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

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

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

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

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

P: Wow, that’s nice.

A:  Yeah. 

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

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

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

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

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

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

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

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

P: wow. 

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

P: wait, how far along are we here? 

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

P: Totally. Yeah. 

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

P: Yeah, that’s a bad sign. 

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

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

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

P: Good Lord. Oh my God,

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

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

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

P: Yeah, 

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

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

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

P: yeah, 

A: is so offensive to begin with

P: agreed. 

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

P: Yeah, yeah. Yeah. 

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

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

 

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

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

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

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

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

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

Dr. MT:  Absolutely. 

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

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

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

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

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

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

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

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

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

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

P: Yeah, 

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

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

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

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

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

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

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

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

P: Wow, 

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

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

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

P: Oh, that’s so terrible. 

A: Just one thing after another. 

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

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

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

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

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

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

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

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

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

P: Yeah. 

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

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

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

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

A: It’s very sad as special.. 

P: as forms of escape.

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

P: Yeah, that seems unbelievably hard. 

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

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

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

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

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

P: yeah, totally. 

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

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

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

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

P: Oh Good Lord, 

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

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

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

P:  Yeah. 

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

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

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

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

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

P: What’s the way forward?

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

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

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

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

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

P: Oh, wow. 

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

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

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

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

A: I do you make it to 40 weeks? 

P: Wow. 

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

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

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

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

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

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

A: Absolutely. 

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

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

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

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

P: feeling swirly the whole time

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

P: Oh Wow, 

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

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

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

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

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

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

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

P:  Oh my God. 

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

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

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

P: Yeah. 

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

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

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

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

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

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

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

P: Yeah, 

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

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

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

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

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

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

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

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

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

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

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

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

A: thanks so much. 

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

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

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

We’ll be back soon with another story of overcoming