Episode 47 SN: A Dilemma of What to Do with Frozen Embryos: Nicole’s story

If, in your attempts to start a family, you run into trouble getting pregnant you quickly learn about a thousand elements involved in the process of getting pregnant: hCG and estrogen and the uterine lining and if you are making use of IVF technology to get pregnant, a whole other set of elements enter the equation: the quality of eggs and sperm and if you are lucky embryos, and then, again, if you are lucky, the quality of the embryo after a few days of cell division, the blastocyst…and the list goes on and on. What today’s guest contends with, which I’m guessing is a common issue for most people who use IVF, is the question of what to do with the remaining frozen embryos. The power of their potential keeps her and her husband uncertain about their appropriate fate. 

You can find Nicole’s piece about this experience, Very Nice Blastocysts, here

Audio Transcript

Paulette: Hi Welcome to War Stories from the Womb. I’m your host Paulette Kamenecka. I’m an economist and a writer and the mother of two girls.

If, in your attempts to start a family, you run into trouble getting pregnant you quickly learn about a thousand elements involved in the process of getting pregnant: hCG and estrogen and the uterine lining and if you are making use of IVF technology to get pregnant, a whole other set of elements enter the equation: the quality of eggs and sperm and if you are lucky embryos, and then, again, if you are lucky, the quality of the embryo after a few days of cell division, the blastocyst…and the list goes on and on. What today’s guest contends with, which I’m guessing is a common issue for most people who use IVF, is the question of what to do with the remaining frozen embryos. The power of their potential keeps her and her husband uncertain about their appropriate fate.  

After we spoke I interviewed a reproductive endocrinologist from Yale, who also happens to have used IVF technology for her own pregnancy.  Although this is a very personal decision, She has some insight into the process and the difficult question of what to do with frozen embryos.

Let’s get to this story.

P:  Hi, thanks so much for coming on the show. Can you introduce yourself and tell us where you’re from? 

 

Nicole: Yeah, I’m Nicole graves Lipson, and I live right outside of Boston in Brookline, Massachusetts. 

 

P: Nice. Lovely. So sometimes in thinking about the families we create, it’s useful to think about the families we’ve come from. So Nicole, do you have any siblings? 

 

N: I do I have one brother. Yeah. 

 

P: And growing up to do you think I’m definitely having a family or I want to recreate this or

 

N: I always knew that I wanted to have a family and have children. I don’t think it was in a intense active way. But when I envisioned my future, family and children were always in it. 

 

P: Okay. Let’s get to the family then. Do you have two kids? 

 

N: I have Three, 

 

P: three kids. Okay. Yes. So was it easy to get pregnant? 

 

N: It was not at all easy to get pregnant. My husband and I were married for six years before we had our first child. I had assumed as I think a lot of women assume but it would once we decided to have a child that would be in a year, year and a half. or so before we would get pregnant at the most. And that did not pan out. And so we pretty quickly realized that we needed to turn to fertility treatments and assisted reproduction to help us out with our first 

 

P: so let me ask you about that before we get into that even more. We needed help as well. And I found that kind of shocking and awkward. And you know, once you invite more people into the process of creating a baby, it’s just it’s just not what we were kind of fed growing up. Right. That’s not your image of baby making. Were you equally kind of taken aback by that or did you just you thought this is Thank God this is here. 

 

N: I was taken aback by it. I think I think what was hard for me about it wasn’t so much that there was a stigma around it or anything like this. It was the feeling that for so many things in my life as a kind of driven, ambitious person. I’ve been able to control outcomes. If I worked hard enough, if I focused I could make a lot of the things that I wanted to happen happen. And it was hard for me to come to terms with the fact that there was nothing that my brain could do to help my husband and I create a baby. 

 

P: Oh, totally. And we briefly talked before we started taping about uncertainty. I have the exact same mindset and I thought well, I will just work super hard to make it happen. Yeah, that’s how it works. Right? Although I have come to reflect on that idea as naive. And maybe my sense of my control over all those things was less complete than I thought it was in the moment. 

 

N: Yeah, I think it’s really hard. To let go of that tendency. 

 

P: Yeah, 

 

N: I would still think about it all the time while I was going through the process, not only because there are elements of it that just make it very consuming, whether it’s yourself medications, or things like this, but I think I still had that feeling of if I put brainpower to this you know, if I think about it enough, you know, if I read enough online forums, you know if I know enough about this, if I do the process well enough meaning, you know if I give myself that injection, not at the no one at night or similar 659 But exactly at seven o’clock so I think it is really hard to give give up that control. Another that you’re doing in assisted reproduction. You are you are handing over control of this process to to medicine 

 

P: to someone else, right. You’re giving me a flashback of our I remember myself in a room practicing the injections on an orange did you have to do that? 

 

N: Oh, sounds actually familiar. And now that you know, you say it, I might have done that as well. A universal thing? 

 

P: Yeah, yeah. Okay, so So you realize you need help and what does that look like and how does that go? 

 

N: Doing some research and finding out you know, different well regarded fertility clinics here in my area that are many in the Boston area? 

 

P: Yeah. 

 

N: And so we were lucky in that regard, and then having a consultation with a couple people and going with the doctor who we felt comfortable with and and who we felt we would have a good shot with. 

 

P: you Did IVF right?

 

N:  Wasn’t that your before our first child? We did IUI. We did three rounds of uterine insemination and the third was successful. That’s it. 

 

P: That’s what I did you and that’s pretty gentle in terms of art, right? I imagined that I’d walk in there and they’d have like a turkey baster. Which is how they’re filling you with with the materials of life. 

 

N: Yeah. I think the hardest part of that experience for me was that on one of the inseminations there was like a good teaching hospital that I did. There were like, six residents in the room. Like one of them actually did the procedure and I was like, I’m not so sure about this. There you go again, with right like handing over control. 

 

P: Yes and uncertainty. For sure. I’ve definitely been in the teaching hospital setting where I’ve thought I mean, I should just sell tickets. I feel like I’m getting used here. So the first one is a success and how is that pregnancy 

 

N: that pregnancy we might end up working? We might end up going off on a tangent here at that pregnancy, with the exception of nausea. I was nauseous at the beginning of all of my pregnancies was wonderful until week. 28. I want to say when I went in for a routine ultrasound, and it was determined that my cervix was shortening which you might know means often that you’re near labor, put on immediate bedrest, so as I’m bedrest for you know, modified bed rest at home for many weeks until I got to be in my you know, 30 Something pregnant and 36 weeks pregnant or something like this and nothing had changed in my cervix and my my OB was like, this just must be your body’s physiology. And so I ended up being induced at 40 weeks after all of that. Oh, I think you’ve got you’ve talked about the rest of the show. I mean, that’s a whole other. 

 

P: It’s useful to know it’s so widespread.

 

N: It’s so widespread. I mean, I wrote about this in one of my other pieces, actually, I think that the turning to that as an option. is not something that would happen if men gave birth. I was the head of the English department at my school and I, one day I was the head of the department the next day, I was on my couch and you know, like 

 

P; crazy. 

 

N: Yeah, there’s a lot there. Like the assumption is is that somebody else is managing the finances somebody else is able to provide if there’s other children, you know, it’s yeah, there’s a lot a lot. 

 

P: that’s crazy. So you bed rest for a while and then how’s the delivery? 

 

N: That was all great. I agreed. 

 

P: Okay, good. So then how long between the first and the second? So I started to try to get pregnant again. I’m born with a second child like two years apart. That was our ideal. So I started to try to get pregnant in probably when my my first child was like 18 months or so. And, you know, I think we tried naturally for a while and but we didn’t want that to go on too long. And then we sort of marched through the different levels of intervention, right? So first, we did Clomid, and then we did IUI and eventually our fertility doctors suggested it was probably time to move on to IVF for this one. So that is what we did. Yeah.

 

P: and IVF is an entire project as I understand it. 

 

N: Yeah, at the beginning, it’s quite like IUI what you went through where you are injecting yourself with a follicle stimulating hormone over a series of weeks and then so you have to go into the clinic for regular ultrasounds to measure the size of the follicles, the egg follicles and how they’re growing and get regular blood tests to measure your estradiol levels. And so it is involved in the sense that you are making regular visits to your clinic or hospital for these interventions. 

 

And then it’s just obviously a lot of mental, a lot of mental energy. A lot is hinging during those weeks on, you know, the the call you get from the nurse at the clinic in the afternoon telling you how the follicles are growing or how many there are. I think the thing about the IVF process or or or really any intervention, fertility intervention I think is how it takes up so much space in your brain when you are going through it. I think that’s, to me that was harder than the actual injection of the shots or, or all of this it was how the sort of fixation on how things were going, how things were going to turn out sort of eclipsed the other things going on in my life at that time. That was hard.

 

P: Well, you are given a window into how intricate and complicated this process actually is. Because if you don’t get pregnant just by having sex one night then then that process is broken down into 45 separate steps where now you have all these other things to focus on and will the cells divide and what will they look like and you are being forced to examine and focus on all these details that you otherwise took for granted? What does not agree it seems understandable if that’s how it would go I remember waiting for the call. And when I was waiting for the call, I guess it was on like the edge of cell phones. So not everyone had a cell phone so you had to be home. 

 

N: Right? 

 

P: impossible to imagine. Now I can totally relate to how hard each and every step is, especially as we talked about with your interest in controlling things that you’ve previously controlled in. Your life and now it’s in someone else’s hands and I’m not sure about you, but I felt really responsible for all my numbers. Like all these numbers are being produced by my body even though I can’t do anything to change the FSH control 

 

N: that really resonates with me what you just said and I think there’s so much about fertility and childbirth and motherhood, especially early motherhood. For me there were so many things about it that made me feel for the first time that my body’s involuntary functionings were reflection of one moral character in some way like you know whether or not you can produce a baby easily whether or not you can breastfeed, right? No woman has any choice over whether or not breastfeeding comes easily for her or not. And yet in our culture, there seems to be such like a value just to health value placed on breastfeeding your infant but almost a moral value right and so it becomes this like morally laden thing. Can my breast produce breast milk for my child can I can I create a wonderful latch you know, between my child and me, these involuntary functionings that we don’t think about otherwise suddenly carry this moral ethical weight. 

 

P; yeah, those feelings are totally familiar, but it sounds like in this case the IVF works. 

 

N: the IVF works. Yes. And the first the first round of IVF work so we were very lucky in that regard. Yeah. 

 

P: And then the leash gets longer after the first trimester because now you’re freed from the fertility people. 

 

N: Yeah, absolutely freed from the fertility people. And just regular pregnant woman at this point. Yeah. 

 

P: how does that pregnancy go. 

 

N: Hey, I really loved being pregnant. I loved being pregnant. All three times that I eventually ended up pregnant. 

 

P: I’m glad that went smoothly. I read a piece that you wrote. It’s called 

 

N: very nice blastocyst, 

 

P: a very nice, very nice blastocyst. Is that with reference to the third pregnancy? Or where’s that in the lineup? 

 

N: That’s reference to the second pregnancy. 

 

P: Okay. So let’s talk about that because that was a beautiful piece that you wrote, In case and in it, you’re sort of contemplating what to do with the other embryos, right? 

 

N: Right. So what happened in that IVF cycle? 

 

P: To give a little background on a typical IVF cycle, I got in touch with a reproductive endocrinologist today, we are lucky enough to have Dr. Tanya Glenn a reproductive endocrinologist from Yale on you have a clinical practice and you’re an instructor at Yale as well. Is that right?

 

Dr. Glenn: clinical instructor The third year fellow, so I’m still in training, and we’ll be graduating in about four months.

 

P: Oh, exciting. Congratulations. Thank you. Thanks so much for coming on the show. Can you give us a quick walk through what the process is? Just so people who have you know exactly what’s happening

 

Dr. Glenn: so to IVF is when patients will take their medication determines what that means is there are natural hormones where your brain tells your ovaries each month and a patient that’s having regular monthly cycles to grow an egg, and usually our bodies when they can, okay. And in this case, we take over that brain to ovary signal by giving them hormones that they take through an injection. And this instead of just saying grow one egg, I’m telling the body girl lots of eggs. And then when they get enough large eggs, we call them follicles at that point because eggs are microscopic so I can’t see eggs themselves by say I see the home that they live in. And as the egg gets more mature, the home gets bigger. And so once that follicle gets to a certain size, we give them what we call a trigger shot. This kind of mimics our body’s natural hormone rush that causes the body to ovulate or release the egg then approximately 36 hours later, we do a procedure called an egg retrieval that includes a transvaginal ultrasound with a little needle in the end, or we actually go into the ovary and suck out the follicles or the eggs under ultrasound guidance. We would then give those eggs to the embryology lab. And let’s say someone is has a male partner or using donor sperm. And in that case, we would expose the eggs to the sperm. And then you know, watch them fertilize in the lab and then usually grow them to day five, sometimes day three if they’re lesser quality. At that point at day five, they’re called a blastocyst and a blastocyst can either be transferred back to a patient she desires to get pregnant in that cycle, or we freeze everything? And especially with patients who have let’s say a couple like they don’t just have one embryo they have five or six that say they want one place back but now with these other five, they’re going to freeze them. It’s called process called vitrification, which is Latin for making glass and they can transfer them in another cycle. And the purpose of that too, is that we know even for patients with you know less than 35 so peak fertility is actually in the mid 20s. But we can really see it go down at 35. And so even patients younger than 35, we only see about a 55% chance for live birth each time that you place an embryo back, so it’s not 100%. So it’s nice to have those I say something reserved in the bank. And so we know that the live birth rate after about three embryo transfers one each time is about 90%

 

N: I think I had 14 eggs that were extracted at the end of that cycle, maybe five or six fertilized normally and the doctors picked the very best two and this is interesting. I learned that embryos are graded like diamonds, it’s a similar grading system that diamonds have like clarity color. There’s a very similar grading system for embryos and so I from us process we had two beautiful sparkling high quality diamond embryos and so two of those were been implanted in my uterus and and that’s determined based on your your age and an algorithm you know, how old are you? How likely are you to have multiple babies? I would have welcomed twins if that had happened but it did not only one of the embryos implanted and that embryo turned into my son, who is now eight. 

 

P: That’s sort of amazing and you’re talking about feeling judged based on what your body does and but you’re literally your eggs are being judged. They’re like, 

 

N: Oh, I’m proud of my diamond embryos. Like it’s like my husband and I produce these diamonds. Absolutely. Like you’re sitting there I remember sitting on the on the hospital table with like the paper sheet over me being shown this photograph of the two embryos and Doctor explaining to me what made them so perfect. And you know, I was just I had, like my first glimmer of maternal pride in these little creatures that might become a child of mine. So, yes, and and then what they do is they they continue to let the remaining embryos that are in that petri dish, their cells continue to multiply and they watch them and the ones that continue to live on which means that they are in the strongest condition have the best hope of you know ever developing further they freeze and so after our IVF cycle, we had three frozen embryos left over should we ever want to use. 

 

P: So that becomes a little bit of a tricky question, right? What do you do with the embryos which I feels like it’s weighty? 

 

N: Yeah, so that’s the question that I explore in my essay, very nice blastocyst. Anyone who has had a child knows how all consuming it is to have an infant. And so you know, for for the first few months to a year of my son’s life. I’m breastfeeding I you know, I have his older sister at that point is a toddler age three. And so I’m a busy lady, with a lot going on, and not something I ever really thought about, you know, the embryos at that point. They were, you know, the IVF wasn’t that far behind us. You know, there wasn’t any question because my baby was so young that I was going to have another child anytime soon. Nor did my husband and I know if we wanted to have another child that was not something that we had planned for or discussed. We very much knew that. We wanted two children and not one we were very hopeful that we could have a second child after our first but beyond that, and never more children had never been a big factor in our thinking our planning we’d never gotten further mentally than into 

 

P: Yeah, and I can see because I also did not get pregnant easily. I know the drive and the focus, to make the babies and have it work. And that kind of overrides everything. So you don’t necessarily think about what’s going to happen to those embryos. You know, you’re so excited that you get pregnant when you’re when you get the call and you are pregnant and it’s going to work and you’re so focused on that. And so seemed like in your essay, you were saying that issue of these frozen embryos occupied a space in the back of your mind pretty continuously and sort of what to do with them. 

 

N: Right. So again, the saying earlier, the fixation on successful that getting a baby is so strong and so overwhelming. That I think it it pushes your brain away or pushed my brain away. I can say from thinking about other things, anything tangential and a future fallout from this experience. I wasn’t thinking about oh you know, is this going to be harmful to my ovaries in the long run to be stimulating them this way? Because I didn’t care. I just wanted this baby. You know, I didn’t care if you know there was heightened risk for ovarian cancer. I wanted this baby. 

 

P: people who use assisted system in production are pretty focused on getting pregnant. History really do we know if there are any long term consequences?

 

Dr Glenn: That’s a great question. I think that overall there has been some information looking at specific or mentally responsive cancers like breast cancer and IVF and one paper I know that I reviewed recently looked at maybe if there is a slight increase it was a Danish conference study that there might be a slight increased risk of breast cancer within the short amount of follow up time. However, when you looked at the risk, it was point 9% of the population versus 1.1% of the population. If there wasn’t a difference. It was incremental. I always have a caveat as well as that this is looking at a very homogenous population. It was a Danish cohort, how much does it apply to our own patients? And so there has been a certain studies looking at that if you look at something like egg donors, you know, we limit it to six cycles and so and it was actually not for the potential for increased risk for cancer, because looking at the increase of cumulative risk of doing something like stimulating your ovaries and going for an egg retrieval. So overall, it’s a risk for any kind of complications from an egg retrieval day. infection, bleeding damage to certain structures like your bowel and bladder is like less than point 1%. However, when you look at someone doing repetitive cycles over time that increases and so we just want to make sure we protect everyone. But overall it is it is a safe procedure. They take the each individual and say what are their risks and benefits knowing their history?

 

N: The same way did I know that there was a likelihood that my IVF cycle would result in frozen embryos? Yes, my husband and I were given among all the many piles of paperwork you have to sign when you when you do IVF there’s a form we had to sign even before embarking on IVF about storing frozen embryos because the clinic would store those in their own facility for up to three years. But beyond that, if you didn’t want them to be destroyed at that point, they would need to transfer them to an outside cryogenic facility. So all of this required paper work in advance and the clue to the fact that I just wasn’t giving them this topic. The brainspace that I probably should have before I embarked on IVF is that those papers I found those papers unsigned and unreturned after the IVF cycles, so there was something about those papers. You know, I remember reading them and thinking this is crazy. How can I be signing papers about genetic material that doesn’t exist that might not ever exist? Decisions for possible future genetic material and where I’m going to store it and it just seemed, it’s it was daunting paperwork and there was something almost like speculative about it. It just it was I didn’t want to look at it. I didn’t want to face it. I didn’t want to think about it. And I didn’t. 

 

P: Yeah, I mean, it almost seems overconfident to be like, where are you going to stash this haul? Like I don’t have anything yet. Right? 

 

N: Exactly. Like are you kidding me? I just want to have a baby. I don’t want to think about this doesn’t this doesn’t relate to me. And so obviously wasn’t a deliberate omission not to sign the papers, but I did find them unsigned later in my folder of IVF records. 

 

P: So one thing I wondered when I read your essay, because I don’t think you mentioned it to have this issue weigh on you. Do you have to think that those embryos are a life is that what is holding you up because I I’m not sure if I think of them as a life or not in the context of the abortion debate. Which is so polarizing and kind of flattens the arguments that can be made. I would say this is not a life… solely my opinion, and because I had so much trouble getting pregnant and with the pregnancies, the intricacy of all the things that have to happen. To turn that tiny ball of cells into a person gives me distance from them. 

 

N: Yeah, but I wonder what your feelings are about all that. I mean, maybe I’ll talk about the essay to get it that what was so interesting to me about going through this process, I’ll backtrack and I’ll just explain the predicament. I found myself. So after our son, you know was when he’s around two or so, you know, my husband and I did start to discuss are we done having babies, you know, do we want to have another baby and we weren’t sure. But the fact that we had these embryos felt like a strong nudge towards having another child I felt if we were on the fence for various reasons that it was that factor that tipped me over into wanting a third child. So we actually disagree with it. 

 

P: Let me stop you there. For a second is it that you went through this difficult procedure to get the embryos and so and so you should use them or it’s that these embryos represent a life and we should realize its potential? 

 

N: So little bit something in the in the middle, I think, 

 

P: Okay,

 

N: I think if we were just deciding whether to have a third child without factors, the embryos being involved, it would be a decision that had no if we decided not to have a third child. That decision would have no impact on anyone whatsoever. Only us right. But the fact that there were these embryos suddenly meant that that decision carried a lot more weight than it otherwise would have. We would actively have to do something not to have a third child. We would actively have to make the decision to destroy these embryos to not use them. Right and I do not think that embryos are life. Do think of them and this is where as a mother the issue became complicated for me. Our potential 

 

P: Yeah, agreed

 

N: they are read intial life. And so there is something very hard about letting go of potential. And I think especially if you’re a parent trained, you know to to love potential to look for potential to want to nurture potential. And so that was the meaning that these embryos started to take on for me and since we were on the fence about having a third child, I said I’ve got that nudged us towards yes having one. But then something happened to make things complicated, which is that once they got the process, going reconnected with our clinic, made an appointment for a baseline ultrasound, which is when they look at a do an ultrasound of your uterus to just see where it stands and what would need to be on what hormones would need to I would need to take to prepare the lining of my uterus for the implantation of one of those embryos.  once we’ve made all of those moves I got pregnant naturally.

 

P: of course you did…that’s how it works

 

N: which itself was a very wild experience after having worked very, very, very, very hard for my other two pregnancies to simply have a late period, have that moment of wondering, going buy the CVS and now on my way home from work, pee on the stick and be pregnant was like, writing my essay that it was as if all of a sudden somebody told me that my fingers could spin gold like that my body could do this was totally shocking and disorienting and wonderful.

 

P: especially when you see behind the curtain right now you understand the thing. Everything is amazing.

 

N: Absolutely. So that was wonderful and and that pregnancy went well and resulted in our in our daughter, but it did leave us then with this again, but the question of these embryos,

 

P: but I’m imagining it’s a slightly different question. Now that you have three kids right. Then you have to take into consideration the other three, right it’s

 

N: it was a pretty much out of the question. We were not going to have a fourth child for for many reasons. It’s just not feasible for our family. It was not something that we thought would be best for our family and so that left us with these embryos. And what my essay explores is sort of my shifting orientation to these embryos over the years because the truth is, I could not bring myself to make the call to our clinic to have them destroyed. And so their existence is something that I ignored that I I sort of willfully ignored for a long time. And you know, there would be moments when you know, I would think to myself, I can’t believe that I call myself a full grown adult when I am not taking responsibility for these embryos and making the choice to to have them destroy because I’m a writer, but it’s not hard to imagine like some of the like Apocalypse apocalyptic visions of like embryos out there in the world. And basically, I’d ceded all responsibility for our genetic material or potential, our potential but this potential that we’re responsible for to total strangers in a lab somewhere a couple miles from our house, but it’s a because it is so hidden and because these embryos are frozen in the they are unseen, right is what it is. They’re not a reality that you need to confront every day, right? You need to confront the reality of your children every day. You know, you need to prepare the meals you need to deal with whatever struggles and hardships come their way you need to attend to them but the embryos it’s very easy not to and truthfully way that I’ve since learned because I don’t know a whole lot about this at all, but the way that fertility clinics, deal with them. Also makes them sort of quite easy to ignore, because clinics are not particularly this. I shouldn’t speak for all clinics. I can speak for ours but my understanding is that this is pretty universal. They are not aggressive about getting their patients to make decisions about what to do with the embryos. I knew that that they were still at our original clinic I had never signed any papers authorizing them to be transferred anywhere. I you know, did wonder on occasion if they had been destroyed without my knowledge since they had been there longer than the three years. I did, you know, one day email our clinic because you know, and I write this and they they essay it wasn’t because I had some sort of resolve or I had come up with some sort of decision about them but I just I wanted to know if they were still actually around. Or if they had been destroyed. You know, there was a very lovely receptionist on the phone in the lab who basically was like, oh, no, they’re here if you want to transfer them. You just have to sign this paperwork. 

 

And there was nothing urgent about it, you know, whatsoever. And so it’s one of those like decisions that indecision that ends up happening because there’s no particular moment where anyone is putting a paper in front of you saying like this has to get done or else my relationship with these embryos began to take on almost strange, magical tenor and what I mean by that is no at first I sort of thought of them as a as Life rafts. I’m going to knock wood as I say this, but like God forbid should anything ever happen to our children there. There would be despair, there would be anguish, but there would be these embryos right so we could rebuild a biological family if tragedy befell ours. And then that over the years began to dissipate a little because you know my husband and I are getting older and as we got further and further from the baby stage, my my my youngest is now six returning to the baby stage seems it almost is harder and harder. Right? Like we are

 

P: totally understand what you’re saying by this kind of insurance policy. At the same time, my guess is I don’t know whether you’d be able to bridge that loss.

 

N: Yeah. t’s magical thinking and then it became more magical because it sort of more from like, well, these are sort of like an insurance policy to almost like superstition. If I destroy these embryos, something terrible is going to happen to my family. So there’s all of this kind of magical thinking bound up in them. You know, it’s just such an interesting juxtaposition when you think about like the rigid science that actually that actually created these embryos and then the the meanings that they that they take on and you know, during the IVF process, you know, as I said, I was fixated on the process resulting in a baby but the sort of thinking that I can do about these embryos now without that kind of urgent desire mixed in is I think about generations that came before my husband and me and our families. I think about all of the history in in that DNA, right? I think about I’ve read about in the essay, you know, my ancestors who my ancestors on my father’s side who escaped pogroms in Eastern Europe and you know, went through all sorts of turmoil to make it to the United States, right, and then lived in tenements Lower East Side and, you know, thinking about my grandmother and all of the fate and escapes that needed to take place for those embryos that are frozen to exist. And so all of these sort of meanings started to accrue and attach themselves to these embryos over the years. In a way that I never ever could have seen.

 

P: Once you start thinking about it as a family line, then there’s no way to extricate yourself from those from those embryos, right? You really only have like four choices, have them yourself, which you’re not going to do destroy them. Give them the science for experimentation, or give them to someone else to have that baby giving the embryos to someone else as a form of adoption. I interviewed a woman I think in episode five or six, who did just that she and her husband went through IVF had twins and decided they didn’t want to have more children. And they found families who wanted kids but for whom IVF was prohibitively expensive, and they donated them.

 

N: I mean, I think that that is incredible. I admire this woman. 

 

P: Yeah, totally.

 

N:  I understand. I see the beauty in that. Gesture. I myself personally could not do that. It would feel and this is where that word line the web in life and non life comes in. it would feel to me like giving away my living children in a way to be raised by total strangers. Obviously not quite so extreme. I have a relationship with my living children, but not so far from the same. 

 

P: Yeah, 

 

N: I don’t know what kind of parents these people would be. I don’t know what kind of circumstances you know, they would would put my child and so that didn’t feel comfortable to me. The science research part didn’t feel comfortable because you know, I think I read in my case like science for whose purpose you know, you don’t have any say in what we’re what purpose is, are. Are these embryos being used. And so that vagueness was a discomfort to me. And so I can’t say that I was or am proud of my feelings about these things.

 

P: Well, they, they just are right, they just

 

N: they just are. I often wish you know that I could think of these embryos. As you know, like biopsy tissue or something right, like disposable, you know, useful for scientific purposes. And I think there are people who who can who do think of them way

 

P: this is obviously a really fraught issue and that I brought to Dr. Glenn so Nicole and her partner can’t be alone in this quandary about what to do with frozen embryos. Does your clinic offer counseling or what do we tell people? 

 

Dr. Glenn: You know, I don’t think specific kills like that for our clinics for this topic, but it’s something that I talk to patients about during their IVF and then before they sign it is like, you know, these are the different parts you need me to discuss or you know, you alone, you determine that. And so they have questions, of course, as part of the conversation about like, next step. So when you do it, to be honest, we have less patients that kind of go forward on this part. And I think, kind of like you said, the initial part is I just want to know what to do next, and I just need to keep going. I think that most patients don’t think about that until later on

 

 And unfortunately, I think that this is a personal struggle that they sometimes don’t reach out for, they don’t look at as your decision is such a personal decision. So they talk to their friends, family. Or they talk to other people who have gone through IVF 

 

I went through IVF twice and so that’s also something that you know, you look at it you’re like cheese Wow, this is intense, because not only putting something that you feel is yours and special in this kind of box of three check box do and destroy. Do you want to donate to another person? Or do you want to donate research? And it’s weird to like go from something is very personal just to these three checkbox. And it’s also very finite on your life. It’s like what if something happens to you? What if something happens to your partner, if you have a partner, it’s a struggle for some of our patients to that they decide not to freeze embryos, they actually freeze eggs and sperm separately and then only inseminate one or two at a time. And so in other countries, it’s also illegal to freeze embryos. So in Italy can’t do embryo freezing you can only do egg and sperm.

 

 

N: Potential, you know, that always trips me up the potential that is bound up in them. So I you know, I’ve been thinking a lot and I tried to explore this in the essay about what it means to mother, right? What does it mean to when you think of mothering a child, as I mentioned before, it’s so much of what we love, right? Or what you think about is like nurturing potential growing potential. But what I started to think about as well is how much of mothering how much of parenthood is also about letting go and about seeing your children’s limits? At times and coming to accept you know, what isn’t going to be right like a child is born and it seems like they’re this blank slate and the sky’s the limit and they can be anything and do anything and they think anyone who you know has children in any you know, element for a preschool or elementary school age seems like, you know, there are things that that you need to let go of as a parent and things that your child will not ever be and maybe that’s not disappointing to you, but it’s disappointing to them or maybe in some way it is disappointing to you, but letting go and accepting what isn’t going to be or what shouldn’t be, I think is also a big part of parenting of mothering. So that is ultimately you know, what is what has helped me move forward in my embryo journey.

 

P: So would you say you’re at the end of the embryo journey are we’re still they’re still in limbo.

 

N: It’s still in limbo. I’m still in limbo. But I know the answer. I do know that. The answer is that I have to destroy these embryos, but I haven’t done it.

 

P: I mean, I don’t know if it gives you any comfort to imagine that no matter what you do, there’ll be regret. Because there’s no perfect answer here. Right. But while you’re talking, I’m thinking, why would I would probably donate them to science and then I can literally feel the regret of making that choice. And I don’t have any eggs and I haven’t made that choice. But there’s nothing here except having all the children which is not going to happen right for for almost everyone who goes through IVF that is not what the goal is to have all these have all these children and it’s a little bit of a mismatch between what interventional fertility can do and what our lives look like. 

 

And so maybe there’s some point in the future where they can better estimate which eggs will survive and which eggs will produce and they’ll take fewer and they’ll make fewer embryos and then we won’t have this dilemma because you won’t, I mean, you’re not going to be sad about an egg because you’re shedding eggs every month, right? So that’s a thing. Right? But right now we’re in this mismatch where we can’t I mean, it’s a little bit like everyone who goes through IVF The doctor has to choose how many embryos to put in there within your uterus, which is a wild decision that nature doesn’t force you to make in that way, right? You don’t have access to five embryos.

 

N: Right. Yeah. It is. I think it is a really interesting question because, you know, that I thought about while writing this pieces, would it have made a difference if my fertility doctor had said to me right now is the point in the journey when we’re going to talk about planning for frozen embryos? And yeah, you know, and thinking about that and I want you to be fully aware, you know, that this is a quandary that many parents face afterwards. And I don’t know maybe that would have led me to ask more questions about how many follicles that we’re trying to harvest. I’m not sure, but I don’t know, things might have changed, and maybe those conversations are part of the process now, but they weren’t when I was going through IVF. So it was sort of an unspoken aspect of the of the process.

 

P: I mean, I think IVF sheds some light on how little we know about many of the intricacies of this process. Even if you do IVF as you know, you don’t get pregnant every time.

 

N: Right. Oh, and totally and also you’re not so at the mercy of the knowledge of these doctors, right? Like, are you say that I expect if I have, you know, 13 follicles great like, let’s do it, like, produce 13 follicles. 

 

P: I asked Dr. Glenn. She can imagine a future in which we can grade egg and sperm so well that we know exactly what we need to use to get an embryo that will successfully lead to pregnancy.

 

Dr. Glenn: The problem is the attrition rate. I talked to this when patients are freezing eggs for future use. Is like well, how many eggs do I need and someone that triggered over 80% live birth rate of less than 35 year old would need to freeze 16 eggs? Not every egg survives a freeze thaw process not every egg gets fertilized. Not every fertilized egg makes it to day five. So freezing embryos is a better guarantee that you get embryos out of it.

 

P: Do you think there’s a time in the future where we will be able to identify markers on the egg to know which ones will freeze and which ones won’t? Or which ones will fertilize 

 

Dr. Glenn: future? Who knows right? I’m always impressed about what when I’m an embryology Lab. I’m always impressed but they can do. They also can look at a little bit if they’re doing a procedure called ICSI which is intracytoplasmic sperm injection. If there’s a problem with male factor or problem with the sperm, then they actually can take us in each individual sperm and injected into the egg. When they do that. They have to kind of clean up the egg a little bit. When they clean up the egg. They do get an idea of how good the egg looks and so they kind of grade them that way in our lab, but I’m sure in the future they’ll be able to look at the egg and kind of determine better about potential for how many fertilized and quality and those are our struggles right now is that we have a very limited view of quality you know, we can kind of determine quantity of how many is called ovarian reserve or how many eggs a woman has left that we have very limited achievement of is quality. likely they are to get pregnant with a successful healthy baby. And so there’s so much unknown out there. But it’s also hard because this is an ethical quandary about working with someone’s eggs, sperm or embryo 

 

P: and there’s no way before you make that decision to know whether it would have been viable like thought and let it grow a couple more days and see

 

Dr. Glenn: so a couple more days wouldn’t help or even Nestle work because the lab can only grow embryos to certain points of time and you don’t know until you put an embryo back whether or not it’s going to be good or not personal experience when I did my IVF cycle a few years ago after embryos get to day five, the embryologist looks under the microscope and grades them on how good they look very specific criteria about what’s called Hope Spanner they are embryos actually have a little protein shell kind of like an egg and they hatch out. So they look at that how thin it is how it doesn’t look like it’s going to hatch out and attach to a uterus. Then they look at two things that trophectoderm in the inner cell mass the trophectoderm comes the placenta and the inner cell mass becomes the embryo. They grade them and how good they look. And again there’s very strict criteria.

 

I had almost perfect looking at embryo with fabulous. I had a negative pregnancy test 

 

P: wow so that just means it didn’t attach or do you know what that means? There’s like they

 

Dr. Glenn: just did not attach or if it it tells you it was not good of quality. And there’s other things besides the embryo there’s a signals between the embryo and the uterus. Is a uterus being receptive at that time. Did it not you know get to that point. The and the uterus called Pina bogs and attached appropriately with the cytokines and the protein than amino acids just a little bit imbalanced that day. There’s so much we don’t know about implantation, but the embryo is not the only thing that’s important. 

 

N: You know, I don’t know if I would have had the perspective to ask the questions that might have prevented this quandary that I’m now in.

 

P: I dont know this for sure but I can well imagine that there’s some evolutionary pressure they’re forcing you to focus on reproduction as you know, up to the absence of anything else right because that’s kind of what you’re

 

N: I like that idea. take some pressure off. Yeah, I really like what you said earlier, though, about I don’t remember exactly how you put it but how, no matter what decision, you know, make or I make in this like there’s going to be regret. And I think that that’s also something it’s just a process of coming to terms with right that oh, there’s going to be some answer that makes everything okay. 

 

P: Who is hashing out these ethical issues is there there are medical ethicists who are working on it or? Well, there’s

 

Dr. Glenn: a lot of people that are not only just PhDs, but also there’s like an ethical committee on the American Society of Reproductive Medicine. We have ethical committee guidelines that discuss all these things. And usually you don’t want to just doctors on this panel. You want a lot of other great minds in there too. So there is definitely a lot of research people that you know, do their PhD in ethics. And so I would actually kind of go back to those ASRM community opinions and guidelines for ethics just as we continue to struggle with different topics as we learn more as we’re able to do more you know, when you look at the beginning part of IVF and the you know, late 80s, the chances of success disciple was like 2% and they couldn’t freeze extra extra embryos. They had no capability of doing it yet. And so as we get better at doing things, more ethics come up

 

N: there’s going to be something that happens in the future. That just makes it really, really clear that now is the time when I need to say goodbye to the embryos and I’m still sort of magically waiting for that. I know that I wanted to let go of these embryos but why today on Wednesday at 156 day now, and you know, and perhaps there will be some moments when crystal clear to me in some way that this is the moment when it just poetically makes sense, you know? So that’s I think, just part of trying to tamp down the regret.

 

P: Yes, yeah. Who wouldn’t search for clarity. That’s totally makes sense. I so appreciate you coming and talking about this because there’s not that many conversations about this and everyone who goes through IVF must have some version of this quandary…especially if you go through IVF and it is successful, then the potential of those embryos feels exceedingly real.

 

N: That’s exactly right. Yeah. Yeah. I think watching my son grow also was part of this difficulty in letting go of the embryos. These embryos were formed, you know, at the same time that he was formed, is so tangible to me. He is a particular person is a boy who loves breakdancing and Brawl, parsley, basketball, and his dog, you know, and he has his very particular room and his likes and dislikes and so not so hard to extrapolate from there right these other these other embryos but I I do want to be very clear also just because the abortion debate right now is so front center in our country that I think that our choices my husband’s and my choice, but he’s very much prefer to me my feelings are much bigger than his around this. And so it’s our choice, but it really it really is my choice just because of how his feelings lie. But my choice about what to do with these embryos feels very important to me the fact that I have the freedom to decide what to do with these embryos and that I know, given our family circumstances, given my husband’s and my age, whats right for them, and that to me feels like a part of mothering that feels like nobody terminates life. Nobody destroys frozen embryos because it’s easy, but because that is what they know to be to be right for them and for their life and, and for the life of the embryo or unborn fetus. So that’s just I don’t know if we want to go into all that but I do think since we’re talking about like this sort of like middle place where embryo scan between life and non life, you know, that’s sort of my my thinking on that and all there is right to deal with this like, as you say like coming to terms with the unsettlement of things such a big decision, but I’d still think that it’s a decision women should be able to make

 

P: I totally regret that the abortion debate is so political and so polarized, because it’s kind of a nuanced question, and it is, I think, if really want to talk about the science or what’s at stake. No, that gets into the conversation. It’s treated as is very black and white thing, which clearly it’s not, you’re in this middle space where it’s not in your body, and so even a little bit more leverage over it. But

 

N: I like to offer myself up as an example of someone who does not see an embryo as being as disposable as biopsy tissue, and does see the sort of weight of an embryos potential and yet I absolutely believe with my whole heart that a woman should have the choice of what to do with that embryo.

 

P: I totally agree. I just think like the abortion debate, debate forces women to say not life period at the end, while it is not a life it is something it is potential it is it is something that is important and valued, it is tricky. So maybe there will be more discussion around this topic if the abortion debate wasn’t hanging over it.

 

N: Totally. Well, I do think so many of our like public conversations force us into black and white thinking sort of like that polarized one side or or the other, but embryos really do occupy this very mental state, which is which makes them really interesting to think about. Yeah,

 

P: I totally agree. Well, Nicole, thanks so much for coming on and sharing your story. And I will definitely attach her essay to the show notes because it is beautifully as a writer totally blown away. And probably you do this too. When you read other people’s writings. There’s certain phrases where I think oh, so beautiful and Nicola has thought of it and now I can’t use it.

 

N: That is such a compliment. Thank you so much for your kind words and for reading the essay and for having me on your show.



P: thanks again to Nicole for sharing her story and her struggle about what to do with her frozen embryos…as Dr. Glenn suggested, ethics is working hard to keep pace with science, and until they are fully aligned it seems we each have to figure out how to manage this situation. To be clear I completely support a woman’s right to manage her own fertility, whether that involves a pregnancy or an embryo–but having that right doesn’t make the actual decision easier. I wish NIcole and her family luck and comfort in the decisions that she will make on her own horizon…and thanks to Dr. Glenn for sharing a little bit of her experience and her expertise about the complicated and fascinating process of IVF.

 

I will put a link to Nicole’s writing in the show notes, which can be found on war stories from the womb. Com…

 

Thank you for listening…if you liked the show, feel free to subscribe and share it with friends.

 

We’ll be back soon with another inspiring story



 

 

 

Episode 42 SN: Anything But Restful, a Bedrest Story: Aileen

If there’s one thing I can relate to directly, it’s the story of a high risk pregnancy. But the pregnancy that my guest encountered was something I have no first hand knowledge of: she ran into an issue that threatened a premature birth, which caused her doctor to prescribe bedrest–for five months, 150 days for anyone who is counting–of being horizontal, she was more or less plucked out of normal circulation and we talk about what that was like and how she managed it, in the midst of also juggling a move from brooklyn to a farm, which in part means a move from an apartment to a 100 year old farmhouse, and everything that comes with this dramatic change…

You can find more about Aileen and her work at her website  www.aileenweintraub.com 

Here is the amazon link to Knocked Down: A High Risk Memoir

And here is the link for signed pre-orders

Fibroids

https://www.mayoclinic.org/diseases-conditions/uterine-fibroids/symptoms-causes/syc-20354288https://www.uclahealth.org/fibroids/what-are-fibroids
https://my.clevelandclinic.org/health/diseases/9130-uterine-fibroids

size of the uterus

https://americanpregnancy.org/healthy-pregnancy/pregnancy-health-wellness/uterus-size-during-pregnancy/

Bedrest article by Dr. Mazaki-Tovi (et al.)

https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0198949

Audio Transcript

Paulette: Hi Welcome to War Stories from the Womb. I’m your host Paulette Kamenecka. I’m an economist and a writer, and the mother of two girls. If there’s one thing I can relate to directly, it’s the story of a high risk pregnancy. But the pregnancy that my guest encountered was something I have no first hand knowledge of: she ran into an issue that threatened a premature birth, which caused her doctor to prescribe bedrest–for five months, 150 days for anyone who is counting–of being horizontal, she was more or less plucked out of normal circulation and we talk about what that was like and how she managed it, in the midst of also juggling a move from brooklyn to a farm, which in part means a move from an apartment to a 100 year old farmhouse, and everything that comes with this dramatic change…

I also included a conversation with a researcher and professor of obstetrics and gynecology from Tel Aviv who, with colleagues, recently published some groundbreaking research on bedrest. He is incredibly interesting, and I regret that the recording quality from our conversation is not perfect–but I think you’ll want to hear what he has to say…

So let’s get to this inspiring story.

P: Hi, thanks so much for coming on the show. Can you introduce yourself and tell us where you’re from?

Aileen: Hi, my name is Aileen Weintraub and I’m from Brooklyn, New York. And I moved to the Hudson Valley about 20 years ago. And that’s where my story really starts. 

P: Alieen. Thanks so much for coming on the show and I’m excited to hear the story because I read your book Knocked Down, which was awesome. I’m assuming not all the bits made it into the book. So I’m excited to hear the details straight from you. Do you have any siblings?

A: Yes, I have one older brother, who is still in Brooklyn with my family. And we have a great relationship. We didn’t always have a great relationship and actually, my experience with my pregnancy really brought us together. 

P: Wow, that’s nice.

A:  Yeah. 

P: And did having a brother or growing up in your family create a desire you to have a family of your own?

A: Yes, absolutely. So I grew up in a conservative Jewish community. And the emphasis was on family. And I was really born and bred to have a big family. I was taught how to be a good wife, a good mother from a very young age and I wanted a lot of children. And so when I became pregnant and ended up on bedrest and had all these complications, it kind of changed my plans in a big way. And so that was really hard to, to take in and live with. 

P: Okay, so that’s totally interesting. So when you were thinking of a big family, were you thinking of like six kids?

A: Exactly. That was the number I had in my head that I was gonna have six kids. I was gonna be like Mary Poppins is going to be amazing. They were all going to just surround me. And you know, the birds would sing when I got up in the morning and it was it was a total fantasy, and obviously it didn’t work out that way. And and that was a lot to come to terms with

P: like you are I have imagined a big family. Not I wasn’t so ambitious for six. Although when I see families like that, I’m like,lucky. So does that mean that you walked into pregnancy, imagining it would be easy?

A: Yes. So by the time I became pregnant, most of my friends already were on their second, third kid. And I just assumed I would get pregnant and have an easy pregnancy and just start popping out kids and, you know, maybe work maybe work part time and that would just be my role for a long time. That’s really what I wanted. And it was shocking to me. And so it was a big disappointment when I was faced with all these complications and realized that that wasn’t going to happen for me.

P: Okay, so let’s walk into this. Was it easy to get pregnant?

A: Yes, it was very easy to get pregnant. And there’s actually a very funny story, which I I talk about a little in my book. It was New Year’s Eve, and my husband had the flu. And he was he was so sick, but you know, we were still newlyweds. So we didn’t even wait we got married. And really, this is the plan. Let’s start right away. And so it’s new year’s eve and I was ovulating. And I was like, Listen, this is it. And, you know, and it was super easy on me. And I got pregnant immediately. And so 

P: wow. 

A: I thought that was a great omen. And the first few months were typical. I had morning sickness, but nothing I couldn’t deal with. Yeah, that was a little surprising for my husband, you know, he would cook dinner and I would I would be like you’re cooking fish you can’t cook fish in this house. And so that was a learning curve for him. But other than a little things that you you would expect everything was completely fine. And then one day we were walking in New York City we were just strolling It was a beautiful spring day. And suddenly, I felt this pain in my lower belly. 

P: wait, how far along are we here? 

A: Right so I was four months along. Okay. And we were planning to go to a baby event where they showcase different baby products and, and things like that interview information, pamphlets. And that was the thing I was so into, like all these baby books and I was prepared. I was going in prepared and I was reading everything, researching all the safest products and it was all happening that day. Suddenly I have this pain and I don’t know what to do. So we decided to pack it up and go home. I call the doctor and of course you don’t get to speak to your doctor. You speak to the nurse if you’re lucky. And she kind of dismissed my symptoms. And said your probably find everybody experiences like cramping and things like that. And she wasn’t really taking me seriously but I was also kind of relieved because that’s what I wanted to hear. 

P: Totally. Yeah. 

A: And it was getting worse and worse and I happen to have had my appointment the next evening anyway, just my regular exam. And I’m assuming that everything’s going to be fine. You know, even though this pain is persisting. As we go into the exam, it’s later in the day. It’s almost evening I think I might have been the last appointment and you can see the doctor looked carried and rushed and wanted to get out of there. 

P: Yeah, that’s a bad sign. 

A: And I wanted to get out of there too. We had plans to go to this cute little restaurant on the water in Kingston. And all of a sudden, the energy in the room changes she’s saying something, I can’t even process what she’s saying. But I look at my husband’s face and I see the look on his face, and then it all kind of comes together. And I’m being rushed into an emergency sonogram and it turns out that I’ve three huge fibroids in my uterus

P: Okay, so here’s a quick primer on fibroids. If you aren’t familiar with them, uterine fibroids are non cancerous growths of the uterus, thing grow inside the walls or inside the main cavity or outside of yours. Many women have fibroids and don’t know about them because they might not cause any symptoms at all. Researchers from UCLA estimate that 70 to 80% of women will have them in their lifetime and are more likely in your 30s and 40s. And right around menopause. It can be a variety of sizes. To give a sense of dimension here and to maintain consistency with a fruit theme that will emerge later in the episode. At the end of the first trimester, the uterus is the size of a grapefruit and it grows to the size of about a watermelon by the third trimester. fibroids can be the size of a pea or a much bigger mass. So size and placement and the number you have may determine if you run into trouble with them or not. And for the magic question, we have no answer. We don’t know what causes their development

A: and one is pressing on my cervix, causing early effacement. And she basically says to me, you’ll be lucky if your baby makes it to 24 weeks.

P: Good Lord. Oh my God,

A: it was so shocking, because just the day before everything was fine, and we were horrified

P:  so let me ask you something ex post. So my fibroids or anything like that, but I also got very direct and not positive news from the OBS. And in retrospect, I understand it as they’re managing my expectations. How do you feel about that kind of response to now do you still think it’s not appropriate or what do you think of it? Now?

A: that’s  a really good question, because I think it’s important for doctors to manage expectations. But I also think there’s a way to do it, where you’re not putting so much fear and anxiety into the person you’re talking to. 

P: Yeah, 

A: who’s already feeling so emotional. So raw and so vulnerable. And I think there’s a balance 

P: Yeah, you’re right. The other thing that helped me to process that kind of thing is to remember that my doctor is a person and just like me get’s nervous about stuff and Dr. Raven freaking out and unfortunately she entirely sure that with you.

A: Right, exactly. And you can tell she was already tired and but that’s not an excuse when you’re delivering bad news. You have to have some sense of professionalism and, and she was she was professional and she was a good doctor. I don’t want to say that she wasn’t doing a good job. It was just very overwhelming in that moment. And I’m not one who needs things sugarcoat it, I left information. I understand the doctors job is to be a doctor give me the best care the doctors job isn’t to be a therapist. But the healthcare community I feel like is especially when it comes to women’s health and maternal health has a long way to go. The way they speak to women, the way they speak about women’s bodies and the terms they use. So for example, the word incompetent cervix, 

P: yeah, 

A: is so offensive to begin with

P: agreed. 

A: What it does is it puts shame on the woman before they even understand what’s going on. Yeah, my left feeling I had caused this. Yeah. You’re basically saying there is a part of you that is incompetent. 

P: Yeah, yeah. Yeah. 

A: And they’re these terms are outdated. There’s terms like hustle uterus, geriatric pregnancy. All these terms should be retired and we need to change the dialogue on that.

P: I totally agree. I’m maybe in the shownotes or at the end of the episode, we’ll try to rebrand incompetent cervix. You and I right here. Make it happen. Well, that’s a terrifying prognosis. And then she send you home or what do you do with that?

 

A: so the next day she had sent me to a specialist. I can see and the specialist basically confirmed what she had said but made it sound a little less tragic. So he did the job of saying okay, you know, we’ve got this going to go on bed rest for five months. And we’ll see how it goes. And hearing that bedrest for five months to just expect a woman to check out of life. Almost half a year to become basically an incubator is a big thing to expect. And it shouldn’t be something that is done lightly and at the time, almost a million women a year were put on bed rest. We are lucky to

P: When I started to research the issue of bedrest, I came upon an article published in 2018 published by a group of doctors out of the Sackler School of Medicine in Tel Aviv and they used a brilliant technique to really get at the heart of what bedrest does and doesn’t do and we are lucky enough to talk to one of the paper’s authors: have Dr. Misaki Toby on the show a Professor of Obstetrics and Gynecology, and a researcher who has investigated the efficacy of bedrest for a variety of outcomes. Dr. Mazaki Toby, thanks so much for coming on. 

Dr. Mazaki Tovi: Thank you very much for the time. Thank you for having me. 

P: the Idea for bedrest came up in the 1830s I can’t remember what that said you know what, what instigated that idea,

Dr. MT: the root of the to do and the the initiative for this bill was actually came from orthopedic issues. We’ll come to think about it. It’s it’s it’s a logic if you broke a leg, somebody that you will not have you’ll have a bedrest and will not put a stress on your broken leg. And then obviously, it was extended to other disciplines in medicine. And another thing that I must say that actually may facilitate the use of bedrest in obstetrics is the fact that 100% of the population is women. So, yes, I must say that well, my my feeling is that if you have to prescribe that was for women and to men and that can be a manifestation of prejudice against women because you said okay, usually, you know, the other spouse in the provider. and the women you know, they should be at home to begin with, so if you’ve discovered bedrest then you didn’t have given harm too much. So my feeling is that said that we’re dealing with women with actually made the dependences so to speak of this treatment to set rates a little bit easier.

P: That’s a whole lot of outdated there. That’s a whole lot.

Dr. MT:  Absolutely. 

A: and now finally, I’m starting to read a few articles and journals here and there about how doctors are prescribing it a little less, but it’s still very prevalent. And I think we don’t take into account not only the physical aspects of what it means to be on bedrest. The mental load that it’s putting on a person who has to lay there for five months and give up their autonomy. Their finances have to shift their career and that’s another place that the healthcare community can step up and provide resources. I’m not an expert, so I would never ever advise somebody not to listen to their doctor, but I would advise them to do some research and really think about advocating for themselves and making sure that they understand what’s expected and what’s not. And why.

P: and I think what we should be doing is pressing the research community. I mean, the doctor I spoke with yesterday said, part of the reason we do that is because we just don’t know and it’s such a vulnerable period. We want to be as cautious as we can. But there’s all kinds of measurable consequences of bedrest, and we don’t want to works also the way you say it, to say to a woman, okay, now you’re going to leave your job or whatever you’re doing and your family down for five months is crazy. 

A: exactly they’re you’re not taking into account that goes along with invest. It’s kind of like the stock app. Oh, we don’t know. What’s wrong with you. We don’t know how to fix it. Yep. All we can offer. And more research really needs to be done and more money needs to be put into research on bed resting women.

P: Consistent with what Aileen is saying, we do need more research on bedrest, and although Dr. Mazaki Tovi’s study focused on preterm labor, and not on the specific issue that brought Aileen to bedrest, he has a lot to teach us.. Dr. Mazaki-Tovi, can you actually define bedrest? I’ve talked to a couple of obese about it. And maybe doctors mean different things when they say bedrest.

Absolutely and this is one of the difficult this therapeutic measures is exactly what do you mean by by bed rest. For some it means only that doing the work. Others is just decrease, you know the household it is for others is just practically to be a bit weird. And so there is a lot of confusion about it. And actually this so called therapeutic visual is ill defined. So the poor woman don’t exactly know what they have to do.

P: Yeah, I’m assuming  that there are multiple reasons for bed rest. Why doctors prescribe bed rest?

Dr. MT: Yes, actually. The so called bed was has numerous indication it looks different than it was to prevent discourage twins. Or triplets. Also had an abortion, placenta previa. Sure, it seems that bedrest for many, many physicians and healthcare providers will seem like a silver bullet like medical therapeutic measure,that can prevent all complications indication of pregnancy and the tourists is actually the other way around.

P: So why don’t you tell us a little bit about your study on bed rest and what makes it so unique and so important in the literature on bed rest?

Dr. MT: I will say that the implicit argument bedrest is that you won’t increase your level of activity, then you will harm your pregnancy and you will harm your baby. Nothing can be further from truth. I meet a lot of high risk pregnant women, and I noticed that almost all of them had a self belief guilt, about doing too much physical activity. And this is because of this activity that nothing has happened to him with preterm labor or bleeding will discourage and so on and so forth. And that encouraged us to conduct a study in which we try to quantify the level of activity so until now, activity was not objectively quantified, that means if a physician prescribed to you a bedrest then you know exactly what does it mean and actually there is no way we can follow up and see whether or not you are indeed in bed rest. 

So what we decided to do is to try to objectively quantify it and we did it by pedometer, a special device that can count the number of steps that you do a day. And we give this device to pregnant women with extremely high risk for preterm labor and we ask them to wear it for at least one week, including one weekend. It wasn’t them actually use it for two weeks or more. And one important thing that I have to do to remind you that didn’t have access to the data and also dependents women have access to the data. So we are completely blinded. How many steps each and every woman took during the study. And what we found was actually amazing, but what’s surprising I must say, found that more steps you’ve taken the the lesser risk for preterm labor. So it’s counterintuitive. 

P: Yeah, 

Dr. MT: so don’t do that we’re bedridden, and it takes to actually deliver earlier. So not only is not helpful can be dangerous. So we found out that if you do approximately like 4000 steps a day, that’s fine, to be no harm.

P: One thing that’s so interesting about your study is when you said you’re objectively quantifying activity, what I understand that to mean is that other studies are basically asking women to self report how much did you walk around but then I’m guessing that happens with like a survey to say a lot a little not much. Which is a super hard thing to keep track of right it’s it’s not even a

DrMT: that was the initiative. For the study, we try to quantify. We thought about the load how we how can you quantify physical activity, because as you mentioned correctly, until the study, they will only questionnaire that the dependent living had to to fill in, usually days and weeks and months. After the pregnancy and you know there is a recall bias, you don’t think that you remember what you did when you didn’t do is obviously some activities like swimming, so on were less unreported. So we decided to have a very, very objective way to measure the activity in the book actually uniqueness of the study.

P: That’s amazing. That was such a good idea. The other thing that makes you think when when I read your paper was, Oh, we don’t really understand what causes preterm labor. So it’s weird to think if you lay down it won’t happen. 

Dr. MT: Absolutely. You’re absolutely correct. You know, if you if you ask the leading individual that investigate preterm labor understand that preterm labor would actually syndrome. So, you can have preterm labor because you have problems with the service and you can you may have become able to cause a problem with the uterus or with the placenta. Because you’re having to  triplets. It’s all because you’re having an infection. And the idea that one solution will solve all these problems scientifically is absolutely ridiculous. 

A: I Think there’s a scene in my book where I actually Google bedrest and research and there are no studies at that time where there’s so few studies but so I started just researching like, stupid studies just to see what people are actually studying. Right. And so there’s a line in my book that says, Oh, well, we now know that spider man isn’t real because someone put time and money into researching, but these bed resting women who cares about them, they’re not as important and that’s really what needs to change.

P: Yeah, I mean, your story is a good one to spotlight many things that should absolutely be known or studied at this point that are not….but let’s focus on your particular story: so you’re told you have to go on bed rest and what what actually happens.

A: So it’s really interesting because now I live in the Hudson Valley and New to the Hudson Valley. I just recently moved from Brooklyn to my husband’s rickety old farmhouse that’s possibly haunted. In the middle of nowhere, and he has just bought a power equipment business, and actually the timing couldn’t have been worse. The day we got home from the specialist was the day he signed the papers of ownership. 

P: Wow, 

A: this and he had to go like he’s like he dropped me off. We ate lunch and he’s like, I have this business now. I gotta get the keys and, and that just plunged us into chaos. And we had all these plans that I worked at the business, I would be part of it. I was still doing freelancing. We were financially struggling just because we invested all our money but we had a plan and that plan just fell apart and I didn’t have a support system, my whole community was in Brooklyn. So that day, I’m alone in the house. And I’m about to get into bed and I’m like, Am I really going to do this and I pull back the sheets and I was like what let’s think about this for a minute and it was a really hard decision. Especially for someone who wasn’t used to staying put for so long.

P: Are you still in pain? Or how’s that going?

A: So I was in pain for a very long time and then it would kind of come and go for a while because your uterus ships. And so sometimes there’ll be a lot of pressure. Sometimes there will be less pressure, but I was always incredibly uncomfortable. And as I’m bed resting, my body is continuing to fail my muscles start to atrophy. I develop hip dysplasia. So even if I want to walk can’t walk my hips freeze up. I develop gestational diabetes, and I have to prick myself with a needle five times a day. 

P: Oh, that’s so terrible. 

A: Just one thing after another. 

P: I brought a question about the physical toll of bedrest to Dr. MT. So one specific issue that Aileen dealt with was hip dysplasia. Can you kind of walk us through why that would be a consequence of bed rest?

Dr. MT: Well, absolutely. You know, when you are bedridden  the I mean, you have to understand that that was prescribed by the physician. So as far as we were concerned, this is this is the a theraputic measurement like taking a pill or taking the short women will do missing dependency to be successful. And the will of the women to help the dependency successful is absolutely see the dramatic power. In fact I this is the most powerful thing I ever made. So they’re very devoted to dependency are committed to dependency and then we’ll do that and then we’ll come to bed with someone will just lie down all day that not integrate only, you know only only for photonic period. Yes and nothing more. That can be disastrous for the for the musculoskeletal system, it because it can cause dysplasia and also decrease the intensity of the bones and decrease the frequency of the muscle tone and all the thing can definitely happen from just lying in bed  all day

A: And theres also a scene in in the book you know, we’re in bed and I’m not getting very many visitors I did have one or two people come and bring lunch or a scone and that was life saving one of my friends actually brought me the happy days DVD at the time and and it was the most beautiful gift like just hours and hours of Happy Days. And but other than that I was really alone. You know, my mother was still working at the time. She hadn’t retired yet, and she would come up from the city and she was my saving grace and her relationship just blossomed during that time and I learned to appreciate her and all she was doing and all she had done for me that I never really understood when she came up to visit and we would talk about so many things we would talk about marriage and how hard it was to be married and understand each other especially during difficult times. She cleans she would cook she was really my savior.

P: Yeah, parenting has taught me so much about my mom that makes me appreciate all these things I look at differently now.

A: Right? All of a sudden my mother was one of the smartest people in the world.

P: That’s awesome. Yeah. So beggars sounds unbelievably hard, especially in this context where you’re away from everyone and your husband’s gone and you’re just alone in the house with the ghosts all day, right? Is there any magic? How did you get through it?

A: How did I get through it? I get through it one day at a time and actually one of the things that helped me get through it was writing about it. You know, I’m a writer, and suddenly I couldn’t spend a lot of time writing. I couldn’t balance the laptop laying down. I was in too much pain. And so I began writing these little journals about my day and trying to find humor in my day. Even though things were so hard because I really feel like even when there’s so much trauma, if you can find a little joy or something a little ironic or little funny, really helps you get through and so I started writing these one or two paragraph journals, and I emailed them to my brother or my friend just as kind of a connection. And that was really when my book was born. Those were the seeds from my book and from those journals. Years later I went back and read them and each chapter was basically from a journal.

P: That’s very cool. I will say that the medical experience provides a lot of absurdity. So there’s it’s right there’s things that I think people in medicine experience daily which are new to civilians like us when we go in. I feel like there’s a there’s a pretty wide divide between those two things which can sometimes be entertaining unintentionally.

A: Absolutely. And I’ve had so many doctors because out my practice, had this rule that you had to see every doctor in the practice because you didn’t know who’s going to be on call. So you wanted to know them all. And each doctor would tell me something different. 

P: Yeah. 

A: And give me some different directives. And it was driving me bananas because I was able to do this. Well, this doctor said that and we’re saying this. And so I finally decided to say I need to have one doctor. And that’s how I started to advocate for myself along the way. So instead of just accepting the diagnosis, accepting everything, people were telling me I hit the brakes on that I began to empower myself. Okay, I am in control of my body and I’m going to have a say in how this goes what happens to my body and so I picked one doctor, who I felt was a really good surgeon who I had a good rapport with, and that definitely made things go a lot more smoothly. 

P: Okay, good. Good. And Are they checking you every week? Or what’s the schedule like?

A: That was the only time I got to be released from my bed rest sentence was to go to the doctor so I didn’t even mind it so much. And I would go every two weeks, either to the specialist or to my doctor. There was always an appointment to go to. And you know, then there was the gestational diabetes appointment, which was in a lab where I had to stay for I think was three hours because I failed the first test and then they give you a second testing and drink this awful fluid and they take your blood every hour. I can’t remember exactly, but there was a lot of blood being drawn. And those were really the only times I left the house.

P: Yeah, so I can see how they became special. 

A: It’s very sad as special.. 

P: as forms of escape.

P: The one saving grace before that was that my husband would come home for five minutes with a milkshake every day, and then I would get to see his beautiful face. He was so busy. And half the time he would come home and the phone would be propped up to his ear and he just kind of dropped it for me and he didn’t have any time at all. The lady used to know exactly what time he was going to be there and just have it on the counter. So you have to waste a single minute, but it was so important to me that milkshake. It was the connection I really needed during the day. And then when I got diabetes, it was really hard and I began to have to deal with prenatal depression, prenatal anxiety. That was a whole other experience I had no plan for

P: Yeah, that seems unbelievably hard. 

P: As Aileen suggests, bedrest can be really mentally taxing, an issue that Dr. Mazaki Tovi addresses. 

 Aileen was slotted into bedrest because her cervix was opening prematurely. But I’m guessing that this only happens thanks to a complicated series of signalling, so she was saying that her doctors prescribed bedrest because they didn’t have a better way to manage those problems and it probably wouldn’t make the problem worse.

Dr. MT: Exactly. So actually, this is a very common misconception because Okay, so if you go to a physician or healthcare provider will describe bandwidth. The idea is that, okay, if it won’t help will hurt. Again, this is a this is a huge mistake, because bedrest is a tremendous toll from the woman It has physical toll, like dramatic emotional impact of talking about stress, and depression and feeling of of course, about all the economic importance, and all those things that are actually affecting them dramatically without providing help.. Tragedy of this treatment.

P: bedrest does seem like a sentence, right? I think people who don’t experience it and from the outside might say, Oh, it’s so nice. You can watch TV or do what you want. And that’s fine, probably for like two days. And then

A: and I think people understand that now much more with the pandemic. 

P: yeah, totally. 

A: I wrote this piece for the Washington Post about how bed rest prepared me for this pandemic. What I had to do every day is self care. And it was really just starting to appreciate small things that you don’t notice. So for example, I began to realize that there were these birds that would come every day at noon and circle the yard. They were the same birds every day and this was their territory. And I had never noticed that before. I began to appreciating the smell of the lilacs on the tree outside on my deck. You know, there was a tree right by my deck. So there were small things that I started to really notice. And so that was a little bit of a saving grace and growing experience for me.

P: yeah I can imagine coming from Brooklyn, moving to a rural area, and being on bedrest is a pretty dramatic slowdown. I’m assuming life in Brooklyn is much faster

A: than it was terrifying. So out of my comfort zone living in an old farmhouse to begin with, yeah, and then not to be able to leave that farmhouse. No to see people was so hard for me because in Brooklyn, you walk outside your door, and you see people and there’s a hustle and bustle 

At one point by marriage really just starts to crumble under the strain. There’s such a financial strain. We’re trying to renovate the house for the baby. There’s the house has been renovated in probably almost 100 years 

P: Oh Good Lord, 

A: it was my husband’s family’s farm. There were so many ridiculous things that you can’t even imagine going on his house, and we were having a baby we needed to kind of get up to speed. At one point. Things got so bad. I had to leave. And I went back to Brooklyn and I stayed with my mom and just being in her apartment in Brooklyn and smelling the food from the neighbors and hearing the sirens and the traffic and the kids playing outside. It was so cathartic and my friends came to visit and we talked about things other than pregnancy and other than bedrest and that made me feel whole again.

P: Yeah. That’s, that’s true. Now that you mentioned that I can see how your world has shrunk to this. You know bed that you’re on. You don’t have reminders in that new house of kind of your life before pregnancy,

A: right. And the other thing is this house because it was a family farmhouse. There were so many memories in it that weren’t mine.

P:  Yeah. 

A: so the paintings on the wall, the furniture, none of that was ours. And it was really like being in a stranger’s house and we were trying to make it our own. And we knew it would take time, but we had a plan and then the plan kind of fell apart.

P: Yeah, yeah, it sounds like you’re relieved or bed rest at some point. How does that happen?

A: I wasn’t relieved of bed rest, at  the very end I was given an hour a day to be right, who’s like parole like you get an hour a day to be out in the world. And now I’m nine months pregnant, and I can barely walk and now I’m afraid to go out. I’m depressed I have anxiety. I am petrified How did they expect me to just pick up my life and start over so then I was able to

P: wait so let’s talk about that a little bit what happens about appointment and because that does seem like they so don’t understand what your life is like on bedrest to say like, oh, we put you on pause, but now we’ll hit play.

A: Right You know, I was seeing a specialist and I was seeing my OBGYN. They didn’t always agree. The specialist said at some point, I’m not sure you need to be on bedrest. And my OBGYN was like let’s hold up on that you’re doing really well. So why mess with it now you’re almost at the finish line. And I kind of agreed with that. And I had so much fear that I was gonna mess it up. Yeah, do something and be responsible for something going wrong. So I was like, Well, you’re right. This is working. 

P: What’s the way forward?

What do we do now? Now that we have a sense that but rest is not the answer. What what do you do?

Dr. MT: Well, it’s extremely hard because you know, discovering business is actually entrenched into the DNA of the medical system. It’s extremely, extremely hard to take it out. But I would start with just approaching the women is complication of pregnancy and let them know that they cannot hurt the pregnancy. They don’t. Any complication that happened in pregnancy is not because of the woman is not because they work too much or the rain, or the babies or the client service. It has nothing to do with the complication of pregnancy. First and foremost, and this is more important to be from educating the medical staff is to educate women and let them know that they are not guilty of anything, this is the most important thing. The other thing is to educate and change in the perception of the asker and that unfortunately will take at least a decade or so. More and more studies that we did are coming in hopefully that will change the indications in the in the widespread use of bedrest and the therapeutic measures, but unfortunately I must say that will take place a decade.

A: So I was like your right. away, we still inside my body. So that’s where my baby needs to stay right now. And so I’m going to keep doing what I’m doing. So my OBGYN said well, you can have an hour a day. Right? That helped with my mental health. A lot

 P: And what  WHAT WAS THAT based on? Why did they change their their mind? To some degree?

A: They didn’t really share that with me so much. 

P: Oh, wow. 

A: That’s the thing. Like it’s like you are a magician like one day. This is what I’m supposed to do one day, this is what I’m supposed to do. And there were no clear answers. But my feeling is that I had made it far enough along the same for me to start adding in more activity. I was past the danger zone

P: and how are you feeling now emotionally about that? Because I imagine some amount of pressure has lifted so that in this point if the baby is born from that day on, we think there’ll be okay.

A: In my book, you’ll see that it’s broken up by week. Each chapter is a different week. As I check off the weeks I feel safer that my baby will make it and survive and live and that’s my one and only goal on bedrest is to keep this baby alive. So I’m checking off weeks and I actually start watching morning show with produce Pete who talks about vegetables and he tells you what the week vegetable is and what’s in season. I’m like if I can only get to Apple season when my baby supposed to be born. And that’s what I was basing it on fruit and vegetable

P: that gives us a sense of state of mind. Okay, and then do you make it to 40 weeks or how do you how far do you make it

A: I do you make it to 40 weeks? 

P: Wow. 

A: And that was really shocking to me because all I can think was that moment when my doctor said you will be lucky if your baby makes it till 24 weeks and to make it to 40 Weeks was amazing. I went into the doctor’s office and all of a sudden they’re saying maybe late, like prepare for being late. And I’m like what are you talking about?

P: Oh, by the way, you have triplets we forgot to mention.

A: Exactly. I’m like so then I started to really question the whole medical community, like, how could I go from being on bedrest Because he thought I was gonna give birth any second to not giving birth for another three, three weeks.

P: So that is so now that we’ve had this conversation that puts in context for me that first scary phrase, and they should never give you a date. They may say like you may go too early because your cervix is a face to say 24 weeks now seems nuts because how would you know how would you know the you know magic?

A: And that’s what I learned is that doctors don’t always know as much as we think they know or want them to know. And that’s okay. They don’t always have the answers and there isn’t the research. I don’t put the blame on doctors at all for that. It’s just how that information is communicated.

P: I totally agree. And actually the way I picked doctors is if they say they don’t know something, I think you’re the doctor for me. I want to hear you. I want to hear you don’t know, right? I don’t I don’t expect you to know everything and I want us to be honest about the boundary. 

A: Absolutely. 

P: You want to feel totally different if that first doctor had said, I don’t know how this is gonna go. But your cervix is facing too much and we’re gonna have to like change up what we’re doing.

A: Right. Well, these are my concerns. Right? Right. 

P: So I can’t believe you’re going to be late. Take us to the day that baby is born like how do you know today’s the day? Are you late? How does that all go?

A: This is actually very funny story. It’s four o’clock in the morning. I wake up and I’m wide open and I feel this kind of swirly feeling. And that’s the best I can explain it and it’s just like a feeling I’ve never had before I don’t have any pain. I just feel swirly. I can’t go back to sleep. I finally kind of doze off a little my husband gets up goes to work. And I spend the day watching movies and taking baths.

P: feeling swirly the whole time

A: the swirling starts to change into excruciating back pain. Wow. And goes now I’ve been on bed rest for five months. I’ve had so many aches and pains. There was one point in this whole experience where my fibroids start shrinking. The pain from that was so excruciating. I didn’t know how I was going to get through it. So I just assumed that this was just another pain that I had to work through. My doctor told me I was going to be late and I’m not feeling any contractions and so the whole day passes like this and they’re getting worse and worse these pains in my back. Finally my husband comes home later in the evening. And at one point I think the pain is so bad I end up on the floor. 

P: Oh Wow, 

A: I kind of have this idea that maybe I should check in with my Doula who I hired to advise me and she says to me, it sounds like you’re in pre labor. And so I take your word for it. And I’ve tried to pretend nothing’s happening, but I I just can’t get off the floor now. And my husband’s preoccupied. He’s on the phone. He’s doing all this work stuff. And my Doula happened to be at a party that day when I called her that evening and so I didn’t want to bother her again. And this is something women do right. Like they’re they could be having a medical emergency but they don’t want to upset anybody else, or help themselves by imposing on somebody. How do I say I’m going to call my doctor and the doctor was like, to come in and I was like, No, it’s kind of late, I don’t really want to…. And Doctor is insisting and I’m like, What is wrong with you? This is good. There’s no reason for me to come in and just giving you a heads up. So finally, the doctor says, Tell me the hospitals. Let’s just take a look. 

So now everyone knows something that I have yet to discover for myself. And we’re trying to get out the door and I can’t get out the door because the pain is so bad. Every time we start to leave I have to get on the floor. And at one point the dog gets so upset with me. The dog is pawing at my face kind of woke me. Why is everyone acting so strange? I just have some back pain with my husband kind of herds me to the car, and he’s like you just gonna take the bag we packed and I’m like, don’t be ridiculous. We’ll be home in an hour. I didn’t just in case I finally get into the backseat. I can’t even get into the front seat. And laying down in the back of this car and we’re going over the Kingston Rhinecliff bridge and my husband says to me, Listen, I don’t want you to be upset, but I have something to tell you. And I’m like, what could you possibly have to say right now that would upset me. 

And he says just listen to my thoughts on this. I think you might be in labor. I’ve been timing you and it seems like maybe you’re having some contractions. And then I think about it for a minute and I’m like, wow, this is the moment I’ve been waiting for. Since I was a four year old child in Brooklyn learning how to swaddle my Holly Hobbie doll. This is it. This is happening. So we get to the Birthing Center, which is absolutely beautiful. It’s attached to the hospital, but it’s like a little house with a beautiful porch. And by this time, I think I could let my Doula know that we’re heading over to the hospital and she meets me in the parking lot. And she’s  like I want you to breathe and want me to take a deep grounding breath and I basically push her aside and say, lady, I don’t have time for this I gotta get to the hospital. So so that’s how it started. That was that was how I finally acknowledged that this was finally happening.

P: I remember asking people, What do contractions feel like? And every single person said, Oh, you’ll know and also back Labor’s not what you expect are not what I would expect. I wouldn’t know what to do with that either.

A: Absolutely. And no one told me anything about back labor but didn’t have a single traditional contraction. Yeah, it was it was hard. It was very painful. And they said that the reason that I was in Back labor was because of my fibroids. I don’t know if that was true. I didn’t really have time to research it in the moment but they said your this is because of your fibroids that you’re not having traditional contractions.

P: wow so when you get to the birthing center, are you imagining a vaginal delivery or where are we on the delivery

A: right? So did you happen and I obviously don’t want to give away the whole story for my book, but the doctors had gone back and forth about that quite a few times whether I was going to have a plan C section because of the fibroids, whether I could deliver vaginally and pretty much towards the end of my pregnancy. They switched it up and said you can deliver vaginally and I wasn’t at all prepared for that. Because I had been planning on a C section, okay. And so that’s what I was going for, and I was going for that for 36 hours.

P:  Oh my God. 

A: And so here I am in the hospital, 36 hours of labor, and I’ve been in bed for five months. And now I’m going to have a baby on a sleep deficit.

P: I was gonna say you must be like Looney Tunes at this point. Right? That’s

A: And it’s so ironic. I spent five months in bed and now I’m having this baby completely exhausted. 

P: Yeah. 

A: I will never catch up from this. And it took a long time to catch up.

P: before  you encountered any trouble with your pregnancy. Had you imagined no waterbirth or angels with harps coming just from by your ears or like what was your picture of what delivery be like

A: I had planned to be in a hospital with a doula from the start. We hired the doula before there were any issues. We had checked out the birthing center. It was really a comfortable homey place attached to a hospital so it was the perfect ideal place to give birth and I did I did get to give birth there luckily.

P: Oh Good, good. And that was a success. I’m imagining.

A: Yes. So we’re in labor for 36 hours. They have a birthing tub. We’re trying everything. And most of this time up until 25 hours I’m doing this without any drugs. And I finally call it and say Listen, I need some relief. And so they gave me all sorts of different things at various points. And now we’re an hour maybe 34 and the doctor says you’re nine centimeters dilated. I just had some sort of cocktail. I don’t know if it’s an epidural and I don’t even know what they’re giving me at this point. But I can’t feel anything. And the doctor says I can kind of push that last meter for you. So you can start pushing but I don’t think you can. I think you’re exhausted and I think that your baby’s heart rate is climbing and we need to get this baby out now. I was like I can push. She’s like you can’t push. And I was like no no I can push and she was like, Man, I’m things and she was right there. I couldn’t feel a thing. There was no way I was pushing but in my mind, I felt like I could reel this baby out of my body.

P: Well you willed it in. Also, like are you appreciating the irony of like, we’re worried your cervix will pop open at any moment and now you’re like at nine and it’s not

A: and the baby will come out babies like and I think honestly I’m it’s been so much time and energy holding this baby in. 

P: Yeah, 

A: that in truth it was hard for me to let go and understand that it was okay to give birth and they will be in for a C section and everything went pretty smoothly from there and I had a beautiful baby boy

P: such a great ending. And how old is the baby now?

A: Well, let me start by saying that it took a very long time to process this story and to write it took even longer. My son is 15 now so

P: awesome. It does take a long time to process this is a good long runway now that you’ve had this time to process it. Is there anything you would have told young Aileen into this process that would help her

A: I try to think of it. What would I tell a woman on bedrest? Yeah and what I would say is the most important thing is to say this is your body and you need to advocate for yourself and make sure you are heard and do your own research and that no matter what happens You’re a strong woman and you will get through this because I didn’t know any of that at the time.

P: Yeah, yeah. There’s no test like this test right? It is like physical and emotional and in pressing in ways that nothing else is.

A: Right. And I think that what is important to understand is when you go on bed rest it’s not just laying down for five months and reading some book, Your whole life changes and that’s important to know and to be prepared for continued steps and also to acknowledge your emotions and feelings and know that they’re real and that you have a right to feel those things and that there are people you can talk to about it. And you should reach out for help. And I had felt so much shame that I had somehow caused this that embarrassed by my fibroids by my incompetent cervix. I didn’t know if I could talk to anybody about it. And I think that would have made a big difference if I felt more supported in that way.

P: It does sound like you’re toughing it out by yourself in in a space that you shouldn’t be alone. And it’s such good advice to tell other women that having more support around you can make a difference. It’s challenging to be pregnant and it’s hard to live in a body that’s not always compliant.  All you can do is adjust when things don’t go as planned–and you made major adjustments to see this pregnancy through, and in the end your body cooperated with that… To honor the pledge i made at the beginning of our conversation, I am thinking about enthusiastic cervix instead of  incompetent cervix, but we can we can work on that and your book is called knock down. Is there a subtitle?

A: Yes, it’s called knock down a high risk memoir and it is available for pre order now it is out on March 1 wherever books are sold for signed copies if someone would like to order from rough draft barn books is an amazing indie bookstore in Kingston, New York and the link is on their website. And they’re fantastic. Anyone is local to Kingston. I suggest you go visit them the bread the coffee they want most amazing books. It’s one of my favorite places.

P: I will put a link to that in the show notes and this sounds like the perfect book for many people but if you are on bed rest and wondering if you are alone in this might pick up knock down 

A: I think this is a book for women who’ve had children for bed resting women and for Gen X women and any woman really who wants to hear a funny story about a very serious topic. And I think that this is something that most people can relate to. There are also aspects of growing up in a Jewish community growing up in Brooklyn dealing with trauma marriage, so there’s something for everybody in this book.

P: that sounds awesome So those when I read it and thought it was great, it’s really emotional, which I think is a hard thing to communicate as a writer and I think that like I will remember this book. This will stay with me because it I definitely felt it 

A: thanks so much. 

P: Thanks so much for sharing it. Thanks so much for coming on the show and good luck.

A: Thank you so much for having me this was a great conversation.

P: I want to again thank Dr. Mazaki Tovi for taking the time to come on the show and talk about his research. I think one important take away from his work is that if you are prescribed bedrest it’s a good idea to talk very specifically about what that means in your own case…and thanks also to Aileen for sharing her story and her book. I will put links in the show notes to the research on bedrest and to the bookstores that Aileen mentioned. I hope you enjoyed this episode. Feel free to subscribe to the show and share it with friends.

We’ll be back soon with another story of overcoming