Episode 68SN: One Woman’s Experience with Recurrent Miscarriage: Eileen’s Story, Part I

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

Eileen: My name is Eileen favorite. And I’m from Chicago, Illinois.

P: Nice. Excellent. So Eileen, we’re going to talk about the family that you have created. But sometimes the family you’ve created is a reflection in some ways of the family you came from. So I’m just wondering, did you grow up with siblings? Did you know you wanted to have a family what what’s your background like in those in those respects?

E: I grew up with siblings. I grew up with eight siblings. Wow. I I’m the number eight of nine. So yes, I always anticipated that I would have children and I have two girls.

P: Wow, that’s amazing. eight of nine is amazing. So imagining you all are pretty close in age.

E: Yes. My mother had the first four in four years. And then I don’t know, after that every two years so there were nine of us born in 13 years. 

P: God that’s like an amazing accomplishment to be to be honest. Wow. So we all know that’s hard work.

E: Right. So she my mother was 24 when she had her first and 37 when she had her last.

P: Wow. Okay, so that led to you thinking you definitely wanted the family. Did you want a large family? 

E: No. 

P: Okay. Okay. Probably also related right to your experience

E: more just you know, the financial realities of a huge family definitely shifted over time. You know, it was much everything was a little bit cheaper when my parents were coming up right homeownership education, all that good stuff. So I knew that for me that would not be in the game in the cards.

P: So let’s talk about your family then. Before you got pregnant. What did you imagine that would be like?

E: Well, so I have five sisters. So I pretty much watched all my sisters have babies from the time I was 13. I had my first nephew Wow. So I was always around kids, little kids being kids, you know, always so I don’t feel like I had any kind of illusions about it. Having been an adult so young, and then having much my sisters have babies and see their struggles and see their happiness. 

P: And so you didn’t imagine that you weren’t necessarily walking into some easy process.

E: No, no. No, I knew what it was like my sister had her first baby when she was 21. So you know, she was young. She got married young, she was you know, I was so I was babysitting at 14, you know, and she and her husband wanted to go out and parties, you know, so like, I was watching pretty young babies from a young age.

P: Wow, that’s good training, actually. 

E: Yeah, 

P: so was it easy to get pregnant the first time well,

E: so you know, my story is that it took me 10 years of infertility and miscarriages before I had a baby. So my my first pregnancy was like, Hey, let’s try to get pregnant and yeah, we got pregnant right away, but then I miscarried. So that was when I was 31. And then it was two years before I got pregnant again, at 33. And then I miscarried again, and then I didn’t get it.

P: Wait, let me let me stop you right there for a second. So at this point, then now what’s our view? I have one miscarriage and for the next pregnancy, I was, you know, on DEF CON two for the whole thing. Yeah, I’m wondering if you took it the same way or you thought this is a process and this is how it works?

E: Oh, no, they were. They were devastating for me. The miscarriages were really hard and really unexpected too because as you can hear I come from this very fertile background. My mother had nine children. She was one of 10 herself. Wow. And my grandmother was an Irish immigrant. And she came from like a family of 10 in Ireland, you know, so like I come from this long line of hyper fertile women. Yeah, so I never expected it to be a problem for me.

P: I brought this question about genetics and fertility to an expert.Today, we’re lucky to have Dr. William Kutteh. On the show. He’s the director of fertility associates of Memphis and board certified and reproductive endocrinology and infertility. Thanks so much for coming on the show. 

Dr. Kutteh: Thank you. 

P: Before we get into the specifics, Eileen’s mother and grandmother are both from really large families like 10 kids. I mean, herself is one of eight kids. And she was saying that she expected because she comes from what she described as a hyper fertile line that she would have kids easily wondering, is is a hyper fertilized thing or is fertility has no basis in genetics or how do we think about that?

Dr. Kutteh: That’s an interesting that’s an interesting point. Many people think that what are super fertile meaning that their problem is not they can get pregnant if they can easily get pregnant.

Issues then the study is what to do different about her family, and in many cases was this concept of uterine receptivity, how receptive is the embryo and neuter and selectivity. So in a normal, fertile woman who’s not having miscarriages?  She has a selection mechanism. In the years that allows computers to discriminate between the normal embryos that may be genetically abnormal. And if the embryos genetically abnormal in individual, normal reproductive potential, like her mother, then in most cases, we believe that that abnormal embryo never attached. She would not get pregnant. And next month, maybe a good embryo come along, she would get pregnant. In case of some women, I don’t know about this. Because this is all research and there’s not a test. I can draw blood or do a sample or whatever. We think that something about that selective mechanism of the uterus to discriminate between an abnormal and a normal embryo is altered in a way that uterus no longer is capable of doing a good job of saying is this going to be a medically normal, or is this going to be an abnormal embryo? And it can’t discern. So, you know, reproduction is complicated. There’s a lot of waste along the way. There’s a lot of duplicity. There’s a lot of excess on your test sperm A man may have millions and millions of sperm. Thanks for one fertilized the same thing, women that have hundreds of 1000s of eggs at birth, and they may have two three or four children typically. So the selectivity years in this individual that male say it was super fertile. It can grab the embryo, its ability to select out that embryo that’s normal, abnormal, is weak or under functioning or not not working well. And therefore the uterus holds on the embryos that normally would never attached. There’s another screening mechanism in a woman’s reproductive system that looks at that India when it’s a quarter of an inch and a half an inch in size 6,7,8,9 weeks for most miscarriages curve, and somehow we don’t understand somehow says this one, there’s this genetic problem or that genetic problem. And therefore, we’re going to shut down all maternal support to this particular pregnancy and we call that a mystery. So this is an individual’s this may be what was going on. She’s still able to produce eggs, they’re still able to get pregnant they’re still able to get to the uterus and attach and start knowing that that selective mechanism, which embryo implants in which, somehow

  

Eileen: so yeah, so it was really tough after the first one, and then, you know, I kind of got into that, you know, I think women go through infertility, you go through this sort of like, let’s try to get pregnant and then all the kind of rigmarole of like sex on timing and temperatures and your legs up the wall and all of that stuff. And after a while, that would get really a strain, you know, on the marriage. So, I would we would sort of go through like, let’s just stop trying, you know, with scare quotes, stop trying, you know, because it was sort of like even a verb itself is an action, that it has an underlying sort of feeling of desperation about it. And so you kind of let it go and then I got pregnant again, in the middle of graduate school, but how, and then I miscarried again. So at that point, I was, yeah, I was 33. In the summer between my MFA. I’d gotten one year down and I was going into my second year, and then I miscarried over the summer and then it was really five years before I got pregnant again.

P: So after the second one, do doctors say okay, if you’ve had two miscarriages, we need to look at X, Y, and Z.

E: Nope. It’s all falls under that. This is so common, and it happens to lots of women and the percentages whatever I think the percentages are like 25% of pregnancies end in miscarriage. So and I didn’t have tests to see, you know, the chromosomal test. Well, that to say my second miscarriage happened in Ireland. So you know, it was I was on vacation, so like it really wasn’t even discussed the idea of like doing a chromosome test.

P: One thing about Eileen’s case is that after she experienced her second miscarriage, there weren’t any tests run to determine what was the issue, and she was basically told that it’s common to miscarry. What’s the standard of care for recurrent miscarriage now?

Dr. Kutteh: The last dozen years or so there’s been a emphasis particularly from arboreta knowledge, that when a woman has an experience, whether she passes, whether she has medically induced passes or that tissue surgically collected, that it should be sent for genetic testing and the reason is not necessarily that he’s going to change any medical treatment that we do. It changes the way we think about that history. And hopefully the way that that individual patient or her partner, think about that mystery,

P: It makes sense to get tested in one of your papers you described all the things that can contribute to miscarriage. Does the testing involve the genetic testing of the products of the miscarriage or it’s everything

Dr. Kutteh: no society has been recommending that I have heard that the American Society of Reproductive Medicine was revising their guidelines. And in medicine, as I said, it may take eight to 10 years before changes, impact appear. To be is reasonable care for patients, like one of the factors also showed a study that prospective study on your 100 patients where we did all the guideline test and we did the test on the miscarriage. We tried to figure out what’s the most cost effective and beneficial and what will be less than those to answer. And when you add that medic question on the miscarriage to the standard, recommended gobbling effect now, we can give an answer to about 90% of people. There’s no more so sorry that bad luck kind of thing. We don’t understand what’s going on. You can give them a pretty good idea of what’s happened. Then we always can fix it, but at least we can say what it is and what our chances are in the future.

Eileen: Then five years went by without getting pregnant again. And I decided to try fertility treatments. So I went through I went through a round of IVF I got pregnant and then I miscarried again.

P: So did the miscarriages happen at the same point?

E: Pretty much yeah, pretty much like around nine somewhere between the nine to 11 weeks. Point always in the first trimester, which tends to be a chromosomal issue, right? Okay. So on this, I’m the third one. I said, Look, I want to cry, I want to test you know, I want to see what went wrong. And so sure enough, there was it was Trisomy 16. So there was an extra chromosome or allele or whatever. So that was sort of comforting. Knowing that’s what it was because I think for a lot of women when you have this really, you know, there’s a lot of like self blame like what did I do wrong? Did I drink coffee? Did I you know, have too much stress did that you know like and then you realize like that really helped me realize like, the problem happened at conception. Really, really small kind of microscopic level when I have absolutely no control and and that that sort of really helped.

P: Yeah, I think the truth of it is, for the most part, we don’t have much control at all over any of the pregnancy. So the idea that it’s your fault, I think is based on this belief that I could have done something different because I control this process in my body when really you’re not controlling any of it.

E: Right. Oh, you know, and it was really funny because when I got pregnant, again to talk a little bit about space between so I had I had another miscarriage I was 38 and I think by the time I turned 14, I was like ready to accept, like, I’m not going to be a mother. You know, like, this is not in the cards for me. I made my peace with that. And I think it’s really I want to be really careful when I talk about something like that because I feel like a lot of women who mystery get told you just need to relax. You just ate and then you get pregnant and again, this idea of control around but also like us sort of faulting the mother for being too anxious or something to get pregnant. You know, like

P: It’s you It’s your anxiety. That’s right. Yeah, yeah. 

E: So I really want to I really want to like express that like I did deep. But I don’t want to prescribe that path toward fertility. Because I think that’s really a dangerous thing to say to any woman. And like I don’t want anyone to like say that but I can say that, like in myself. I had reconciled it. You know, it was 10 years. Yeah, years of trying to get pregnant. I was like, I’m kind of done with this thing that’s just not working.

P: And in the end, the whole process is stressful. We had a lot of trouble getting pregnant and I remember like once the sex becomes work yeah, you’ve stripped away kind of the fun, and it’s now it’s just stressful. You’re in it for an outcome. And that’s, that kind of takes some of the joy out of it for sure.

E: Right. And so like I just, I’m a yogi, so I’ve been practicing yoga for a long time. And so like I really I really saw that like mind body connection. And I really believe in that mind body connection. At the same time. I don’t want to say that like it’s something you can just will yourself to have, like it has to be a deep conversion within the self. And no one should tell anybody else. Just that though, you know, but I will say that I did deeply let go when I turned 40 And I was just like, that’s okay, I’m gonna be able to do other things with my life, yada yada. And that’s when I got pregnant. What was really interesting was during that first trimester so I’m I’m a I’m a professor, so I was teaching one night. I was you know, very early in the pregnancy, maybe about 1011 weeks, and I went to the bathroom on the break, and I was bleeding. And I was like, Okay, I’ll tell you what’s also funny. At the same time, my sister was pregnant. My sister was two years older than I am. And so she was she was even older than I was. She was 42. I was 40. It was pretty much going through and she was six months pregnant. And when I told her that I was pregnant, I said okay, let’s just get ready because I’m gonna miscarry when you have your baby. So let’s just, let’s just get ready for that, you know? Like, let’s just, she was like, whatever you need to say, sister, you know, whatever. You know, whatever. Whatever makes you feel like yep. So let’s just say that’s going to happen. And so I called her that night and I said, I’m spotting. And she was like, okay, and I said, this is totally out of my hands. Either there’s the right number of chromosomes, or there is right yeah, 

P: yeah. 

E: And, and I really, I really believed that finally, you know, I really believe like, this is completely out of my hands. If this is going wrong. It’s nothing I did. It happened 11 weeks ago with sperm egg. And that’s all we have to do. So I went the next morning, I went to see my doctor, and we are going to start crying. And he gives me the old ultrasound wand, you know, because I’ve had been through so many, you know, three really horrible ultrasound, and he was like, we’ve got a heartbeat and I could not believe it. You know, I was like, and he goes if you’ve got a heartbeat that’s strong at this point. That’s probably going to work.

P: Wow. Oh my god. One thing I want to say about the miscarriages which are super painful, kind of amazing that your body can distinguish what’s going on chemistry is saying, Oh, this this sperm combination will not develop into a person. Yeah. And that in itself is like unbelievably cool wisdom that you can’t control.

E: No, you can’t control it. You know,

P: I mean, when I miscarried, I was doing a lot of computer programming at the time. And so that’s the way I thought of it is like, Oh, my body has figured out that this is not going to go to some endpoint. So it’s and that to me was a little bit comforting because I was doing this programming and you know, you get this error, you know, obnoxious beep and error message every time your code wasn’t working. I love it. And so, like that helped me get through to say, you know, this is kind of like

E: you’re articulating something. I think that’s really important for people to remember is that every room is going to encounter this experience in a different way. And they’re going to find comfort in all these different ways. And some people they might find it like, well, it was God’s will or it might be something else, you know, might be well, data error. Yeah, like not the right chromosome number, you know, whatever. But like we have to make space for like, all the different responses and like give voice to them. Yeah, because the culture hates to talk about miscarriage and, and people said the wrong thing to me because they didn’t know what to say. 

P: Yeah, yeah. I think people don’t know what to do with those sad feelings, right? Or how to talk about loss and for sure, I was upset and disappointed but in our you know, singular journey was a big deal to have gotten pregnant. And so we kind of held on to that.

E: Yeah, and I think for me, it was kind of weird to because I had didn’t have any problem getting pregnant. Pregnant, so I resisted, like fertility treatments for a long time because of that. And then when I turned 38 I was like, Alright, I better at least try this IVF because I don’t want to look back and regret it. Yeah. And then after I miscarried after one IVF round, which is horrible. I think I think that was worse, you know, and I mean, because you go through all the needles in the shots and that’s and all this stuff and like the fertility doctor was just like rooting for me, you know? And then, and then I went through another round, and I didn’t get pregnant. And I think that maybe contributed to just be like, okay, you know what I mean? Like, I think I in my head, I said, Look, I’d rather never be pregnant again. Then go through another miscarriage.

P: Yeah, it’s just it’s so much more complicated than we are willing to admit or thinking.

E: I was speaking with a friend of mine who just had a miscarriage a couple of months ago, and she was just like, it’s really hard to get pregnant. You know, she’s like, there’s only like this really small window every month. You know, the timing has to be just perfect. Yeah. Like, I know, it is really small when you start breaking it down and trying. 

P: Yeah, it’s just, it’s kind of a miracle that it even happens, you know, around 

E: Yep, I agree. Luck has such a huge it’s such a huge player in the whole process. Yeah, I feel Yeah, I mean, that was kind of what I came down to in the end. I just sort of went you know, I’ve just, I just had bad luck. Like, you know, like, up until that point, I was like, I’m just on the bad side of the of the odds. Yeah, yeah. Like bearing the brunt of the odds for all the women you know, like because I’m very you know, like, I’m, I’m like, oh, for three and, you know, that’s, I’m not gonna do the math right. But you’re, you know, I’m saying represent our miscarriages that I’m miscarrying more, carry my share. 

P: So how common would you say do we have real statistics on how common miscarriages

Dr. Kutteh: recurrent miscarriage?  Yes. So it’s a hard study to do because you need to, if you asked me how many patients every year we did a study when I was in Dallas at Parkland Hospital, it’s a non referred population. patient demographics are roughly a third Hispanic, Caucasian, a third African American, and at that time, there were 15 or 16,000 deliveries performed in that hospital every year. Now it’s and went through the database and found how many women had been diagnosed with recurrent miscarriage when I presented the hospital as about 1.5%. Now, that has to be an underestimate because everybody might not come back to that same facility for indigent patients that were saved for that hospital because as I say, less than baseline, if you look at all the other types of studies and literature is probably two three or 4% of all reproductive age couples will experience frequent mistakes your patient for example,  

her pregnancies and standard losses. This is the same with the same, some people said in a baby and we were supposed to see this and say this is normal. 

P: And you pass the 10 week mark in a heartbeat and then what’s our pregnancy like?

E: It was great. I had a really easy pregnancy. I don’t have any I mean, no, not really very little sickness. No, I never. I never had any sickness or nausea, fatigue, you know, no. Weight gain, no, nothing. It was perfect.

P: What were you imagining for the birth?

E: My second miscarriage was in Ireland. And so if you read the essay that I wrote about fertility, which was The Toast, it kind of goes into the blow by blow of that miscarriage but it was pretty traumatic. And I went into labor, basically a mini labor that’s what they call it in Ireland, mini labor, where I was just doing the abortion. It was it was brutal. I’m a writer. So like, as I was going through that, I told myself, I’m going to remember how steals and I remember that it was like, I’d have this like, pounding in my back and then just you know, a flood of tissue. And you know, and so, when I went into birth, right labor, so two things I went through initial childbirth classes and the regular childbirth class, and because I had to write so I gave birth at Northwestern British Women’s Hospital at Northwestern. And so before you could do natural childbirth class, you had to do traditional childbirth class. So I was in that and the whole traditional childbirth class was about epidurals. Yeah. And when you get home and wet, you know, and Pitocin and now it’s kind of like, okay, wait a second. You’re telling me that when I get an epidural, I can’t eat. I can’t walk around, and I won’t feel my leg. I’m thinking, how am I supposed to give birth if I can’t feel my legs? Yeah, I can’t feel my body below the waist. How do you possibly give birth so that was my logic. I know. And I know some women love epidurals so like No, no judgement, but like in my logical Virgo brain, I was like, that doesn’t make any sense. Right? So then I did the National Child Birth class. And they said, the best thing you can do is come to the hospital as late as possible. So and the other thing that I did through my yoga studio was I found an incredible doula. So when I went into labor, I called my Doula whose name is story. And, you know, she came to the house and she was also a massage therapist. So like for every contraction, I got a massage.

P: That’s awesome.

E: So it’s just like in what I was noticing it was that stab in the back feeling that I knew. Yeah. That I had already survived. Yeah. And in my brain, I’m thinking I can get that stab in the back and actually get a baby out of this. No problem. Yeah, you know, so I think like for me, compared to most women going into labor there was that pain fear factor was not as strong because I had been through that other experience with the kind of the catastrophic result of no baby. So I just really migraine I was just like, You know what I can I can take any of this if I get to be at the end. So story came and it was like, Okay, I think we’re, I’m writing down the, you know, the differences, the timing of the contractions, how many how many minutes? How many, you know, and I’m like, I think I’m ready to go to the hospital. I think I’m ready to go and she’s like we’re like up all night and she was ready to just go lie down on the bed for a little while. So she knew like because my my contractions were like kind of all over. They had hit a certain rapidity and so it’s now Thanksgiving morning, you know, Thursday morning at five. Dory and my husband I were off lying on the queen size bed and my labor completely stops, just stops. And so she’s like, okay, you know, I’m gonna go home call me if it starts up again. So she’s like, just walk around and just wait, you know, so I was ready to go the hospital around five in the morning on November 23. And then she talked me out of it. She really talked me out of it, which was great. And so then the whole rest of the next day, I just kind of hung out, walked around, but I didn’t want to go to Thanksgiving dinner. at my mom’s house. I just found had that whole like, feeling that 

P: Yeah, yeah. 

E: And then around eight o’clock that night, the contraction started again. You know, pretty rapid. I called Dory came and basically labored in my living room with her for, I don’t know, maybe three hours, so does your For, I don’t know, maybe three hours. 

P: So does your water break at this point or no water? 

E: Because that’s funny. So, so, so she’s giving me massages. And in she said to me this amazing thing she said, Okay, they know what he’s visualizing right now, like when you’re in when you’re when the contractions are coming in. So I used to live in Southern California, so I was like, Oh, I’m imagining like, you know, diving under the wave, right? You know, I like the waves coming in. So I’m like in my mind of a contraction, just dive in under the way and she said, I hate to tell you this. But in order for your labor to advance you have to stop diving under the wave. You have to let the wave come through you. And I was like, Oh, no. And so that whole idea of the mind body connection told me that like, I was actually keeping myself from progressing. Yeah, my brain was like, I was saving myself. I was keeping my cervix from opening through my own like Jedi mind tricks. So but the way she put it was like, it just I got it, you know, and so then the next contractions that came I didn’t die, you know, and I sort of like let that power come through, you know, and so what’s the what’s the visual now are you getting hit by the wave? Was really felt like the power went came up from below the earth and like, straight through me, like straight up my middle and like, open my cervix, you know, and she enjoys it. I’ve never seen anybody turn labor around that fast. It’s amazing. I know. It’s super amazing. So next thing, you know, and she’s like, Oh, we better get to the hospital right? Because like I

So, I’m in the backseat of the car and on all fours and I’m just like, moaning you know, just like it was really kind of fun. You know? Like, it was just like really letting it all hang out. You know how long a drive is, is are we in for like, 20 minutes? No one is it it’s in. It’s like 10 or 11 at night in the city. So it was Thanksgiving night, so there was like, no traffic. So I’m moaning. We’re going down Lakeshore drive my husband just like flooring it, and then we get to Northwestern. And I’m just like, You know what I loved about it was like, I had no modesty. I was just like, I don’t care moanin I don’t care like whatever. And so we get to triage and they’re like, You’re nine centimeters. 

P: Oh my god. Oh my god. 

E: So they put me on the gurney or whatever. We really into the elevator. Wait, let me ask you a question here. Are you Are you sensing that the waves are getting higher or whatever the whatever the image is, I don’t know what the heck, you know what I mean? Like, I don’t know what it was. I was just like, I was like very mammalian. Let’s just say it was very. I was totally my animal body. So then they really into the elevator and my water breaks  all over, and I was like Take That!

P:  I’m going to end this episode right here, with Eileen very much in labor, with her husband newly surrounded by amniotic fluid. Next Friday the 21st we’ll air the rest of our conversation. 

It’s impossible to listen to Eileen’s story and Dr. Kutteh’s experience and not be awed by the complexity of the project of growing another person. One other statistic that I wanted to add from Dr. Kutteh’s 2020 paper in Current Opinion in Obstetrics and Gynecology that blew me away: and I quote It is appropriate to remember that human reproduc- tion is an extremely inefficient process. Approxi- mately 70% of human conceptions never achieve viability, and nearly 50% spontaneously fade before ever being noticed [21,22]. Spontaneous miscarriage is ultimately the most common complication of pregnancy.

thanks for listening

we’ll be back next week with the rest of Eileen’s story.