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 46: A Prayer Answered: Rachel’s Story
Episode 46 SN: A Prayer Answered: Rachel’s story
Pregnancy, both physically and emotionally, is a personally transformative event no matter what else is going on in the pregnant person’s life. The context in which you are experiencing this pregnancy, be it calm or dramatic, can add to the challenge. Today’s guest experienced flux in both her extended family, her immediate family, and the medical community she was a part of. While she successfully had six children, five of the births involved emergencies, and her third pregnancy, the focus of today’s conversation, was seeded with issues from the very start. Despite the many tricky elements of this pregnancy and birth, my guest (and eventually her daughter) persevere and create something beautiful: a beautiful baby who grows up to have a beautiful life.
Poet and essayist, Rachel Neve-Midbar’s collection Salaam of Birds won the 2018 Patricia Bibby First Book Award (available here) She is also the author of the chapbook, What the Light Reveals (here). Rachel’s is a current PhD candidate at The University of Southern California where her research concerns menstruation in contemporary poetry. You can read her own menstrual memoir essay “Traveling the Red Road” here. More at rachelnevemidbar.com.
atrial septal defect
Audio Transcript
Paulette: Hi welcome to war stories from the womb
I’m you host Paulette Kamenecka. I’m an economist and a writer and the mother of two girls.
Pregnancy, both physically and emotionally, is a personally transformative event no matter what else is going on in the pregnant person’s life. The context in which you are experiencing this pregnancy, be it calm or dramatic, can add to the challenge. Today’s guest experienced flux in both her extended family, her immediate family, and the medical community she was a part of. While she successfully had six children, five of the births involved emergencies, and her third pregnancy, the focus of today’s conversation, was seeded with issues from the very start. Despite the many tricky elements of this pregnancy and birth, my guest (and eventually her daughter) persevere and create something beautiful: a beautiful baby who grows up to have a beautiful life.
Let’s get to this inspiring story.
P: welcome to the podcast. Thanks so much for coming. Why don’t you tell us your name and where you’re from?
Rachel: My name is Rachel Neve Midbar, I believe living in a Druze village in Israel Cosmosphere right outside of Haifa. And they’ve been living in Israel. off and on since 1983. And originally from Westport, Connecticut.
P: Uh, wow. Wow. That’s very cool. And I know from the writing that you sent me that you have six kids.
R: Yes, six six children. Six pregnancies six birth six living children. Lucky Yeah.
P: So so lucky. I was gonna say otherwise known in the wider world as a lucky duck. And from the piece that I read, it looked like your first pregnancy was pretty young. You were pretty.
R: I got married, we were 21. When we got married, we met when we were 19. And my first daughter was born. I was 22 years old.
P: So let’s just let’s talk for one second about that. So walking into this pregnancy What did you imagine pregnancy would be like?
R: Really, I think that I played with dolls till I was about 14 years old. And then I could not wait to have my first child. I was raised in a pretty abusive home and caring for the dolls nurturing them was my way of nurturing myself. And I missed it very much in those in between years, when there wasn’t dolls and there wasn’t babies, but I naturally assumed that I was the Born earth mother that I would squat and a child would arise like that it would be so easy. And I was shocked that my body didn’t didn’t have it easy. All of my births except for one were emergencies.
P: Wow
R: They were either in operating rooms about to get into the operating room. The epidural already in or already after, like hours and hours of transition labor, going to going to C section. So I had three vaginal births and three C sections. But only one was what I would might term and easy birth. It wasn’t that the doctor was very in control was just him and me in the room and he was very in control like you know, sort of yelling at me. Breathe, stop. Open stop you want if you don’t behave you’re gonna get a tear. You know, like
P: that sounds like an oddly aggressive coach, but it sounds like it worked.
R: I mean, I wonder if I’d had doulas if I’d had a different husband. I’d have different doctors. If I had been allowed to walk around if I if the third pregnancy that I’m going to tell you about birth my daughter was born via cesarean section if that had happened, how am I I had very big babies, but even given very big babies I wonder if I have been allowed to birth a little bit more naturally. If it would have been a little different but you never know.
P: We’re all the births in Israel.
R: All the births were in Israel.
P: Okay. I’m guessing the six kids it was easy to get pregnant.
R: I got pregnant pretty much when I wanted to.
P: Okay, so easy to get pregnant. And and I guess we’ll focus on the third pregnancy here. But generally speaking, where your pregnancy is relatively straightforward,
R: I guess I can answer yes, except for the third pregnancy, more or less straightforward. Some small issues here and there. Maybe more than others, but pretty much straightforward. The third pregnancy was really the third pregnancy was the pregnancy. I didn’t want to get pregnant. I got pregnant using birth control. But I want to tell you the whole story.
P: Okay. Yeah. So walk us through that then.
R: Okay. So I was 24 years old. I had two children, a year and a half apart two daughters after the second one was born, because we were American immigrants. And in in the early 90s, there was an enormous infiltration of Russian immigrants from the Soviet Union Soviet Union collapsed. All the refusnicks, the. Russian Jews who weren’t allowed to leave left and Israel absorbed a million and a half people.
P: wow
R: The Army hasn’t been as needy of guys like my ex husband, who were college educated American immigrants in their 20s were married with kids.
So it was known that if you had two kids, before you turn to the Israeli Government and said I’m here, then you would go in and just do four months of army service rather than serving for long periods of time. And because my ex husband had a bachelor’s degree, he was taken to be a medic, he was being trained to be a medic, and I was at home with these two small babies. Just you know, one was not you know, barely two and the other one was just you know, a little small infant and I was really actually having the time of my life. I had the car to myself everything. The only problem was that after that second delivery, it seems like perhaps a piece of skin something stayed behind. I think that the placenta didn’t come out, whole. I don’t really recall. But anyway, something was there. That every time I had my period, the periods were getting longer and longer and closer and closer together. The thing that your listeners should know is that as Orthodox Jews vaginal bleeding meant that my ex husband and I couldn’t touch each other. So he would come home, let’s say every two weeks from the army, and we were really young. And not being able to have sex was huge. It was just it was just huge. And I just seem to be what’s called in NIDA, this, you know, state of menstruating every single time that he was coming home. It was it was actually the doctor who was who was yelling at me and my second birth I went to him and he said, You need a DNC. And before he, he came to that conclusion, he put me on hormones, and he gave me a diaphragm. Rather than just putting me on the pill. I don’t know why he didn’t put me on the pill. But this was just medical. This was a this whole pregnancy was just medical malpractice from the beginning until the end. So he put me on hormones to see if he could regulate the bleeding with hormones if my hormones had gotten knocked out, because the pregnancy and then he gives me this diaphragm. But meanwhile, we didn’t have any sex. And finally after a few months of this, he said, Okay, you need to do
DNC in Israel. What they do is they put women in the hospital the night before they do them. First thing in the morning 6:30am The five women that are on the ward to go get a DNC and I know this because I later lived during their pregnancy for six months on this board.
P: Wow.
R: So the women would wake up in the morning, go boom, boom, boom, but I couldn’t do that. I didn’t have a mom or a babysitter or somebody to come in and watch these two little babies. And I think I have one of the daughters had an ear infection. So my husband got an evening out of the army. We went to the doctor’s office, his secretary held my hand. It was late at night. And he did a DNC in his office. And he gave me some
P: Wow.
R: Yeah. And it gave me some he was he was he was a real character. Because he was known in Jerusalem he was he was known. So he, he gives me a broad spectrum antibiotic, but even by the next morning, and I only realized that later when I was living on the ward and saw women just pop out of bed. After taking a little nap after their DNC and just getting up and running. I realized I was sick. We’re already the next morning and I was sick the next morning. So say that this happened on a Tuesday. We were supposed to leave that weekend to fly back to the States to be at my ex husband’s brother’s wedding. And I think it was like Thursday night, maybe two or three days later, we went into the hospital. That doctor the known doctor was not there. And so another doctor saw me and He gave did a swab and said I’m going to send this to the lab but you definitely have a uterine infection. Here’s change your antibiotic to this. So we had to cancel and he said there’s no way you’re flying. So we had to cancel the trip to America. And my ex husband then called the Israeli army who said to him, Look, if you’re getting off, if it’s a trip to America to your brother’s wedding, you have a week off. If it’s like stay home and take care of your sick wife, get her mother to do it. And you’re you have to come back to the army and that was that there was like no question.
So I called my doctor to see if he could have influence because Israel is a really small place and everybody knows somebody who can make a call and get something done. And he said over the phone you don’t have a uterine infection. This is the bossy doctor. And so he says come in. So we go into the hospital and the two doctors end up standing there in the hallway of the hospital screaming at each other. And I’m standing there, you know, here I am this. You know, very young, very young and naive woman with two small children husband in the army. And these doctors are screaming at each other and I have no idea. Take the first antibiotic, the second antibiotic. So I went home and we found through asking some people for a private doctor who did his own lab work in his apartment, who worked out of Jerusalem, a very elderly American guy who got gone to Harvard Medical School like in the 40s. And he saw me through this uterine infection took about six weeks of changing antibiotic several times.
And I was in bed the entire time with this husband in the army. It was it was a very, it was very difficult. And at the end, he said to me, he said, Rahel, you’re cured, you’re better, but don’t have sex yet. And here we were, you know, again, whether, you know, right, the young 20s wanting to just sleep with each other. We got home and we were kind of very frustrated because we I felt better and I was better and it was we just wanted to be together. And so we call the doctor back and he said, Alright, look you can have sex, but just be superduper gentle, like, No, you know, no acrobatics, I was like super gentle sex and we were like fine. I put in this diaphragm that the doctor had given me and we and we are together and the next morning I get up and go to the bathroom, and the diaphragm just falls out into the toilet. And it’s like, oh great
P: that’s a bad sign.
R: It’s just what I need. So I call up the private doctor. And he said come in and I’ll give you a shot a morning after shot. So we run right away to his house. He she gives me a shot. I spent the whole night throwing from my greatest work. And then you know, my husband had finished the army by then we were supposed to go to visit the family that we didn’t make it to the wedding so we get on the flight we go to America, and when I’m in America I missed my period. And I take a home pregnancy test and I realize that I have gotten pregnant
Then what happens is the story that I wrote about in the essay that where in my pregnancy was not there was not okay. I didn’t it didn’t wasn’t sitting right. There was like something how it wasn’t like sitting in the right place, and I could feel this tugging. And I was exhausted, which is not surprising to have three kids in three years and my mother in law was getting more and more and more frustrated with me because she was trying to clean for Passover which is like this big. Turning the house over and all the leavened bread, and I was kind of in the way with me and my children. The kids were sleeping in we were all three, all four of us sleeping in a little room in the attic, the attic stairs. Were very steep I was carrying these two little ones up and down his attic stairs. My ex husband had just gotten his first job and he had to fly to Chicago because it was with options trading firm that had an office in in Jerusalem, but their main office was in Chicago. And he said to me, can you just go down to the end of the block and pick up my dry cleaning? And so I put the kids in the stroller and I went walk down to the end of the block and I’m coming back carrying this suit. It’s not and I felt total you know, like a tear. I get the kids inside I run upstairs. There’s just blood everywhere just just a huge hemorrhage. I clean up as best I can I go downstairs and I tell my mother in law
P: Okay. Wait, let’s go a little slower here. This is This is terrifying, right? I must be very painful when you feel a tear.
R: It was it was very painful. It was very scary. But my ex husband was he was not okay. He was he was undiagnosed manic depressive with schizoid affect. I mean he was just and life with him was very tough. And by this time we’ve been married for for four years at this point. And I and I grew up in this house where you really had to take care of yourself. when my mother I told my mother in law I was pregnant. She said what do you need this for? I was like, Well, you know what?
P: is She not orthodox?
R: Yes. Yeah,
P: so isn’t she on the on the baby team.
R: My oldest daughter just went to visit them. They’re in their 90s they’re living in Jerusalem now. And they live right here. Their youngest daughter had has eight kids and each other her kids is having kids and all the other kids that have settled in June, summer all around her. And my daughter said that she sat there in their house for a couple of hours visiting them and just grandchildren great grandchildren were running in and out. Getting a lollipop getting a kiss getting you know, trying to run to the store for your grandma, you know, like so, you know. She is on the baby thing. I think that she I think that she justifiably thought that my ex husband and I had enough on our plate.
P: Okay,
R: that life was hard. Enough. I just got through this illness. And I don’t think she liked either of us very much. I you know, if you don’t say that, what do you need to score? I mean, like unless you really don’t like somebody. Now that I’m divorced, I don’t speak to them anymore. I mean, if that speaks to the kind of relationship we had and my ex husband has completely, he lives with a 60 year old man living with his parents. So
P: it seems like a strange thing to say no matter what, especially in an orthodox household where there’s so much celebration
R: it was it. It was a terrible thing to say the other terrible thing was that when I came to her and said I’ve just had a hemorrhage. I need to go to the hospital. She said, Well, your your your father in law won’t be home until nine o’clock. And I have this little I had I had a 12 year old sister in law that was in the house. And man my two kids. Well, you know, we’re in Queens, New York, what’s called a baby center, right? It’s not like that doesn’t you know, it’s not like you can’t call
P: you are out on a farm. Yeah,
R: right. You know, it’s a medical emergency. What is this like wait for three hours to go to the hospital like
P: I read that and I thought I must be misunderstanding what she’s saying here because hemorrhage does not equal hang out. Right?
R: No, but for her and what was I going to do? Yeah. And also it wasn’t like she said, Go lay down. I’ll go over with your kids. I had to feed them and get them bathed and into bed and then my father in law, mosied in then at 9pm. And we got the car. And she tells me, she worked at NYU Medical Center. And so she said to me, I’m not going to take you to the hospital here in Queens. We’re going to go into Manhattan to the better hospital and I was like, Listen, lady, wherever. Get there, and I was scared to death because my ex husband was very he was very, very, very hard on me. And I knew that if I lost a pregnancy it would have just been a really bad thing in our marriage. Okay, like I would have probably possibly lost the marriage. I’m I think if I hadn’t had that pregnancy hadn’t lasted the way it did. I don’t think we would have stayed together at that point, I think, because I didn’t want to get pregnant. I wanted I needed that break. I wanted to go back to school. I wanted to do a lot of things. And that was already starting to occur to me so I think that I was pushed, you know, getting ready to push on.
So we get to the hospital and NYU Medical Center is like I felt like I had been dropped into the jungles of Nicaragua. The place was packed. Everyone was screaming the bed that they put me on was broken. The floor was covered with blood that there was a female doctor came over to examine me the examination was very perfunctory, very harsh. It was painful. And she said to me, your cervix is closed and I said okay, what does that mean? And she said, well, either you’ve expelled the pregnancy. And if your cervix just closed right back up again, or you haven’t the babies died, but you haven’t expelled it yet. I’ll come out sometime tonight. Or you’re still pregnant and I so I knew that my cervix didn’t just close up again. I just had two babies.
P: Yeah,
R: that that wasn’t that wasn’t wasn’t you know, just asking me Did you see anything in the toilet or anything and I hadn’t,
P: how far along are you at this point?
R: 10 weeks. 10 weeks pregnant? And I had all my children in Israel. I lived on that ward for six months. I watched women come in with excessive vomiting and get a bed overnight, an infusion and an ultrasound. There. Why didn’t I have an ultrasound? Why didn’t somebody give me a blood test? So easy to see if you’re still pregnant or not. They sent me home and we made i They made an appointment for me in Manhattan to get a private ultrasound. The next day was St. Patrick’s Day. Travel with by with a car service because my mother in law was like That’s it. She’s trying to go in the car service the next day to get back into Manhattan. Drink like a half a gallon of water. Get in front of the ultrasound and then I think I and then the office closed and I had to sit on the on the sidewalk in Manhattan and watch the revelers go by for like two hours until my mother in law got into Manhattan to pick me up. Because I was told that I was supposed to be in bed. I supposed to be in bed rest. So I come home the baby’s alive. There’s a placental tear. The ultrasound was like some special machine they blew her up really big and she was like dancing. It was it was this thing that she has done the My daughter is 33 years old today. She has cerebral palsy. And throughout her life she does that. She says something or or does something or succeeds at something in a way that’s so surprising and full of energy in life. She just always like brings me back around. But that was like the first time that she did that. You know, she’s just this exquisite, full color, baby, just vertical and dancing around. It was incredible to see
and there was a tear on the placenta so they told me to stay in bed for two days. And then I could get up and walk around, which was also bad advice. My in laws got got together I went home I got into bed. My ex husband came home from Chicago and they took my loss took him aside and said look, the big holidays coming and your grandparents are coming and your brother and his wife and all their kids are coming. We don’t really have room for you guys. You guys are this is just too much trouble. So here’s $1,000 and go back to Israel and have your Passover there.
P: Wow.
R: I have to say I don’t think that I had a civil word with my mother in law ever again. After that. There was you know, no matter what happened between us. This was like this. The anger that I still carry today that you would do that to any human being
P: right.
R: Tell this tell the other brother to stay home. Tell them you know, double up everybody’s beds. Yeah, but make room for the woman who just had a hemorrhage. So within three days, let’s say three or four days of this happening. I’m on a plane. And the only plane you can get to get into is from from America, Israel before Passover is a very difficult thing. Everybody’s going to Israel for Passover. So we got a flight to Orly and then we got a flight out of de gaulle. And it was Sunday so we had to take two babies, two big suitcases and get out of the plane out of the airport into a taxi into another airport and onto another plane.
P: Rahel, this does not sound like bedrest.
R: No no, no, exactly. So, we we got home we spent one night in our house and then we went to a hotel and we stayed in a hotel for the week of Passover when that was over. We went back to our apartment. And that weekend I started to feel contractions and I said to my to my ex husband I said you know I think by then I’m like, in in week 1314. I said I’m really I think I’m feeling contractions. He said no, you’re like in the beginning of her pregnancy. I said no, no, my son is getting hard. It’s hard. It’s tensing up. It’s getting round. This is a contraction. So we go back to the private doctor, right the one who helped me through and he said you’re absolutely having contractions, your cervix is dilated. He did not have a good enough ultrasound machine to see exactly what was going on. Nobody did here in Israel. Nobody did. Nobody had that technology to be able to see exactly what was going on and nobody really loved and he gave me some medicines take it home but he told me you need to be off your feet. You cannot pick up your kids. You can’t do anything. Well, that lasted like Not at all. My mother came but by the time my mother came within two days of my mother getting there I had to keep he put me in the hospital. He put me in the hospital. I was in my 14th week of pregnancy and I stayed there until the beginning of my ninth month
P: and he put you in there so that he could so he could ensure that your bed resting.
R: I couldn’t I couldn’t not be out of bed. As soon as I got into the hospital. I went under the auspices, not of the private doctor who had the ability to work in that hospital. But the person who was the head of the hospital was the mean doctor who had given me the other wrong size diaphragm. So I right. I was his patients in the hospital. Okay, the other doctor could come visit me to look at my records. And stuff. And what when I had the intersection that the the very smart older doctor had gone and looked at my file and said that the swab that had been taken that night had been lifted out of my file. So we knew that the the meanish doctor was up to up to up to tricks. So the older doctor was going to keep an eye on me he had he had the ability to work in the hospital, but he didn’t want to take over from this other guy because it would have also been bad for me so they kept me in the hospital. I was in a bed where my head was near the floor. My feet were in the air. There’s a word there’s a name for it. And I was allowed out of bed to go to the bathroom. To take a shower a quick shower every couple of days. And once a week to go down to the end of the hall to talk to my little girls on on the phone. Remember, I have two babies at home
P: What let’s talk about this for a second. The tilted upside down does not sound comfortable and to some degree a tear in part of the placenta. it makes sense to some degree to say don’t move and maybe that will heal but do they give you any extended description of why bed rest is going to help you with this
R: All they knew was I was having contractions and they played with my medication. So there was a suppository that they would give me at night that made me sleepy. There was sometimes the pills that the the older doctor had given me those pills that they gave me to take, but most of the time I hadn’t. I had almost all the time I had infusions that was giving me this muscle relaxing medicine and that kept me pregnant.
P: So they’re just trying to stop the preterm labor. That’s what
R; they just tried to stop the preterm labor. That medicine makes your the your resting heart rate 120 beats a minute which pushes a lot of blood to the baby. And usually what they would what they told me and Israelis are so much fun. They all are very they’re very verbal. They I was told that the person who laid in my bed before me the baby, their baby died. I was told that Udipar babies because the name of the drug was up to Udipar. Babies are very big. I was very I was carrying very big. I was for the first time in years having all the rest I needed. I had no if you can imagine this is 1988. But he was born October 88. I had no computer no phone, no radio, no TV. No telephone next to my bed.
P: Yeah.
R: Okay. I’m in a birthing hospital at Women’s Hospital in the center of Jerusalem. And I sat in a room and watch the clouds go for six months. It was very boring. My ex husband refused to bring me magazines and books but other people did. I got visited by any everyone I ever knew. I got to see my kids a little bit not very much. And we had various babysitters taking care of them. Finally my ex husband’s cousin who had kids the same age to took my two kids in and that that was the first time that they were based and fair. There was like a few months there that they were just like abandoned children. And they got through you know, we got we got through. In the beginning of my ninth month. The doctor came into my room and said, Okay, now you can get up we’re gonna take you off the medicine. Laying upside down was uncomfortable in the beginning, but after that I got used to it if you laid me in regular bed it felt uncomfortable, right because it was so long.
P: yeah
R: And then when I got up to walk around the first time, I was super dizzy. I was surprised that I didn’t faint. I mean, it was really hard to get up and actually like leave the hospital leave the ward. They so they said to me get up and you know, walk around, stop all the drugs. And because anytime in your ninth month you can give birth and there was a nun, a Christian woman who had come in she was a midwife, and she was doing a stent in the hospital. And she examined me and she said, your baby’s not big. Your belly is filled with liquid. Now I wasn’t bleeding. There, no blood was coming out of me. But it seems at the end. What happened was that tear never healed.
P: Wow.
R: It never healed and I was bleeding into my uterus, the entire pregnancy. So I got up and I’m walking around and everything and I stopped taking these drugs that are putting giving, making my heart rate so high. My in laws come to Jerusalem to spend the Sukkah holiday the full holiday. And so they’re with us for Yom Kippur. There were this for I’m not sure I don’t remember Rosh Hashanah, but they were with us for Yom Kippur and they were with us for circus and sometimes around circus. My mother in law says to me, you know, Rachel you don’t. He’s like, you know, like, you know, the baby or the baby making you uncomfortable? Which was an odd question. Just an odd question to pull out of the sky.
And believe me, I just wanted to not think about anything too much at that point, right. I’m 25 years old. I just want to have this baby and get on with my life. But when she said it, I started to think you know, wow, it’s true. I’m really not feeling the baby moving. So they took my two older daughters and they sent us back to our apartment to have a night alone. And I got into our bathtub. And I was playing with my stomach and the baby wasn’t really reacting. So we went to the hospital, and they get a monitor and they said the baby’s sleeping. And my doctor came in and told me to go home. And around that time, there was a hospital in Tel Aviv called Assuta some financial room with another person, or there was some help find that dislike position. There’s a 4040 minute drive between one city and the next. So they moved their practices into the hospital in Jerusalem where I had stayed and they were seeing their, their their patients they’re giving, letting their patients deliver there. And when I came back in the My doctor told me keep coming in for a monitor. When I came back in the next day, one of these doctors saw me and he said, You need a cesarean section. And he put me in a bed overnight. In fact, he put me back in the same bed where I had been for six months.
P: oh, Wow.
R: I got up in the next morning my doctor came in. This is the mean this is the doctor who right had been had been very commanding and demanding during my birth. He came in and said go home. And I said well what about with the other doctor? He says no, no, you know and I heard you know with my La leche training my you know, all of that like all that you know, right? Breathe through all your all your deliveries and don’t ever take a you know, so it’s just an aspirin. I heard Oh, a doctor just wants to give me since you know it’s gonna give me a bunch of tests and a C section. So I ran home and we went in every night to get a monitor and every monitor the baby was asleep and
P: we don’t think this is weird at some point.
R: About five days and again, my doctor wasn’t there and another Assumpta doctor saw me and said this monitor doesn’t look okay. Let come into this room and he put me on he laid me down. He put on an ultrasound machine. And he started to zap my belly with little electric thing. Okay, like a taser. Okay, but I’m sure much less electricity. He was zapping me and trying to wake her up. And she’s kept on sleeping. And he said, Listen, you really need to get this baby out of you. Like now. And my doctor came in and said, Rachel, go home, and come back in tomorrow for another monitor. And I said, Well, why don’t you go over and talk to that other guy? He seems to think that I need a cesarean section.
So they the two of them talk to each other and he comes up to me and he says, Okay, we are going to admit you now. We want you to go home to sleep come in tomorrow morning first thing we are going to do labor. I said okay, we go home to sleep. The whole night of like feeling contractions we come in the next morning, the we go into a delivery room and while there went to get the suppositories to induce labor, my ex husband and the the midwife suggests all births in Israel are midwife births and the midwives do all the birthing unless there’s a reason for a doctor to come in. So the midwife is going to do is going to put in the induction and both of them are saying to me, it’s going to be a really long day you’re going to have a really long day. It’s going to be a long birth induction is really hard. You need to eat something so because they asked me to I took a little tiny, itty bitty piece of bread. And she goes she puts her hand in and she says where’s the baby’s head and I said the baby is breech. The baby has been breach the entire pregnancy. I’ve been seen by everyone your doctors, like no one ever talked to each other. She said you cannot deliver a vaginal birth with a baby who is breech. And I was like okay, so they put me in a bed. And then the doctor comes in and he goes and he sits down in the bed next to me. He says all along, I knew you needed a C section. And I said okay, Bozo that’s great. So I said let’s go to C section he says because you eight we can’t give you a C section. Until a number of hours have gone by. So you have to wait until three o’clock in the afternoon.
I said okay, but there’s a doctor who this guy had insisted was at my first two births. And he was the head of neonatology and the shard set of hospital which is another Jerusalem hospital. And I said, everything else equal. I want that guy in the hospital when my daughter is born. And he said, we didn’t even know that she was a daughter at that point, but maybe four and he’s and he said, Well, you know what, Professor Adelson, the neonatologist, his son is having a bar mitzvah this afternoon. So you’re gonna just have to deal with whoever’s in the hospital. And I’m like, okay, just get the baby out of me. So they put me in a recovery room off the operating suites. Right this is a women’s hospital. They’re not doing operations all day long.
So they just put me in this empty room. On a bed where the copy someone went and got me a copy of the Jerusalem Post. And I’m not a big news but I’m sitting on this bed and they did put an infusion in my arm. And one of the other midwives come in an American woman. Now you can imagine I lived in this very small hospital for six months. Everybody knows me knows my story. So she comes in and she had like this like fakie smile on and she says, Rachel, what are you doing here? And I said, you know, Regina, I’m starting. I’m waiting to have such and such but you know, I’m feeling contractions. Maybe I’ll still be able to deliver naturally right? That whole
P: Yeah,
R: mentality to never have a C section. And she said, why don’t we get you on a fetal heart monitor and see what’s going on. So she hooked me up to the fetal heart monitor and turns it on, and the baby’s heartbeat, like within 30 seconds of it going on the baby’s heartbeat drops and doesn’t come back up. So that was it. My daughter died right at that moment. And so she puts out some alarm. Next thing I know, they’re like, you know, 40 people surrounding me surrounding my bed, they get an oxygen mask on me they put the infusion of Hi my ex husband by the way had left after I had the piece of bread and before the midwife realized that the baby was breech. My husband went to get the car fixed. So he had been gone home. He had been gone the whole morning and he walked in exactly at that moment.
They take me into the operating room. They’re tying down my arms. They’re cutting off my clothes and Professor Adelman, the shartizedik neonatologist walks into the room. He puts his hands on either side of my head. And he said I was going to invite your husband and he looks worse than you do. So just give us peace and just give us a few minutes and we’re going to take care of you. And then they put me to sleep. I woke up later, unwilling to hear any bad news because he came to he came to talk to me and I and I he said Your daughter was born with an Apgar of one and I think he was being generous. And I and I just answered him. What was it five minutes later? I wouldn’t. I wouldn’t hear that she hadn’t survived or that there was any bad news at all. And so he left I was after C section. So I was stuck in my bed. This professor Adelman stayed with her that whole night. My ex husband went out to the bigger Hadassah hospitals and got blood for her she had two blood transfusions that night. And that he saved her life. He missed his son’s Bar Mitzvah and saved my daughter’s life.
We were in the hospital for about five days after that. After three days, I think she came out of there just had her in a in an incubator, but I don’t think for any more other reason than to monitor she was about eight pounds. Maybe seven and a half pounds eight pounds. So she wasn’t under sized she was just didn’t have enough oxygen in her blood. Before I left the hospital. Professor Adelman explained to me that her blood oxygen level was on the line between two too low and safe, like right on the line and that we should take her every couple of weeks to the pediatrician. You know that thing that they do when they open up the babies? You know, they check their arms? Yeah, they push the baby’s knees up and then open up their hips.
P:
R: Yeah, but all of that is to feel that the baby has normal, a normal normal tone in their muscles, muscles and bones. And a kid with brain damage won’t. And by the time she was three months old, they felt it we got her you know the first ultrasounds and MRIs and we got her into occupational therapy and physical therapy right when she was really small. And today she’s a 33 year old woman there. She has a certain kind of cerebral palsy. Called nonverbal learning disorders. It’s right hemisphere damage, which basically means that she’s incredibly smart. She can read any book, she can learn any language. She has an incredible memory. And then there’s a whole lot of stuff that she just completely can’t do, like put a car between two lines in a parking space or even to know which foot shoe goes on with which foot without trying. She lives in an assisted living facility right near here. And she’s doing really, really well and she’s a she’s a great, she’s a great lady.
P: That’s an amazing story. And I am so moved by that doctor’s efforts to save her.
R: Yeah. I wish that there had been a book better ultrasound machine and they could have looked and seen that there that care was there the whole time. But even that, even if they had what would we have done differently? And it wasn’t as if there weren’t the people came to me when I was pregnant and said, How? Just get up I think my mother came one at one point and said just go home and take care of your kids. And if you lose this baby, you lose this baby like why are you holding on so tight? I was terrified at the idea and while I was laying in that bed, I had a rolling tape in my head, please God, if this baby has to have something wrong, that it should be physical and not intellectual and that the baby should be able to enjoy your world. That was my prayer. And I just had it on, you know, constant rewind right? In my brain, even when I was talking to people and whatever was going on. I just was constantly constantly had that prayer. And it’s interesting that she she always went to regular school she wasn’t in special ed, she she happens to be an incredibly brilliant person. She can’t survive on her own like, you know, living in an apartment. Whoever she marries, she won’t be able they won’t you know they’ll need all kinds of special support. But she’s a brilliant like is really brilliant. Woman with a very wry sense of humor. This incredible vocabulary, this great desire to know she’s very into politics. She likes the news. She’s She just she just has her a great need to know so much and it’s so much follows what I asked for so I’ve always told her she is my she’s my class in my believing might she’s my you know, like reassurance and belief in a higher power. Because you know that was that that prayer was answered.
P: Yeah, that’s amazing. And so, five days later you leave the hospital and you come home and it’s just….
R: He said you have to do days that I’m giving you back for kids and yeah, and it was just get on with it. My mother in law showed up in the hospital and decided that my daughter should be called Bhatia. My mother in law had a cousin who had polio and her name was Basha Devorah and Basha is kind of the Yiddish way of saying Battia but him means daughter of God and it is known in the Bible is the name of the daughter of Pharaoh in Egypt who took Moses out of the river. Her name was Battia here, and about two or three months after she was born, I went to a wedding and she was in a carrier on my chest. I had a teacher, a teacher who taught me Hebrew Bible, right, a Torah teacher, a very holy woman in Jerusalem, and she was at the wedding and she came up to me and she said, Oh, this is the baby who you worked so hard for.
And I said, Yes, this is the baby and I, you know, showed her the baby and, and she said, What did you name her? And I said, you know, I really wanted to name her NESEA which would have been God’s miracle. A name that by the way, my kids absolutely hate. And every time I tell this story, they’re like, Oh, please, if you’d call her NESEA we would have like killed you. I said, I wanted to call her NESEA and my mother in law I mean, you can imagine how angry I, I am to this day, right? Could I maybe had I stayed for Passover, I would have healed. So the teacher goes into the sort of meditation. She goes into this meditation and she says, you know, if you had called her NESEA God’s miracle, it would have been is if God did one miracle for this person, and then was kind of done. She said, but by calling her Battia, by calling her daughter of God, you know that God will keep doing miracles for her over and over and over again. And that’s really how her her life has gone. Their stories even more miraculous than the one I just don’t feel about the life of bots yet is a very wonderful, it’s a wonderful thing that that had that she survived. She’s just this amazing person
P: that is an amazing ending to this pregnancy and so joyful that she’s doing so well and has had such a full life and continues to have a full life. I’m wondering after that pregnancy, how do we get a fourth.
R: She was in nursery school, and the Rabbi of our town, his his daughter invited us over for a playdate and at that play date she told me she said something like, people like you shouldn’t have more kids. And I was like, why not? Why would you say something like this to me? And then if you recall back in the beginning, I I told you that my kids were my feeling right so having a baby, but not having them every year and a half.
P: yeah, yeah Yeah,
R: so shimmy was born three and a half years after Bhatia. I wanted to have a son and he was a son. And three years later, no, four years later, we had another daughter Kayla, and then three years after she was born, we had son mayor and Mayor was born 1999 I think I would have continued. I had more kids except there was a second intifada. And we went for a few years to live in America and that kind of put the kibosh on having more kids. So
P: I was thinking that your experience with your daughter is pretty scary and hard on you and hard on your family with the bed rest and so to walk back into pregnancy, I just wonder how many of those fears you bring with you about like what if I
R: all of them there at one point I thought I was having a really contractions with shimmy. And I went back to the same hospital that that women’s hospital and nobody would talk to me nobody would touch me. We really considered suing the head of the hospital. But it was known in Jerusalem that this guy was manipulative. They had all kinds of friends on the inside, even with judges and other people, that he was an influencer that he was and that he wasn’t only now practicing on me.
We decided to put our energies into taking care of the baby and getting her all the therapies and whatever else she needed. When I was pregnant with Jimmy, I went back in the hospital one night, nobody would talk to me. And that’s when I went to the second doctor, the one who swabbed me was working by then in a different an old little religious hospital in the center, another area of Jerusalum and that’s where I gave birth to the to the last three was their shimmy. First of all was 10 pounds.
P: Wow.
R: And he was a VBAC in the operating room after they had put in the app. When they went to put in the epidural. I had a contraction and I had been in transition labor with contractions coming every minute for four hours. And when they put that needle in and breathing through the whole thing, and then they put that needle in right when I had a contraction, I let out the biggest scream. And the baby came down enough that he was vaccum extracted.
P: Oh wow.
R: And in the operating room. The next day on the ward. People were like did you hear that woman screaming and I was just like
P: not i Yeah, well good. I’m glad that it was a different road for the rest of them. It is a I had a challenging first pregnancy and then I there’s a lot of consternation at my house about would we walk into another pregnancy after having so much trouble the first time and we did like you we did, but that was a that was a hard step to take and my family who had been really supportive, was super mad that I got pregnant again and ended up being supportive in the end, but the trauma and the difficulty of all the things you went through in that third pregnancy I have a kind of lingering effect.
R: when I was at the end of my ninth with shimmy, and my ex husband was called to do his reserve duty in the army. And I said to him No, no, no, no, no, no, no, no. This time you told the army No, no, no, you’re not going. If he had gone and then was called home, that would have been fine. But because he told them no. The next several times that he did reserve duty he got like the worst duty that you could possibly have in the worst areas. And every time he would come home and say you see see what because I was just a little bit of a wreck. Absolutely.
P: it is like a leap after having that kind of experience to go back into it and have another one but it’s fabulous that your other three nobody else encountered those issues.
R: No, it was there was there was something wrong. I mean, remember I got pregnant using a diaphragm that didn’t fit. Yeah, I got I had had a morning after pill. Yep. When the pregnancy attached itself it didn’t attach itself well. And the only reason Battia survived is because she is the most tenacious person I’ve ever met in my entire life.
P: I like that consistency from 10 weeks when you see her the ultrasound to 33. Right. Very cool.
R: I’m gonna I’m gonna leave you with just a very brief story. She is in seventh grade. We’re living in America. I’m working for a hedge fund. The hedge fund manager is one of the real big, brilliant Wall Street guys totally under the radar. Most of the money that he’s trading his own and we are for people trading $600 billion and he has a big interest in medical devices because his father’s a doctor in a well visit. Battia’s heartbeat is heard and right after we got to America and she was having so much trouble because here in Israel, it’s really easy to streamline the special needs kid and in America. It’s so much more difficult, especially in the Jewish world.
So we get to a well visit and the doctor hears her heartbeat and says I hear something wrong. And she gets hysterical and I said don’t worry about it. Your father has a heart murmur all his family don’t even think about it. That spring I go to Him and ask Him to fill out forms for her to go to summer camp. And he says Did you ever take her to the cardiologist? And I said no. And so we make the appointment of the cardiologist. I can’t go you’re not you know, for people managing $600 million. You show up at 730 You leave at 530 in the afternoon. And you do not move from your desk. So my ex husband took her to the cardiologist and he came to pick me up and he was like crying and he said Bhatia has a hole in her heart. About 25% of people like the baby’s head is open here. That the heart is open and it doesn’t 100% Close. It’s called an arterial septic defect. Well that day at the hedge fund the boss had come over to me and said these are the kind of companies we like to look at that you should keep your eyes open for and it was like in the middle of the afternoon like 233 o’clock and I was really tired. So I just started to go through and I opened up the first company in the file, and I opened up and it’s this company that had made a medical device. It used to be that you had to have open heart surgery and crack the chest, open the entire heart sew up the middle and then put it all back together again. This guy had come up with a going in through an artery in the groin. snaking a laparoscopic tube into the heart with a little camera on it. Take a picture that measures exactly the size of the home. And then they have like a whole box of like these little umbrellas, the close they take the tube out the screw on the right side Sunbrella they sneak it back in and right between a heartbeat they put the umbrella through open it and unscrew it and pull the laparoscopic tube out and the umbrella material creates heart muscle to be just to grow.
P: holy crap…wow
R: so that afternoon I’m watching this little video of how there’s an operation that afternoon while by the neurologist I’m watching this video of this new thing that had just been developed. There are only two doctors in the United States doing this procedure on children, the guy who developed it and he’s in New York and the guy at Children’s Hospital in Boston. So we call we go to the doctor I had great insurance. I worked with a hedge fund. We go to we call this doctor I said yeah, I’m working at this particular hedge fund and he says Oh Can we roll out the red carpet for you because it was my boss that gave all the money to develop this. This thing now that they do it everywhere today. Okay, but there then it was brand new. And I get in the car my husband’s crying Battia has a hole in our heart. I’m like it’s no big deal. They have these like little umbrellas. So you can imagine I thought to myself afterwards, you know she went through the surgery. She was overnight at Columbia Presbyterian. She’s back at school two days. Later.
P: Yeah.
R: And if you can imagine, I thought to myself, I must really God must really love me. Who does that for a mother. Like gives him the information first?
P: I agree. I agree. All I could think was daughter of God. Right. So well named. That’s it. That’s amazing. And I’m glad that was fixed.
Thank you for sharing your amazing story.
R: thank you for having me This was really wonderful.
P: As suggested at the front end, Rachel’s is a story of resilience and toughness…to manage the infection after the second pregnancy, the hemorrhage during the third pregnancy, the placental tear, the months of bedrest, the uncertainty around the timing of the birth, and then the C section seems like a steep uphill climb…to manage all of that at a pretty young age, and then to have three more children–I think of it as a story of unvarnished strength that includes both heroism, kindness and medical intrigue…thanks so much to Rachel for sharing it…and thank you for listening.
Episode 45: Babies that began with a Dream: Julia’s Story
Episode 45 SN: Babies that Started with a Dream: Julia’s story
Pregnancy involves massive changes and for some of us, one of the first hurdles is overcoming issues that have developed in our bodies that make getting pregnant and being pregnant difficult. On the road to becoming pregnant, today’s guest learned that she had endometriosis, an issue that she’d painfully lived with for years without a diagnosis, and which required surgery before a pregnancy could develop…and after the first child, the number of physical obstacles seemed to grow more numerous–more endo, a bit older, a shorter menstrual cycle, a medical community that was suggesting that pregnancy was unlikely again…but today’s guest’s story should remind us to never bet against mother nature…
You can find Julia’s writing here
You can find links relevant to Dr. Jessica Drummond:
Outsmart Endo Website: www.outsmartendo.com
Schedule a Strategy Session with Dr Drummond: https://outsmartendo.myshopify.com/products/initial-consultation-call
We also set up a 10% off coupon for folks who listen to your podcast and want to set up a strategy session with Jessica.
CODE: WARRIOR10
Type 1 diabetes and male fertility
https://www.diabetesincontrol.com/the-effect-of-type-1-diabetes-on-male-fertility/
Chemical pregnancy
Audio Transcript:
Paulettte: 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.
Pregnancy involves massive changes and for some of us, one of the first hurdles is overcoming issues that have developed in our bodies that make getting pregnant and being pregnant difficult. On the road to becoming pregnant, today’s guest learned that she had endometriosis, an issue that she’d painfully lived with for years without a diagnosis, and which required surgery before a pregnancy could develop…and after the first child, the number of physical obstacles seemed to grow more numerous–more endo, a bit older, a shorter menstrual cycle, a medical community that was suggesting that pregnancy was unlikely again…but today’s guest’s story should remind us to never bet against mother nature…
I am also including the insights of a functional nutrition and integrative women’s health expert, the founder and CEO of women’s health initiative who focuses on endometriosis
let’s get to this inspiring story.
Hi Thanks so much for coming on the show. Can you introduce yourself and tell us where you’re from?
Julia: I’m Julia Motyka. I’m from Western New York. I’m from Binghamton. I’ve lived in New York City for quite a long time. So
P: that’s nice. Let’s talk about family. Do you have siblings?
J: I do. I do. I have a younger brother who is about four and a half years younger than I am. And then I have what I like to call my adult onset family. My mom remarried when I was in my 20s Until I wound up with four additional step siblings. But we have a unique relationship because we didn’t grow up together. We kind of pal around at the holidays and have this kind of regard for one another as kind of slowly chosen family. But but my my deepest sibling relationship is with my my biological brothers
P: and coming from that setting. Did you think oh, I’m definitely gonna have a family.
J: Gosh, you know, I mean, it was a complicated journey for me. My family history was sort of thorny as a child because my my parents are wonderful and complicated. And I’m a product of an early divorce couple. It was a very acrimonious divorce. And both of my parents went through sort of long road towards becoming who they are now, in some ways, much changed from when I was a kid. And so when I was in my teens and early 20s, I wasn’t sure that actually having a child in any way particularly a biological child was going to be right for me. I also have an illustrious history of mental illness in my family on both sides, and have been a primary caretaker to my father, who was sick in my late teens for a while. So there was a period of time for me where I looked around and I said, you know, maybe this genetic line doesn’t need to continue. Maybe we’re okay. It’s okay to just finish it here. And I wasn’t sure that I needed to do any more caretaking to be honest. But there was a moment or a series of moments, I suppose in my early 30s I was partnered with my current husband. And he really deeply wanted children. And I felt wasn’t a sense of negativity around it, but I felt profound ambivalence. And I started to really consider why that was the case and unpack my own family history and sort of intergenerational legacies of mental health challenges and I started to have these dreams of a little girl. Big, big dark blue eyes and like a mop of curly dark hair, and the dreams were very strong. She was always about 18 months or so. And I would always wake up and feel like the imprint of a body on my body.
P: Wow.
J: And if they came every it was like it was over the course of over a year I would have some sort of instrument. And then one night I had one of those dreams and I woke up in the morning and she’s with me all day. Like my little silent passenger. She’s my constant companion. And I from time to time would work as an audiobook narrator so I was recording a book a day, and I was in the studio. And I was about halfway through my session and she vanished. The film doesn’t disappeared. Whoever she was, she was gone. And for the first time, I felt this enormous space of regret open up inside my body, and I thought oh, I don’t attempt to become a mother somehow I will regret this. I will regret it. In a way that I hadn’t experienced before. And I wasn’t sure yet at that time, how motherhood would come and how we would proceed but I knew it was something that I wanted to watch for and so we did. And so that’s already
P: that’s amazing to have a feeling of pre regret.
J:Yeah, it was really it was like it was like advanced regret. Congratulation. It’s like, you know, I’m that deeply Jewish. Regret in advance.
P: I see you I see you and I’m applauding. That’s well done.
J: Very good. Thank you. It’s like it’s a show it’s a special show.
P: So when you guys decided to get pregnant, what are you imagining pregnancy will
be like,
J: you know, to be honest. I always assume, hahaha. That it would be like falling off a log. I was like, you know, I’m healthy. I’m like, I’ve been practicing yoga. I’ve got I’m really aware of my pelvis. I’ve got a Kundalini I know what it was like and like, it’s like I’m I’m available to myself. And I like to think of myself as being very physically aware. And so I was like, it’s gonna be great. And if it didn’t, wasn’t great, it wasn’t easy. And it started to take us quite some time. And initially, sort of like, wow, that’s just the right baby’s gonna come. I got very woowoo about the whole thing. That all came from a dream so why not?
And then it was almost two years after we decided to start trying to have a baby, that we ultimately decided to see a fertility specialist. Now again, you know, Pride goes and all of that. So I and my husband both assumed that it would be an issue of his because he’s a lifelong type one diabetic. And so we were like, well, you know, with many type one diabetic men sperm count can be an issue there. There are all kinds of complications that come with that particular chronic illness. And so we both thought, probably that may be the case.
P: so, Real quick here. type one diabetes is an autoimmune condition that affects someone’s ability to produce insulin and you’ll want insulin to help move sugar from your blood into your cells. Without it you leave too much. sugar in the blood and not with the cells which is required for energy. Having this condition can affect the process of sperm development in men and sperm require a lot of energyto be good swimmers, and this insulin issue affects their ability to do that.
J: And lo and behold, we both got checked out so I’ll go to I’ll get checked out to why not. And they did a vaginal ultrasound that was wonderful. In New York City that we went to, and within about 45 seconds, finishing the obstetrician went, Oh, well, there’s your problem. I have Excuse me. We have a you have a huge endometrioma eclipse in your left ovary and I and I had never heard that term before. What what is that? What do you mean to describe an endometrium? It’s technically but it’s really just a sort of a stack of layered endometrial tissue of uterine tissue that has grown outside of the uterus. And he said, well, that we’re gonna have to remove that. And he said, Do you have endometriosis? And I said, Not to my knowledge. And he said, Well, you intend to have extreme pain with your period. I burst into tears.
Now, the backstory of that is that I had gone to multiple doctors for decades, with unexplained extreme pain during menstruation. I had sciatic pain I developed nerve pain in my back, I would have to sit down in the aisle of the drug store in the middle of a cramp. In order to not lose control of my legs. Sometimes I had a really severe pain, but it had been dismissed and dismissed and dismissed to the point that I just stopped mentioned. And kind of forgotten about it completely. Just kind of was living with this debilitating pain every month. And so when asked about, Oh, I’m so aware of my body and yet decided to numb myself to this incredibly important piece of physical information that I received month after month, because everyone outside my body had told me it was nothing.
P: we are lucky to have the founder and CEO of integrative Women’s Health Institute on our show, Dr. Drummond, thanks so much for coming on. So why don’t you tell us about your training and your institute?
Dr. Drummond: Sure. So I started my career a little over 20 years ago, my initial training is as a physical therapist, and I practiced you know, pretty direct hospital and clinic physical therapy for many years more recently got a doctorate in Clinical Nutrition, and also became a board certified health coach and about, like 12 years ago, started the integrative Women’s Health Institute as a training school for my colleagues to learn about functional nutrition in women’s health and we also have a flagship Women’s Health Coach certification, which is the only health coaching certification that has that third party Board approval in the world that focuses on women’s health. And so I’ve been doing that for quite some time now and I also maintain health coaching and clinical nutrition practice around pelvic pain and endometriosis.
P: So let’s start with some basic stuff. Can you define for everyone what endometriosis is?
Dr. Drummond: Yes, endometriosis is a disease process where you’ll have these lesions that are made of tissue that is very similar to although not exactly the same as the tissue that lives the inside of the uterus, and that’s called clinical terms, the endometrium, which is where it got the name used to be thought that these lesions were a consequence. of what’s known as retrograde menstruation, meaning that the menstruation was are going into the body instead of out of the body, and that the endometrial tissue was growing and kind of forced growing outside of the uterus. But that theory has been pretty strongly disproven in the last decade or so. And it’s not fully known sort of where these lesions come from, if you will, but there is a genetic component to about 10% of people with uteruses around the world have endometriosis. And about 9% of fetuses, female fetuses or fetuses with uteruses have endometriosis at birth. So these lesions exists in about that 10% of the female population throughout life so there’s absolutely a genetic component, but there’s also an inflammatory and very likely autoimmune component. So it’s a multifactorial disease in terms of how it’s expressed. And it’s tricky because there’s staging of this disease in terms of extensiveness throughout the body and severity of the lesions, but that doesn’t very well correlate with symptoms. So people can have a lot of endometriosis everywhere and have very little symptoms. They may not even know they have it unless they’re struggling with infertility or they just simply may never know they have it. And others cannot, you know, maybe when the surgeon goes in to remove the lesions, doesn’t see a lot of lesions, but a person can still have real severe symptoms.
P: had they done a vaginal ultrasound before the last
J: time I had gone to the to the OBGYN specifically for pain. They did do a vaginal ultrasound there were no endometrial like at that time. So I don’t necessarily fault the doctors that didn’t know what to look for or how to look. But I do have a large finger wag for the the kind of culture of women medicine that has spent so much time pretending it doesn’t exist. Just that
P: Well The dismissal is so frustrating.
J: Yeah, it was it was just it. I mean, I was told repeatedly, right? Well, you probably just have a low pain threshold. Some women just have more painful periods. And I’ve been moving because I’m slight build. I’m tall and I sort of i It’s not that I present the trail. I’m quite strong, but I presented really, I suppose. And so people would look at me here about my painting. Now this is probably just a look, she probably the truth was I was in horrible, horrible, horrible pain. And I will say that on a pain scale, right? This is the reason we have a subjective pain scale because it shouldn’t matter if my seven on the pay scale is your tooth. I’m still at a seven. And it’s not for anyone else to judge what that seven does or doesn’t mean about my strength. It means nothing. You know, so the basis for their statements I take issue with
P: I brought this issue of dismissing pain to Dr. Drummond: maybe we could talk about why it’s so hard to diagnose exactly or why women’s pain is being dismissed and whether that’s like a larger cultural thing or something specific to endometriosis.
Dr. Drummond: Yeah, so that’s absolutely a larger cultural thing that women’s pain is just generally dismissed. In fact, the word hysteria essentially comes from someone you know you’re crazy if you have a uterus, right? That’s Mr. His means uterus and Latin. And it sort of points to how women are perceived in general when it comes to pain. This is significantly worse in women of color which is problematic the patient you’re talking about right now is her experience around it’s normal to have painful periods you’re fine you’re probably this sensitive to pain we don’t see anything is extremely common as an initial response and fact even now, so I’ve been doing this for just over 20 years, and it used to be 15 years diagnosis when I first started, and now it’s still pretty bad. It’s 12 years to diagnosis.
J: Ultimately, right upon receiving the diagnosis, good undergo a surgery and then for hours, it’s usually about a 30 to 45 minutes surgery, and mine took four hours. It turned out that I had five endometrium between five and seven centimeters in size. And they eclipsed one of my ovaries one was attached to my bowel one was attached to the outside of the uterus and they were everywhere for my pelvis. I also had two small fibroids and I had scar tissue that was so profound that it was completely burying and occluding one of my fallopian tubes.
P: It’s great that there are things you can do to put endometriosis at bay like surgery, I brought this question about efficacy to Dr. Drummond. So Julia had surgery to remove her endometriosis, and I’m wondering wonted like the tissue lining of the uterus grow back.
Dr. Drummond: Maybe it depends on a couple of factors. So when I first started doing this, the kind of surgery that was done was called unit was called ablation surgery where they would like burn off the lesions.
Fortunately, while this is still done, but it shouldn’t be if your surgeon says they’re going to do ablation, and out of that office, so what you want is excision surgery where they actually cut out the lesions in the same way that cancer sort of cut out and the better of it is cut out the roots. Now there are times there’s a kind of endometriosis called Deep infiltrating endometriosis that again, cutting it out is key, but sometimes that’s not fully possible, sometimes even with great excision surgery. Just like with great cancer surgery, it grows back sometimes sometimes the surgeon just missed an area where maybe they didn’t see it. It was too small and it grew in another place. And sometimes they just didn’t see it yet and it grows in another place. So but what I would say is that in the first half of my career, I commonly saw people who had 15 endometriosis surgeries like just a surgery every year and they just kept going and burning it off trying again, you know, now I work primarily, you know, my clients and patients primarily see excision surgeons I even either see them after before and after, ideally, if they have surgery, which isn’t always appropriate varies, but a lot of the time it is and that you know, I might see someone with a maximum of maybe three surgeries in the lifetime, but it’s much much more common to see just one surgery.
J: So I finished the surgery, and I was told that even with the surgery, our odds of becoming pregnant naturally were relatively. I was 35 at the time and I remember kind of lying my bed in the in the week after the surgery, sort of it you know that semi lucid but I was sort of taking my my pain medication and sleeping a lot and I was thinking a lot about the women in my family who I referenced before who had struggled mightily with mental illness and and I had this sort of strange experience where I felt like they had kind of like I had cleared a pathway. And it was as though one of the kind of historic pain of the women in my family has kind of been excised along with these sort of lumps of tissue. And so I wonder what would what would happen and at the same time, we went to an adoption fair and we started foster care paperwork and I said, Listen, however your child, you are welcome. And we decided to do four rounds of aid and insemination, four rounds of IUI
P: let me say one thing here about the doctors predictions? Who would prefer a world in which the doctor said well, we have our averages. On average, women are 35 and have endometriosis and the husband has diabetes on average. It is harder for those couples. We do not have a crystal ball and we cannot predict what will happen in your case. So we can give you the average and then you can make your own conclusion but to say you will have a hard time frustrating right because those all words have effect right? So
J: yeah, yeah. Well and it creates a situation in which you feel like you’re kind of living out a preordained path, right like, oh, we will have a hard time we this will not work or and I wonder for how many couples or how many, how many people seeking to become parents. That’s the end of the story. Because they take that word, and go okay, well, I guess we tried that of canoeing on their own path in your own way. So for us, I didn’t feel ready to completely let go of the idea of biological motherhood, but I also felt that was important to kind of look at it as I’m a firm believer that there are many, many, many ways of becoming a parent in this life. And you get absolutely the right child, no matter whose body they have originally come out of. So we went to the adoption fair and started I went to the first foster meeting and started reading all the paperwork. Meanwhile, we did our second IUI attempt. And about five days after that attempts, I kind of had this feeling of like, I wonder feels a little I just feel a little something. And I thought you know, don’t delay.
But lo and behold, about a week after we started our foster care paperwork, I turned up pregnant. And after all the difficulties in becoming pregnant and in finding our way toward pregnancy my pregnancy with my first child was really just juicy. It was a good a really peaceful time in my life that I had profound nausea. I was not it was not so fun at different moments, but it was an uncomplicated pregnancy. We decided not to from the sex of the child, but we didn’t know who we were going to get through this common. We have picked out a name for her for the baby and for on and on and on. Everybody thought it was a boy, the girl who improved and then the day before her due date. I went into labor and I went into back labor and had really like a 36 hour saga of of childbirth
P: before you get to the birthing. Let’s talk for a second about what you thought it would be.
J: Oh, yeah. No, I pregnancy I actually thought that my pregnancy would feel weird to me if that makes sense. Because it’s such a strange thing that happens in the body. But what I ultimately wound up feeling was was it felt very, very natural to me to be pregnant with my first child. The second child has a different story. So that was intense. But the first child I was like this was I was I was designed. I felt really easy in my body. I’m the kind of person who I always have 12 different things happening. I do a lot of different things in my life. And I like it that way because my mind tends to function best when I have a lot of different things spinning in the air around me during the pregnancy. It was one of the first times in my adult life where there was nowhere else I wanted to be. There was nothing else I wanted to do. I was content to just be in that moment growing that baby. It was a profoundly peaceful time.
I really didn’t expect that it would feel that way to me. So when it came time to have the baby to birth then I went into it actually thinking it would feel easy. If no birthing I had like I had been like sitting on my birthing ball and bouncing and moving my pelvis and I’ve gone to prenatal yoga and I was like I was really I was ready. I pelvis is ripe, it’s blossoming flowers. Great. And then the labor actually began really awful. Because we were we were set up spine to spine. And it was very tough. There was a there was a lot of vomiting. There was a lot of labor began really fast. Slow back down. I had a really supportive birth team. My husband was deeply supportive. I had a doula who I treasure who really had that was a seasoned person in the birth world and was able to kind of help continue to shepherd me through the challenging moments and my obstetrician was also remarkable was was deeply patient and present with me and ultimately manually dilated my cervix a few times and in the sort of the continued hope of avoiding a cesarean which we ultimately did a voice which had been my hope so it had I had planned for an unmedicated birth at a birthing center and we wound up at about our 32 transferring to labor and delivery so that I could receive an epidural.
Ultimately, interestingly enough, the epidural was what allowed my body to relax enough to let the baby down. So the baby was was born vaginally after 30 Almost exactly 36 hours like 36 hours and 10 minutes. And she as she was coming out of my body, the doctor said and I because I had the epidural I’m very present for this time. She said wow, that’s a lot of hair that the baby has and I kind of laughed and sometimes I wonder who she is who they are. We didn’t know the shoe yet. As the baby was being born, my doctor said hey, we get your baby and helped me kind of move the child onto my chest. And there was this big mark of black hair. Turned curly almost immediately. And these huge dark blue eyes looking up at me
P: goosebumps! Goosebumps! Wow oh my god,
J: and so the baby and my dreams had always been named as me and of course no that is a child thing. And she always had to be she waited for him, which I’ve always been really grateful for because it says special gift for me to get to be her mom. And then we thought that was it. We thought we toyed with the idea of a second child. You know, I had been told once I started menstruating again, it was sort of the definitive pronouncements as the medical industry here. I had been told by several doctors that that the year after I started menstruating again, was the most fertile window in which I could become pregnant and after that year, it would probably become difficult or you know, if not fully improbable. So about 14 months after I had Esme I started menstruating we were like okay, let’s do this. Let’s make this happen. And nevermind that I didn’t feel ready. Nevermind, nevermind that my child didn’t feel it. None of us were ready to do it. But we decided to go ahead and try and very quickly. It turned out that my left fallopian tube had occluded again, that it was no lot that nothing could pass to one side. You know, I was 3738 something like that. I don’t remember anymore now, but I was getting older.
P: it’s occluded…It’s because of endometriosis. Is that what’s going on? Okay.
J: Yeah, I mean it had been buried in scar tissue and even though they again there was no scar tissue evidence if the tube is so small I mean if you consider consider like Angel Hair Pasta right I mean, teeny tiny. And so it doesn’t take a lot of pressure to clamp it down.
P: This is starting to sound like a design for all of us.
J: Really, I mean, you would think given how long the the human race has managed to survive that those tubes would be a little more resilient and maybe they are I guess maybe if you consider the other things they undergo. But a scar tissue is not an easy thing.
P: I interviewed a reproductive endocrinologist and she said something like fallopian tubes if you look at them the wrong way. Just they collapse. So I feel like you’re our assessment here. is validated by someone who has seen them.
J: Yeah, that’s really thank you. That’s useful to know.
You know, we talked about it and at the time, my husband was really in favor of pursuing IVF which we were told had, we had about a 20% shot at a baby with IVF and I sat with that idea for a while and I have friends for whom IVF have been extraordinary, who have beautiful families I have absolutely I champion it. I think if it’s the right choice for you. It is a fabulous choice. It was not the right choice for me. I had a lot of anxiety. I’ve had some hormonal imbalances in the past, and I just didn’t feel I didn’t feel good about making that choice for my for my own health. And I already had one child that I needed to be present for. And so I decided not to do that. And it was an extremely challenging time in my marriage. I think my partner my husband felt at the time that I was kind of that it was it was sort of my way or the highway in a certain sense and and it was being my body it was and that was very hard for him to feel he had no agency and also hard for me to feel that my body was somehow secondary or not. Well, my feelings around my body were not valid because they they negated something for him. It felt like and until we let it go. He traveled a lot. I worked a lot I spent time with our daughter. We kind of found our way back to each other.
And then fast forwarding to the spring of 2020 where we all we all know what happens in the spring of 2020. And my little family of three left the city as we were privileged to be able to do and then time in a country house for about seven months. And a couple of months into that time. My daughter started talking about wanting to have a baby I very famously she and I had a conversation. She was just about to turn four and she said I want a baby baby sister. So you never know but she said how could we get one and I said well, you know some people have a baby. Daddy has to give put something inside of the mommy. I sort of got like a about it. I tried to be clear without being too detailed because you She wouldn’t have been interested anyway, was a pause. And she looked at me and said, So you and daddy would have to do something together. Give me something and I Yes. I said, I didn’t don’t see that happening. Well, you never know. There are other ways you know, maybe some people adopt a baby and then for days after we talked about adoption, she wandered around the house like slapping her hands together and rubbing them together going. Now we’ve just got to find that baby. We’ve got to find that baby. How are we going to do it? We’re really be looking around.
And so my husband and I, in some ways, because she was so deeply he started talking about adopting a child in the midst of that time. I mean, I haven’t really told this story line up this way before. It’s a bit of a saga I’m discovering. In the midst of that time, I discovered that I have one of the linchpins of disorders, which basically means that I have several cancers that I am genetically predisposed to. I have a genetic anomaly. My mother has it. My brother does not and I do as well as my mom. And it comes with up to 48% chance of uterine cancer and a 30 some odd chance of colon cancer. There’s some gnarly ones in there. The uterine cancer issue was particularly concerning to me because my endometriosis, right? Uterine cancer is actually cancer of the uterine tissue is cancer of endometrial tissue. And so given that mine grows all over my body felt like a problem.
P: yeah, that feels threatening
J: yes, it feels threatening…So I received the diagnosis. Not really threatening, it felt like why why roll the dice in that way. And when when there’s a part of my body that I can potentially just remove and remove therefore remove the threat or largest so I started to plan for a hysterectomy. And I currently you know, I was at this time I was 14 was the summer before I was turning 41. And my menstrual cycle was only 22 days long. And my one fallopian tube was occluded. I was starting to have more severe pain again with each cycle. And I thought we know the baby maybe better to let this go now let them be all girl off into the sunset or a little party or something. So I was in the midst of making that plan and starting to identify you know, with COVID When were they going to do start elective surgeries what who did I want to do this and talking to my OBGYN who I like, like and trust and in the midst of that I missed my period and I thought that’s weird because I my periods come close together but they don’t I don’t. Initially I had done a lot of head standing in my yoga practice and I also an intermittent yoga teacher. So I’ve been teaching inversion practice that week. And it’s like well, sometimes when I’m upside down a lot, you can alter my menstrual cycle a little it must just be head standing in my trades doesn’t come like four days that I just never missed. I never miss it. It’s never it’s never been a skipped. I’ve never I’ve never been willing to skip through periods. And so four days and I thought gosh, stress, hard years pandemic you know, maybe it’s perimenopause, maybe I’m just going into menopause early.
And then two nights later, I woke up at three in the morning. I thought God I want a bowl of cereal. And I and I went I lay in bed. I thought to myself Is it possible that I could be pregnant? I did the math and listen, I don’t know about your house. That’s the pandemic was not a sexy time. Not was not like, wasn’t like let’s get it odd. No, there was really like one opportunity that month and it happens to fall. Technically after I should have ovulated even on my shortened cycle. But I did the math and I guess conceivable it’s possible, but come on. It’s so unlikely and so I didn’t even tell I didn’t tell my husband I was like I can’t open up this can of worms again. I can’t I can’t pain that we went I can’t do it. We won’t survive it. And there’s nowhere for us to go. We can’t like…we’re trapped in this house together. And so, made up a story about needing plastic bins. Like I need to buy bins, I need to go buy bins and he said, you know, middle of a pandemic Can’t you just order those on Amazon and I was like no, no I need to see them. I need to go to I need to go to Staples. See the bins. I got in our little car and I drove to Staples and I bought some beer and I didn’t see and then I pocketed a home pregnancy and I purchased that she didn’t steal it but I took home a home and just to be clear,
I got home and I woke up at like 5am for a bowl of cereal and to pee and lo and behold it showed up positive and I looked at it and I thought well you know it’s going to be a chemical pregnancy it’s going to be ectopic there’s there’s just no way but I did at that time share with my husband I said you know I woke them up. I poked him he sleeps with if we put earplugs and earplugs and a face mask. He sleeps like he’s at a spa. And so I let you jab him hard to get them to wake up. So I’m shaking him and he pulls the mask off and takes the thing out of his ears. And he looks at me like what your problem was that I have to tell you something. And he looked at me like what could you possibly have to say a 515 in the morning? And I said I’m pregnant. And he just started laughing hysterically. And then he looked at me and he said shut up and we started and we just sat there staring at each other for a few minutes. And then we decided we would tell no one because it was probably not viable. drove into New York City and had had kind of done all of our resident testing and quarantining on a way to see our our respective parents so that our daughter could see her grandparents for the first time in a while. And I was dropped off at my doctor’s office secretly, so that I could be checked. And lo and behold, I my OB even said, she says, you know, the odds of this being viable are very low. And if it was like, I know, she said, we’re talking needle in a haystack. And I said, I know that no one’s getting your hopes. And she’s
P: Let me ask you a question, been so confusing you know, you have all these issues that should stymie your ability to get pregnant. All those things. This little guy, this little zygote has made it past all those barriers. So why do we think the pregnancy won’t last?
J: Well, we didn’t know yet that he had, because there are two ways in which the pregnancy could have shown a positive and been non viable, right. Initially, the pregnancy could have been a topic it could have been outside of the uterus, which given the state of my fallopian tube was was not unlikely necessarily, and it could have been chemical which given my age was also a possibility. So until we did the ultrasound to check and see that there was actually somebody cooking in there. There were still there were still a couple of variables that left it uncertain.
P: so I didn’t know what the chemical pregnancy wasn’t having a look at. According to the Cleveland Clinic. It’s basically a pregnancy that ends before five weeks, and embryo forms and might even embed in the uterine lining, sending out speaking of HCG, the hormone that indicates a pregnancy is present HomeKit but for whatever reason, the embryo stops growing and ends in a miscarriage. It’s referred to as chemical because the HCG was the only sign of its existence. It’s too early to see it on an ultrasound. You will be more likely to run into one of these types of pregnancies if you’re doing IVF because we’re being monitored so closely.
P: I wonder if your cereal test is also a factor here. Would a chemical pregnancy make you have
a craving?
J: I don’t know. I don’t know. You know, that’s an interesting, that’s an interesting question. And to be honest, in those early days of the pregnancy, I was so convinced that it was on that it was not going to be viable. That I didn’t. I didn’t question I didn’t look to the positive because I was so I think afraid of having my heart broken. So I didn’t I just didn’t even entertain it. I was like, There’s no way. This is unlikely. What whatever. And I was I was wrong. Right? So we did the vaginal ultrasound and it showed a very healthy, early embryo sort of little little back of baby and a little sack of placenta embedded very helpfully in the uterine wall. And my OBGYN looked at me and she smiles and she said, she said if you’ve been back in two weeks, and we’ll check the heartbeat, she said this looks really good so far. Is that includes your heartbeat in two weeks. Chances are April, we’ll have a baby.
P: Wow,
J: baby is someone who really wanted to be here. And I said yes. So two weeks later we checked there was in fact a heartbeat. And off I went into the pregnancy now to ask her about the first pregnancy. I will say that the second pregnancy my expectation had been that it would be very similar. I’m going to feel peaceful, I’m going to feel grounded and good. My body is going to feel good. I felt like like shit on a stick. I felt really bad. For the whole pregnancy. I felt miserable. I felt conflicted and I felt anxious and I felt tired. And I had kind of gotten into a space where I was peaceful as the mother of one child and who am I to look like a miracle look at a miracle in the eye and that really messed up my life here baby. But he that I felt what i felt like i The time had passed and I had moved on and I was doing all of these other things. I didn’t want to go back into the sort of deep absorption of a new baby and I really cherished and still cherish the deep relationship my daughter and I have and I don’t know that I want a triad here. I really like that we are a dyad that’s important and something right about it. And then I had a series of pregnancy complications I had unexplained bleeding at around 11 weeks turns out to be something called a sub chorionic hematoma, which is basically just a pocket of blood inside the uterus that lends itself out. And if it is often not threatening to the baby, it doesn’t always resolve but it required almost six weeks of bed rest and having listened to another of your podcasts, I know that bedrest can go on for a whole lot longer. But I shudder to think about to be honest, but it just kind of everything added to the feeling of unease and anxiety that I had.
When we did an ultrasound in the midst of all of the bleeding the baby was was doing actual little backflips. And so he was fine. He was imperturbable good to be unflappable, it’ll be a really it’s a swimming around. What’s this other liquid who cares? So, six weeks on bed rest, under a pelvic rest. I could do like movements that really was meant to stay chill. And then it resolved and I did ultimately have a home birth with the second baby.
We talked a lot because of COVID. Initially we talked about what the different issues were in a hospital. Birth setting. And so my OBGYN who had delivered my first she was actually she no longer delivered babies. But she said, you know, listen, if you were a person who chose to have a home birth, I might be willing to make a special guest appearance.
P: Wow.
J: And come on over. So, so we found a midwife that I that we really responded to that also knew my doctor, we worked with the doula that the three of them all knew each other. And so when the day came, it was sort of like the inverse of the first pregnancy and birth. The pregnancy with my first was so easy, and the birth was such a challenge. And with the second baby’s birth, the pregnancy was so challenging and so filled with anxiety and doubt, and fear and concern and confusion, the sort of reinvention of myself as mother of two as opposed to Mother of One which doesn’t feel like a profound change. On paper, but it’s in my body it felt in women that felt like I was being asked to dimensionalize in a new way that I didn’t even know existed. And I didn’t feel I had the capacity. I just didn’t know how to do it, but the book itself beautiful. Birth, I went into labor has like five in the morning. It was slow and gentle. Gentle enough that three hours later, I walked my daughter to school, and we would stop every eight or nine minutes and I have a contraction, and then we keep going and she knew that my mom was coming if my mom picked her up at school with baby day. And so we said okay, I gave her a big hug the goodbye is that I don’t know if a baby date yet. But if a baby get up mom would call my mom. You’ll see Mark at the underscore. That is me. And apparently when my mother arrived just in time to pick her up at school. My mom arrived when she got there and Esme was about 30 feet away, coming out the front door of the school and saw my mother and shouted at the top of her lungs, “it’s baby day!!!!”
P: that’s appropriate
J: but it was just it was a truly gentle labor. So I labored on my own. My husband was there and then he was setting up the birthing pool and kind of doing all of the doing all of the things that that I was ultimately so grateful that he did he was making sure that everything was set up for safe and we had just moved putting up curtains so I didn’t have to give birth to all of Manhattan Avenue. getting everything ready. Sort of like the neighbors. I really didn’t know we were going to be your neighbors. Welcome. But I kept having this experience where I would feel the baby drop off. And I would be like, Oh, this is when I threw up last time. This is when my body didn’t know what to do last time. But this baby was positioned differently. I was older. I had done it before. And this time I knew how to let go into the birth process and kind of lean toward it as opposed to pushing against it. So we I think it was about 15 hours of labor start to finish and two hours of really active into transition and then 15 minutes of pushing and he came out in the water, happy and peaceful and ready to go. And yeah, it was it was a remarkable visit. And there was this moment where my doula and my doctor and my midwife were all there and you were to the midwife had two assistants. I’m surrounded by five women. And there was a chorus around me, they all you know, this, the contraction would come and I would just hear the word breathe. And they were all like echoing like a little chorus around me to breathing. Breathe a baby down. Breathe the baby down. And you know, my husband had his hands on my back and it just it felt this sort of was almost like a meditation of strong sensation moving the baby out of my body and the second child born or you know, until he became really determined otherwise until he lets me know something else. Okay, and my daughter is dark she isn’t she has my eye color there now dark green and she has like thick curly hair. And it’s like intense. And my other child has strawberry blonde hair and crystal blue eyes and greets the world of like, hey, like happy to be here. Thanks for inviting me to the party.
P: Everyone wants a surfer…good work
J: work. Listen, it’s great. I’m thrilled. He’s gonna He’s gonna get with a smile but she gets a sledgehammer you know, life’s good for him. He arrived and and has been a little light beam that has been to be one in April this year. So I am now that he is almost one I’ve been told in terms of my other conditions, you know, basically that I can nurse him for as long as I wish to and will wait until I get a little closer to natural menopause and then likely I will go ahead and have a hysterectomy in order to curb the likelihood of uterine cancer emerging on the later side. And in the meantime, of having biannual pelvic ultrasound and an annual colonoscopy which is a real delight and you know, taking care to check in as much as I can with my body and do everything I can to keep it healthy.
P: That’s amazing. I don’t know whether to say you should run out and buy a lottery ticket or if your son is the lottery ticket. Someone’s going on some kind of magic though and how does Esme like her brother
J: You know, I asked her the other night we went up for our first mommy daughter dinner. In the beginning of the pandemic. We went to a restaurant and she and I were sitting there by ourselves together. used to do all the time and we never do now and we’re sitting there and she’s eating spaghetti and meatballs. And I looked at her leaning cause of me. How is it having a brother? What do you think about that? What is it like for you to be an older sibling with the cause, very thoughtful for a moment and I was like oh, here it comes. She’s gonna send me some tomatoes. Oh like him. I was like Okay she does she likes him. He likes us. World the earth and for her for him. And I think she really excited by the prospect of having a sort of a comrade in our compatriots.
P: that’s an amazing story to have all this success despite the predictions that you were given at the onset.
J: Yeah, I mean, I think it’s that my story is a real testament to not letting the barbarians get you down right like don’t if you have a sense that that you their journey is not over or not what what you’re being told that it must be listened to that thing, right? It’s that that no path is preordained, despite what the medical field might like to say largely right because they don’t want to get it wrong. And it’s easier to say no than to say yes
P: Yeah managing expectations is a big game. So we talked in the beginning before we started taping about your writing about this. Do you want to talk a little bit about that?
J: Sure. I mean, I you know, it’s very much a work in progress right now. The pieces that I’ve published have largely actually been sort of tangentially related to my parenthood. I write a lot right now about a whole different stories in my life. I know I mentioned at the beginning that caretaker for my father and so I’ve written a lot about the transformation in that relationship. My dad has had HIV and AIDS for a very, very long time, and I was his primary caretaker. In the 1980s for quite a while, and he’s very, very sick. So I’ve written a lot about my parenthood, as reflected through the lens of having gone on that journey with him. And then I’m just starting to come back to some work about my own journey toward parenthood. And fertility and what it was to decide to become a mother with the legacy of mental illness that that exists in my family and also the physical challenges that presented themselves along the way. Those are works in progress and forthcoming.
P: Well, you can give me links to your website and I’ll put it in the show so people can find your writing.
J: Yeah, we love that.
P: Thanks so much for coming on the show.
J: Such a pleasure. I’m so happy to have this conversation.
P: To get to Julia for sharing her story of overcoming the process of becoming someone’s parent requires so much flexibility, the ability to withstand physical challenges, and willingness to manage uncertainty. It’s a miracle any of us are here. As mentioned previously, you can check out the extended show notes at war stories from the room.com and there you’ll find links to all the things we talked about, including Julia’s writing, and ways to take a look at Dr. drumlins Integrative Health Practice. Thank you for listening. If you like this episode, feel totally free to share it with friends to Like and Subscribe.
Thanks also Dr. Drummond. She and I have a longer conversation about endometriosis than is shared in the body of this episode. One thing I asked her is how people could potentially get a diagnosis more quickly, and I’m including her answer as a coder to this episode. So just after the music ends, you can hear her answer. Keep listening. We’ll be back soon. With another inspiring story
P: is there any advice you can give to women to help them get a diagnosis faster? Is there anything they can do to present more clearly to whoever they bring the issue to?
Dr. Drummond: Yeah, that’s a great question. I think it goes a little bit back to when you were talking about in this case, the woman had a vaginal ultrasound, and in endometrial the moon was found. Here’s the tricky part about that. That if someone is if there is evidence of endometriosis on imaging, someone actually can see it that shows that that’s a diagnosis. of endometriosis. The problem is, is that not seeing it on imaging does not rule it out. The only way to truly make a diagnosis of endometriosis is by a skilled laparoscopic surgery which I highly recommend being done by a person who specializes in endometriosis or pelvic pain or at least minimally minimally invasive gynecologic surgeries. So not your kind of OB GYN who is, you know, three endo surgeries a month or a year. But someone who does this this is their whole job because it’s as complex, as good cancer surgery.
So you want someone who really knows what they’re looking for because sometimes these lesions can be missed, especially if they’re not in the most common places. So back to your question about how to kind of drive this diagnosis forward. So just because something is not seen on imaging or there are no abnormal biomarkers, blood markers, things like that. Doesn’t mean a person doesn’t have endometriosis. So if you still have symptoms, keep pushing the issue. A few things that might be valuable to test in the bloodwork would be just chronic inflammation markers, things like CRP but also ca 125. The markers of increased risk of ovarian cancer can be valuable. But really, it’s more of a symptomatic diagnosis. So if your story is something like huh the women in my family all kind of said things like Welcome to womanhood. You have your period this get used to it, it’s gonna be bad, you know, that’s a red flag and the history of infertility especially because generations before didn’t really talk about it. In this comfortable away, you know, that’s a red flag. Any any other woman, you know, cousin and sister, mother, grandmother, whoever had surgery for endometriosis or had early hysterectomy. That’s a red flag. The challenges is that I’ve seen two things in sort of a family history story. One is that person you know, the family just didn’t talk about it much there. There’s you know, there was a lot there’s a lot of shame around any kind of problem with menstrual health. So it was either not talked about or it was normalized that everyone in his family has bad periods. Or I see kind of from the more the sort of less conservative, will you say like pressive crunchier natural medicine. It you might hear stories like oh, you know, this pain is part of the like, process of your body expelling the toxins or something like that. Also, not accurate but a different take on it. So that kind of family history is a big red flag almost all of my patients, there’s something the family history, they just maybe didn’t know about it and then the second thing is that really intense periods that disrupted middle school, high school trying to, you know, play during the softball championships and just white knuckling the whole thing being in the nurse’s office throwing up passing out one of the doctors who is a brilliant endo surgeon up in Massachusetts he has the because it kind of like the signal that someone probably has I know if you ever found yourself sitting on a bathroom floor in a school with like your chin on the toilet just trying to like, cool down. That’s a big red flag.
P: Yeah, Julia Julia mentioned that she during her periods, she just collapsed like the CVS because she you know, walking further
Dr. Drummond: pain down the leg. Yeah, a big one. Because of the nerves involved, but also that vasovagal response that kind of autonomic nervous system sweating, passing out needing to kind of lay down in the girls bathroom, putting your head on a cold, toilet or anything else. Those are all big red flags. And to me, there’s no reason that should happen. So a few other things that can lead to that degree of discomfort or variances for example, which can be seen on ultrasound. So if if that’s not the issue, or if someone is treating that well with nutrition and supplementation, and they’re still, you know, their hormone tests look normal and all of that. That’s where I’m really looking for that index of suspicion and the final thing that tends to overlap is digestive issues. So I certainly wouldn’t skate back, skate past that. So I think the faster we can educate these, you know, middle school health teachers, middle school nurses, that’s where we’re going to make inroads because that’s where it first presents. And most of my patients get really good. You know, like this patient you’re talking about at tolerating pain and powering through it. And they just stopped bringing it up after a while. And that’s the problem. So by the time they’re old enough to like, see, you know, let’s say they actually are seeing a gynecologist who even knows to look for this, which more and more of them do but you know, you might be 22 years old. You’ve had it since you were 1112. You just forget about you don’t bring it up anymore, because, you know, it’s been dismissed. So many times.
P: Yeah, you’ve been told us nothing. So it’s hard to think to bring it up. Yeah. Okay, that’s helpful.