. So we were gonna make this through too. It wasn’t something that was gonna break us or something that was gonna break me or it was definitely, I guess, it was also part of the way we took things in life. So the fact that it happened again, maybe it was naivety, maybe it was positivity in a naïve way. But we were okay. We knew that we were gonna make it through if we made things through on [inaudible 00:13:05], we were gonna make this through.
Dr. Fox: So it didn’t really dawn on you that the kids might not survive. It just I mean…?
Simi: No, no, I didn’t. No, we didn’t think about it that way. And then on Friday, Dr. Silverstein came by and I have never seen such a straight face in my life. He’s usually, you know, a rah-rah guy. And he’s sitting down on my bed. And he’s very serious. And I was like scared. Like, it was an interesting thing for me to see him being so serious. And he was telling us, what’s gonna happen if the babies are born, and we’ll never be able to have a baby naturally, it’s gonna have to be with C-section. I was like, “Who cares. Like C-section, not C-section, as long as we’re gonna have healthy kids, it’s not gonna, you know, C-section, it’s just gonna be another hurdle, it’s gonna be fine.” But then on Friday, I started noticing that some things were weird. And by Friday night, you came in to the picture, you were there. And I guess I went into labor again, at that point. I think I started having the infection then, you were taking care of me all night. There was a lot of back and forth. But at that point, we still didn’t think. I knew that my labor was back, but my husband was drinking and he was having a great time, he was eating. And again, I think it was just sort of like, “Okay, you know what, let’s see what we’re gonna do. How we’re gonna make this through this night.” But then once the night was over, I was feeling better. They took me back to my room. And then I started having contractions every five minutes. And it was probably on Saturday, like, 3:00, 4:00 that I was taken downstairs to the LMV again. And then from there on it was yeah. That was the beginning of the end.
Dr. Fox: It’s very hard in that situation, obviously, for you guys, but also, for the doctors, the nurses, for the pediatricians, there’s the reality of the situation that we know, the reality of the situation that you’re 23 weeks pregnant, with twins, your water’s broken, you could deliver at any moment. And you wanna be hopeful, you wanna be optimistic. But you also wanna be realistic and make sure people understand sort of what the situation is. And it’s a very tough balance, because you don’t wanna give people false hope. But you also don’t wanna be such a downer, because things could go well, it’s not like it’s automatically gonna go bad. And so it’s a very tough balance. And everyone’s in a different place on a different day in sort of where their head is. In which yeah…
Simi: At that point, I was not in a good place.
Dr. Fox: Yeah, well, at the end, it’s a very tough situation. And to try to sort of work through that. And so it was really that afternoon, when it became clear to you that this is not heading the right direction?
Simi: Well, I was consistently contracting, you guys were trying to stop it. It wasn’t working. I was really not feeling well. I remember thinking to myself, “I wish I can just start all over again.” And then I was like, “No, but I can start all over again, there’s two babies there.” The truth is, I was a little worried about the baby whose water broke, because you guys had told us that without water, the baby had a very small chance of surviving, but we were hoping that the other baby would be fine. I guess we were open for a miracle. But in the back of my mind, I was worried about having a sick baby, knowing that not having water for at least a week, it was almost a week at that point.
Dr. Fox: I mean, it’s more so that that baby’s more likely to be infected. And they couldn’t…
Simi: That baby didn’t end up looking so good either.
Dr. Fox: It’s also sometimes why did the water break? And sometimes it’s a problem from the beginning, which caused it. I mean, there’s a lot of unknowns at that point. And one of the things I wanted to talk to you about now because I mean, listen, we spoke then 10 years ago, it was a different conversation, but…
Simi: It’s 10 years?
Dr. Fox: Almost, it’s nine plus. When someone’s in that situation, right? You’re 23 plus weeks, and you’re in labor, right? There’s basically two directions that can go. One direction is this is gonna be a very premature birth, in which case we’re gonna give you all the medicines we can, do a C-section if necessary, resuscitate the babies, intubate them, give them all this stuff. And the outlook for them is it’s not zero, but it’s bad, right? So they’re very likely not to survive. And if they survive, they’re very likely to be sick, right? That’s one way to go. And the other way to go is, this is a pregnancy loss. This is a miscarriage. And there isn’t like a hard line between one and the other. Clearly, if you’re 16 weeks, it’s a miscarriage. And clearly, if you’re 30 weeks, it’s a preterm birth. But as you start getting towards the middle of those two, it’s hard and a lot of it is based on sort of what’s the prognosis? And what are the parents thoughts on this? And ultimately, you had to make that decision about, “What are we doing? Right, “Am I doing a C-section on these twins? And are we having the pediatricians come to resuscitate them? Or are we turning down the lights and starting like a grieving and mourning process for losing the pregnancy.” Do you remember having to make that decision at the time?
Simi: Yes, very much so.
Dr. Fox: Yeah. Tell me about that. How that was for… I mean, I remember at my end? I’m just curious, what was it like on your end?
Simi: So thankfully, I find myself really okay. And the more exposed I am to people who have to make that decision, I realized that we were really lucky that as a couple, our decision was unanimous. It wasn’t he wanted something different than me or that he felt different than me or vice versa? We were both really concerned about raising, you know, once the pediatrician started coming in, and you started coming in and telling us what the prognosis is gonna be for the twins that are born at 23 weeks and five days, we didn’t feel… So besides for the fact that, yeah, we had to make the decision. So yeah, we discussed that with our Rabbi. And he basically said…and he was having this conversation with, for like, at least 20-something minutes. You guys were going back and forth. And then ultimately, he came back and said, “The decision is yours. You can do whatever you want.” And my husband was like, “Well…
Dr. Fox: Were you expecting him to say that? Or were you expecting him to tell you what to do?
Simi: No, I think my husband was like, “What would you do?” And he was like, “I wouldn’t.” And then I think it was a relief for us because we were really scared about having 23-week twins. After everything we’d gone through to have them and to raise to special needs kids, it was very scary for us to think about it. And as much as we wanted the babies, and as much as we wanted to have a family, and be part of everything that everyone is part of when they have kids, the prospect of raising two special needs kids was very terrifying for us. So when he said, “I wouldn’t,” it was sort of like for us, it was like, “Okay, you know what, we’re not crazy.” Like, we’re not crazy that we don’t feel ready to do that. But on the other hand, it was very scary for us to let go and just let go of two babies that we waited for so long. And it was the easy decision for us. But it was a very, very tough and emotional decision. And again, I’m very thankful that we were both on the same page, because I know that a lot of couples do sometimes have the questions of, “I do or I do want, I don’t feel like it could…” Some people feel like they can do it, like they can’t just let go. It’s a way of coping. But for us to think that we would have to raise two special needs kids, it was terrifying for us. Snd the pediatricians were going back and forth and telling us what it would be like and you too. So it was sort of like a decision that we…I wouldn’t say we were happy, we were relieved that there was the choice of saying, “You guys don’t have to do this.”
Dr. Fox: Right. So were you relying on anybody else for advice and support besides each other? And of course, the doctors and your Rabbi? Did like any family or friends, did you ask them? You said, “We’re keeping this in-house?”
Simi: No, no, my parents are actually amazing. They’re really, really respectful for our decisions. They will never ever make the decision for us. They’ll support us, but when it came to this, there was no, it was basically the doctors, obviously, we relied 100% on you guys. And the rabbi that told us that, “You know what, 23 and a half weeks is a very gray line.” It’s…
Dr. Fox: Yeah, it’s one of the hardest things in our field, what we do. It’s one of the most difficult situations. I don’t mean difficult because we don’t know, it’s difficult because there just isn’t a right answer. And it takes a lot of time and a lot of thought and each couple feels very differently about this. I mean, listen, 20 years ago, no one would even had an option to resuscitate 23-week twins, because the survival, they would have said is zero, so there’s not [inaudible 00:22:27]. But you can resuscitate them. And everyone has a story of someone knows someone who has a baby who was born 23 weeks and is either perfectly fine, or…
Dr. Fox: …okay, or basically fine, but there’s also all the people who had 23-week twins, who they were in the NICU for three months, and they didn’t survive, or they didn’t survive right away, or they’re born and they’re very, very sick. And you don’t hear all those stories, and it’s very hard, and you give people numbers and percentages. But that’s not…it’s not what people need, right? Percentages are not really, I mean, they’re helpful to a degree, but it doesn’t give you answers. It’s a gut decision by the parents of “Which way are we going here?” And people feel very differently.
Simi: The thing is also that I was exposed to…I had a brother on, well, that worked in a special needs school and he did have a lot of kids there that were born severely early. Not 23 weeks but 24 and 25. And it’s early childhood center. So meaning to say that, you know, and I was exposed to what these kids were going through. And again, as much as we wanted these babies, knowing that resuscitating them…let’s say if they were resuscitated, everything did end up and they would be able to get out of the hospital and they would be “fine” we didn’t feel ready to do that.
Dr. Fox: So after the decision is made, what do you remember about the birth itself, the delivery?
Simi: It’s a weird thing to say but it was a very tranquil environment. Maybe also because knowing the hospital staff, knowing that this was gonna happen, there were a lot of high emotions, it was a very sensitive and very, let’s say, emotionally draining time, but it was also very calm. And the environment in the room it was sensitively calm, but chaotic. I remember you being a little nervous. You know, I was in labor, but you guys weren’t expecting that I was gonna give birth so quickly. And then suddenly, I was like, “I think I need to push,” and there were tons of things, I mean, it was a tiny room. I think the room was as small as this.
Dr. Fox: Yeah, it’s the smallest room they have in labor. I remember that vividly.
Simi: And you pushed that couch out of there.
Dr. Fox: It’s like a closet. Yeah.
Simi: I remember thinking, “I don’t know how to push. I’ve never pushed a baby out. How am I gonna know what to do?” But you know what, I guess it’s a natural instinct. And I remember pushing baby A out. And then I was like, “Well, I’m not done yet, I still need to push another baby out.” It was a very sad, a really, really sad time for both my husband and I. As a doctor, tell me what you saw?
Dr. Fox: I mean, it’s horrible. I mean, we try to keep it, as you said, peaceful…
Simi: It was, right.
Dr. Fox: …tranquil, quiet. And it’s part of the reason that that decision about what we’re doing changes everything, right? If it’s a situation where we’re planning on resuscitating, I mean there’s this thing, we’re gonna deliver in an operating room and there’s gonna be 55 people on standby, it’s gonna be the whole team, the lights are gonna be bright, it’s a different environment. But if it’s a pregnancy loss, you’re going through one of the most horrible events of your life, physically, you’re gonna be okay. I mean, things can go wrong, and we watch them. But basically, it’s an emotional thing. So we try to keep your pain as little as possible. We try to, you know, if people need something to calm them, like a volume type, that’s fine. You know, we try to keep the lights dim, we try to be quiet, we try not to keep coming in out of the room. And during the delivery, it’s not like rah-rah, push-push, it’s very gentle and calm. And the same thing when the babies are born, we just try to keep things quiet, ask you, “Would you like to hold the babies? Would you like to see the babies?” Those types of things, just to keep it as, you know, because your memory is gonna be horrible, right? It’s a horrible event, but for people, you know, yeah, to have a loss.
Simi: So that’s still amazing to think that the memories are not horrible.
Dr. Fox: Right. But it’s a horrible event. But like the loss is horrible, but if during the loss, it’s peaceful. I mean, people have that when someone elderly, when they pass away, there’s a difference between someone dying and something that’s like, violent and aggressive and horrible versus sort of like, they say, it was very peaceful, very tranquil, and the memories of the event aren’t horrible. It’s horrible that someone died. But the event itself actually gives people some peace that had happened in a way that was spiritual, peaceful, they just felt like there wasn’t suffering.
Simi: Yeah, it was spiritual, it was.
Dr. Fox: Yeah, and so it’s sort of the same way with these births. And they’re always, you know, we want the memory to be something of the event, to not be something that evokes horror. What happened is horrible. But the event people should feel like, “You know, I said goodbye in a way that was meaningful, and that wasn’t stressful.” And so we try, but obviously, it’s very different for everybody.
Simi: But I think that also remember that after I gave birth, I was in touch with someone who also lost twins. And she was like, 21 weeks, she was at a doctor who was not very nice. And she ended up delivering the babies alone because no one was in the room. And she was very, very traumatized. And I remember thinking, “I’m lucky that I’m not traumatized.” And then her doctor came in, and he was like, “Okay, I guess you’ll just have to try again next time.” She was like, “What am I? A candy machine? Like, okay, let’s try again?” And I remember she was really, really traumatized. And I was really counting my blessings, that the birth was not traumatizing. It was very sad. It was very emotional. It was sad. But it was now traumatizing, and that’s for sure. Now, so we were really lucky to have then under the care of a really good practice and nice understanding doctors. And I think that makes a world of a difference.
Dr. Fox: Yeah, I mean, the hospitals also, they’re very good at time, they continue to get better. They’re so…like, nurses understand the social workers. And they have an understanding. And this is, unfortunately, this happens. And unfortunately, everyone there has experience with this and sort of has a sense of what’s appropriate, and how to try to handle these things. And so…
Simi: I do remember, actually, two of the nurses who had been at my admitting like a week before, then they found out that I lost the twins and they came to me, they were actually crying. They came over to me afterwards, they came into the room, and they were saying they were so sorry, but I remember being really impressed that they actually came to say they were, you know, like that they really, really felt along with us. They weren’t even assigned to me at that point. Because I was on a different floor.
Dr. Fox: Yeah. Yeah. Listen, they’re very caring people. And obviously, 9 out of 10 or 99 out of 100 times the birth is great, everyone’s happy. It’s a wonderful joy, but it’s not 100% of the time. And so this happens, and it’s painful to the staff also, no one wants to see anyone suffer and go through a loss and it’s horrible. I mean, everyone’s humans, everyone’s people there and so it’s very difficult. Did you choose…you had the babies a burial for them? Did you give them names?
Simi: It was way too painful for us to even think about naming them. We did have the names that we were gonna name them with. But at that point, we were like, “No, we’re not gonna use those.” We had a very good friend that my husband called. And he took care of the burial for us. At that point we were surviving, we were just happy that someone was taking care of it. And he had told us that if we want to, he can choose the names for us. So it was just easier for us at that point, because the whole prospect of connecting to the babies, we didn’t wanna connect in a way we wouldn’t be able to disconnect. So not 100%. I can’t say that we weren’t connected to the babies, but meaning to say that choosing the names and being involved in the whole burial, knowing that we didn’t have to be 100% involved in it made it a little easier for us. Because at that point, we were very, very shattered. It was a hard time for us. It was easier knowing that someone was taking care of it for us. At this point. I’m the one helping people with the burials. Times have changed, I’ve become a little less, I wouldn’t say sensitive. But yeah, it’s sort of like something that I do. And being at one side of the coin, or being at the other side of the coin is just so different.
Dr. Fox: Yeah. And different people feel differently. There are some couples who are, you know, they named the babies they’re…
Simi: Yes. They do have that.
Dr. Fox: Yeah. They list them as part of their families and someone says, “How many children do you have?” And they include the pregnancies that they lost, and other people do not feel comfortable with that. It’s a different way of viewing their family. And, again, it’s not like one is better than the other, one’s right, one’s wrong. It’s what helps people just…
Dr. Fox: Yeah, get through this world with all the bad things that happen to us. And for some, it brings more comfort to keep those babies in their memory and in their family. And for others, it’s the opposite. And it’s a hard decision, and no one’s prepared to make that decision. How could you ever prepare for something like that? What was your recovery like afterwards? I don’t mean physical. I mean, you know, in general, just coming home.
Simi: So I actually went to my parents, even though I live right on top of my parents, going home was way too painful for us. I couldn’t be able to be in the room where I had just been, and I was pregnant. I didn’t wanna go up to my house for at least a week. Like I remember, I wasn’t feeling well, I had to come into the office. And I had to go up to the apartment to get dressed. And I remember just walking in, and going straight to my room with my eyes closed. I didn’t wanna be in the room. It was very, very painful for us. We had started buying stuff, there was a whole bag of baby clothing that had to be returned.
So again, I got myself very, very lucky that we have a very, very supportive parents from both sides, my husband’s side and my parents. They were very, very supportive. And I remember my dad traveled like a half hour away from where we live to go buy my favorite cookies because he really wanted me to eat because I was not eating and not drinking. And I remember them being very scared that I was becoming anorexic. Because I couldn’t eat and I couldn’t drink. Well, and I remember my husband coming by to you guys on Friday. And he bought some stuff and he was mentioning that I wasn’t eating, you guys were like, “No, you don’t have to worry. It’s gonna come back eventually.”
There was a lot of grieving, my sister almost came over, they were sitting with us and my sisters, I remember my sister had one of her sister-in-laws had a baby, she was gonna go to Montreal, and before the birth time, she stayed behind with me. And it was a heavy grieving process. There was a lot of crying involved, just out of the blue, and I couldn’t…I remember not being able to sleep at night. And then I started Googling what the chances are of 23 weeks of surviving. And I started seeing all this controversial stuff. And people were saying, “Yes,” some people were saying, “No.” Some people were saying, “Oh, the babies, you know, I had 23-week twins and they’re doing amazing.” And just the fact that they have, you know, one is blind and the other one has cerebral palsy but they’re perfectly fine. And I remember feeling very confused. I remember feeling not guilty, but sort of like, “Should we have thought about it a little more? Or but then I was like, “No, I mean, having a child that’s blind and another child that has cerebral palsy, we wouldn’t be able to do that.” But I think I remember you telling me at the postpartum visit that, “You’re gonna get over it but you’re never gonna forget it.”
And those are such true words because you never forget them. I mean, you go from thinking about it every minute of the day to only every five minutes of day, then you go to thinking only five times a day, it eventually becomes easier. It’s sort of like, you have a boulder rock on your heart. And then with every passing day, one tiny little stone of the rock falls off, and it just becomes easier and easier, but that rock is always there. We can’t ever forget about them ever. It’s sort of like something that we know it’s part of us, but it’s not so heavy anymore. It doesn’t feel like it hurts. But that takes a lot of time.
Simi: How much time did it take would you say? Did it take like months, years? Until you, again, until you sort of felt okay?
Simi: Okay was when we had our baby.
Dr. Fox: Yeah, I mean, that’s years. I mean, you’re talking years. It’s a long, long time, which is normal. It’s supposed to be a long, long time when you lose something that precious.
Simi: Yeah. So I wouldn’t say that my daughter replaced it. She didn’t. But it definitely gave us something else to think about. And there was life. And suddenly, there was a tangible baby. But I would say the first three months are really, really tough. There was a lot of crying and a lot of being very emotionally drained. And then eventually, it just becomes easier, it becomes less painful. Your heart actually hurts less. It just feels lighter.
Dr. Fox: Yeah, we had a woman on the podcast who had a similar loss. And she said, “It’s not about getting over it or getting passed it, it’s about getting through it.”
Simi: Right, that’s true.
Dr. Fox: It’s just you have to just get through the experience because there’s no choice, you have to get through it. But it’s more than that. Because it’s never really, you know, go on.
Dr. Fox: You just have to go forward through it. In this process afterwards, at what point did you decide, I wanna try again? Was it you wanna try again in like after the three months? Or was it like I need a year or two to recover?
Simi: So for us, it was a little different. Because…
Dr. Fox: Right, you had to start over with IVF.
Simi: …we weren’t even sure we would be able to have more kids. Because our infertility diagnosis was intense. This was our second time we had done a fresh cycle. There were no embryos left. And we weren’t sure we would be able to try again, not because we couldn’t, but because of the diagnosis. So that was also a very intense part of why it was hard. I would say probably like six to eight months later, we started discussing, you know, maybe we should see if we could or we couldn’t. But at the end I think we started like a year later.
Dr. Fox: And you ultimately, I mean, you delivered three years later.
Simi: Right. We had tried.
Dr. Fox: So I guess you started, you took a year.
Simi: Yeah, we had tried before. And we had failed in other IVF cycles until we had my daughter.
Dr. Fox: What was that pregnancy like with your daughter?
Simi: It was surreal
Dr. Fox: So you’re carrying one baby. When you were there and you’re pregnant, obviously, there’s a mixture of terror and joy, right? Was it more joy than terror?
Simi: I wasn’t terrified? No.
Dr. Fox: All right. Because it wasn’t twins?
Simi: No, I was not terrified.
Dr. Fox: Because you’re like, “This isn’t gonna happen again?”
Simi: So I remember asking like you telling us that, “It was probably the twins. And if you become pregnant with twins, again, we’re gonna have to take one out.” And I remember feeling very anxious about it. About the fact that, “What are we gonna do if we do become pregnant? Because I still have a fear of that?”
Dr. Fox: I’m not sure if that’s exactly what I said, but whatever, that’s fine.
Simi: I still have a feeling.
Dr. Fox: That’s your memory of it, that’s okay
Simi: I still remember, every time we try again, it’s like, “Okay, I’m for sure becoming pregnant with twins, and it’s gonna be identical. What are we gonna do?” I remember that it was a discussion of it was probably the twins factor. And I remember feeling a little upset at my body. I remember thinking, “I’m healthy. I work out, I eat healthy. And you walk on the street and you see twins, literally a dime a dozen. Like you know what…
Dr. Fox: Right. It’s luck. It’s not the body. It’s luck. Some twins settle into a uterus nicely and others don’t.
Dr. Fox: And it’s also pregnancy-specific. You could have someone with twins and it’s a disaster and then the next pregnancy have twins and it’s fine. It’s usually not that there’s something wrong with the woman or her uterus. It’s, I mean, there could be situations like that, but that’s the exception. It’s usually luck. I mean, why do people lose one baby, right? It doesn’t mean there’s something wrong, right? It doesn’t mean there’s something wrong with them. I mean, it’s like it happens and it’s horrible. But it’s usually bad luck. Occasionally we find things that need to be corrected or this or that, but that’s really the expectation.
Simi: But being that my cervix was fine. My cervix was fine.
Dr. Fox: Yeah. Why would someone’s water break? It’s like it’s almost random, in a sense, and I mean, it sucks. It happens it’s horrible, but it’s literally like almost random in this situation,
Simi: Probably until I was like 23. I kept on thinking, “Okay, let me just be past 23 weeks.” And then when I was past 23, it was I was like, “You’re so stupid. Why do you wanna be past 23 weeks? You wanna be past 30 minimum?” But I was…
Dr. Fox: Like moving the goalpost. Okay.
Simi: But I was not anxious. I was running every single day. I did exercise. I could say…
Dr. Fox: Yeah. I remember you were pretty good, I mean, emotionally.
Simi: I was very, yeah.
Dr. Fox: Which was a surprise.
Simi: I was in a good place.
Dr. Fox: Most people are a wreck. And you weren’t a wreck. And, God knows it’s fantastic. And ultimately…
Simi: No, it was a textbook pregnancy.
Dr. Fox: Textbook. And then ultimately, you delivered. It was January, right?
Dr. Fox: Thirty-seven plus weeks.
Simi: Yeah. I remember being shocked when my water broke, because I was like, “Oh, I’m gonna have my baby overdue because that’s just, you know, I had my babies at 23 weeks last time, I’m definitely being overdue.” So when my water broke at 37 weeks, I was like, “What? No, I’m not ready. I wasn’t packed.” It was out of the blue. But it was an amazing surprise. And then in hindsight, 37 weeks is perfect. She was six, six, which was beautiful. She was a beautiful baby. And I remember holding her and they were taking me up to the room. I was in the wheelchair and the nurse was taking me out. And I could not stop crying because I remember that the last time I was being pushed in a hospital my hands were empty. And I was crying and she looks at me and she’s like, “Are you okay? Like, are you happy that your baby was born? Like, is everything okay?” And I was like, “Yeah, I’m very okay. Just very, very emotional.”
Dr. Fox: That must have been so surreal.
Simi: It was. It was such a blur. Like when I think of those two days when I was in the hospital, I was so tired and I was so exhausted, and we were drunk on emotions. I couldn’t believe that I was holding her. And I remember keeping on thinking like, “I hope nothing is gonna happen to her.” Like you start getting ahead of yourself. And you start thinking, “Oh, but there’s so many other things that can still happen like SIDS. And I don’t know.” And I was like, “I don’t want our happy ending to stop.” Because the baby starts crying at night and she doesn’t stop, you forget about thinking about SIDS. And you start thinking, “Is there a fire station somewhere here because she is not stopping to cry?” But in the beginning, I remember being really happy that she was crying all night because I didn’t mind it. But then…
Dr. Fox: Yeah, that changes.
Dr. Fox: She’s six now right?
Simi: She’s six. She’s the funniest, funniest kid ever. She keeps asking us when we’re gonna have another baby? And it’s funny that she starts noticing and she starts saying, but like one of my sister’s just had a baby and she was like, “But her baby is still so tiny. Like, how did she have another baby?” But she’s really good. She’s really good about it. And she knows that. And when the time is gonna come, we’re gonna have. We never told her about the twins yet.
Dr. Fox: I assume you plan to at some point?
Simi: We will. I mean, we have pictures of the baby.
Dr. Fox: Plus when she gets an iPhone, she’ll hear this podcast.
Dr. Fox: Yeah. So it’s got to be before you give her a phone. She’ll Google you, she’ll find you.
Simi: We do plan on telling her. But I think she’s still very young….
Dr. Fox: Yeah, it’s hard to process that.
Simi: She’s still six and I don’t think she’s emotionally ready to hear. And I didn’t want her to live…. We didn’t want her to live in the shadow of the babies that, you know, she’s, I wouldn’t say replacing. But…
Dr. Fox: Yeah, I understand. Do you tell in your line of work? Because you work with women with pregnancy loss and fertility issues. Do you tell them your story? Is that part of it? Or do you leave it out? I mean, how often does it come up?
Simi: Normally, I don’t really self-disclose, unless it is someone that I was specifically assigned to, meaning to say that she’s going through a hard time or whatever. Or in specific situations where I will connect with the patient in a different way, or because she’s going through the same thing and whatever, then I will talk about it. And I will discuss it with them. But I find that every person, as you say, accepts things differently. And everyone has their own way of overcoming things. So, let’s say even when I discuss it with my friends, like sometimes they’ll be so surprised that there’s this option that you can choose to say or not resuscitating or how we came to the decision or why we’ve come to the decision that we will do that.
Once you’re in this situation, it’s a little different. But then again, also, people who are in the same situation as me, they will have different views and they will have different ways of coping. And sometimes I speak to people, one, they know they’re pregnant with a baby that’s sick and it’s not gonna survive and they don’t care. They wanna go through the entire pregnancy and they wanna feel the feelings or even very often we have this where we know that we’re helping the couple that’s pregnant with the baby that’s not gonna survive.
And the question of whether or not they should do termination, or whether or not they should do a DNC and do a birth, it’s a very hard decision for people to make. I usually do try to guide them according to how I feel that they look. Or the feelings that they’re giving me that…
Dr. Fox: Were there. Right
Simi: Right. Yeah, like if someone is highly emotional, and I know that a birth is really gonna disturb her or it’s gonna make it harder, then I will help them. I don’t ever push anyone to make decisions. I just help them decide. And I tell them, “There’s the cons of this. And there’s the pros of that. And what do you think? Do you think that you’ll be able to withstand a labor and delivery of a baby that you will not be able to…that the babies will die or the baby will die? And will you be able to disconnect? Will you able to? And also about holding the baby?” And there’s so many decisions that people have to make in such a situation. It’s tough.
Dr. Fox: Did your experience of what happened, is that what led you to work with ATime?
Dr. Fox: That was sort of the push for you? How did that happen?
Simi: So it was very funny. So after I gave birth, I was like, “I’m not going back to that job. I can’t handle it.” I was happy.
Dr. Fox: The narcissist’s job. Yeah.
Simi: Yeah, I was happy that I wouldn’t have to go back. I wasn’t gonna go back there, even though he really wanted me to come back. And he kept calling. And I was like, “No, I’m not going back.” So then I didn’t work for a couple of months. And then my husband opened up a business and I started working for him. And I was helping him and then I was like, “Okay, I’m hiring you a secretary, and I am getting out of here.” And then I remember having an event. And one of them came over to me and she was like, “Simi, do you wanna work for us?” And I remember thinking, “Yeah, I do wanna work for you. I think that would be amazing. But I don’t have the experience.” And so in hindsight, I didn’t have a lot of experience in infertility based on our diagnosis and our pregnancy also. I wasn’t sure what the job would entail and whatever. But I was like, “Yeah, I’m ready to work for you guys.”
Dr. Fox: Does your experience color sort of how you advise people, not in terms of what they should do, but for example, like, I know, you talked about people with twins, you were like, “Go to high-risk practice.” Is it because of what happened to you in that sense?
Simi: Absolutely. Yes. Yes, yes.
Dr. Fox: I figured that might be the case, you tend to be a little more aggressive. Hey, we appreciate that. But…
Simi: But you know what, I just heard a story of someone who had triplets and was not using a high-risk practice. And the person who was telling me the story, she was going through a pregnancy where I told her to go to you guys. And the end of her pregnancy ended up not being that high risk. But she was happy that she was with you guys. And she was like, she didn’t use a high-risk doctor. And I was like, “You know what…?
Dr. Fox: Not for everyone. All right. What made you decide to come in today to tell your story? I’m curious, because you volunteered, you said, “Let’s do it.”
Simi: I think that hearing other people’s stories sometimes will help people make decisions. It will also make people feel that they’re not alone. Because I remember feeling very alone at that point. I didn’t think they were more people that…I didn’t think I was the only one in the world that was going through that. But the more I read, the more I saw that people were having this situation, but I want people to know that they’re not alone, and that there’s help out there. And something like this will not always break you. It can sometimes really make a person stronger. I definitely think that both me and my husband and as a couple, we did become stronger. And definitely it did not break us. It only made us be better people and more understanding. And we now have experience in something that made us become the people that we are today.
Dr. Fox: Simi, thank you so much for coming in and coming on the podcast to tell your story. It’s a very difficult story, but it’s a very powerful one and important one. Obviously, I was a part of it. I recall it in that sense, but it’s clearly different coming from you, and how much it impacted you in your life and how it led you to do all the amazing things you’re doing today also. And helping so many people who may be going through the same, or similar, or a different experience but also difficult. And how important what you’re doing now is and how this is all a part of you, that story made you who you are today in that sense.
Simi: Yes. Yes, it did.
Dr. Fox: Thank you for listening to “High Risk Birth Stories,” brought to you by the creators of the “Healthful Woman” podcast. If you’re interested in telling your birth story on our podcast, please go to our partner website at www.healthfulwoman.com and click the link for sharing your story. You can also email us directly at firstname.lastname@example.org. If you liked today’s podcast, please be sure to check out our “Healthful Woman” podcast as well, where I speak with leaders in the field to help you learn more about women’s health, pregnancy, and wellness. Have a great day.
The information discussed in “High Risk Birth Stories” is intended for informational and entertainment only and does not replace medical care from your physician. The stories and experiences discussed in our podcasts are unique to each guest and are not intended to be representative of any standard of care or expected outcomes. As always, we encourage you to speak with your own doctor about specific diagnoses and treatment options for an effective treatment plan. Guests in “High Risk Birth Stories” have given their permission for us to share their personal health information.