Episode 26 SN: The Press of the Postpartum Period: Dana’s story

Today’s guest sailed pretty smoothly through the process of starting a family–she got pregnant relatively easily, carried her pregnancy without too many hiccups and gave birth in a way that wasn’t too far from her expectation–and then she hit a breastfeeding wall, which likely contributed to her experience with post partum depression.  Now she’s focused on helping women build a better relationship with their bodies.  She clearly articulates the mental and emotional struggle so many of us experience as this process transforms our bodies into something new we’ve not experienced before, and aims to guide women to a more compassionate understanding of all the amazing things our bodies do. Today’s episode is a little different from previous episodes because not only do we talk about my guest’s experience, but because of the work she does, we also discuss the press and pressure of postpartum expectations many women have, and talk briefly about one route out of what can be a really challenging fourth trimester. 

You can find Dana, and more about her work, at wellnesslately.com

To find more about Dr. Golden‘s work, click here

Breastfeeding research

https://pediatrics.aappublications.org/content/145/4/e20183696?sso=1&sso_redirect_count=1&nfstatus=401&nftoken=00000000-0000-0000-0000-000000000000&nfstatusdescription=ERROR%3A%20No%20local%20token&utm_source=TrendMD&utm_medium=TrendMD&utm_campaign=Pediatrics_TrendMD_0

https://www.sciencedirect.com/science/article/pii/S0974694312000163

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 who taught me very early on about my lack of control over the process of growing a family. Today’s guest sailed pretty smoothly through this process–getting pregnant easily, being pregnant without too many hiccups and giving birth in a way that wasn’t too far from her expectation–and then she hit a breastfeeding wall, which likely contributed to her experience with post partum depression.  She’s focused her work on helping women build a better relationship with their bodies.  she articulates the mental and emotional struggle so many of us experience as this process transforms our bodies into something new we’ve not experienced before, and aims to guide women to a more compassionate understanding of all the amazing things our bodies do.

In this episode, I include a brief clip from my interview of a professor of the history of science, because she provides some historical context for our current cultural understanding of breastfeeding.

Let’s get to the conversation.

Hi, thanks so much for coming on the show, can you introduce yourself and tell us where you are.

Dana: Sure I am Dana Baron, I’m an intuitive eating and body image coach and I’m in exotic suburban New Jersey outside of New York City. Yeah and I help women to basically escape the diet mentality that keeps them trapped and cycling through restrictive diets and then binge eating and emotional eating and beating themselves up and really build body image resilience. So that’s the work I do

P: That sounds like we’ll have a lot to talk about. excellent.

D: Yeah. 

P: So let’s talk a little bit about pregnancy, before you got pregnant, I’m sure you had the image of where it would be like, what did you imagine you were stepping into

D: I imagined I you know coming from the sort of, quote unquote wellness industry I imagined the pregnancy glow, and just feeling like a goddess of fertility. And, you know, just being absolutely enamored with my body and the miracle of life and all that kind of stuff it was not the case for me I’ve had two I’ve had two babies. My oldest is three and my youngest is 17 months so, 

P: oh wow, 

D: something fresh for me yeah,

P: good Lord well, people listen to you can’t see, but you don’t look like you have two babies in the morning. 

D: Oh, 

P: you look rested and you know there’s a lot of work at that age, so

D: yeah, I’m glad I look rested, we are. Everybody is sleeping through the night so 

P: oh, nice

D: that is a huge, that’s, yeah so I do get regular sleep but yeah I mean in COVID preschool clothes, no babysitters coming running a business, so it has definitely been a wild ride over here so I’m glad I look rested.

P: Yeah, my kids are older, my kids are teenagers and you know my younger one just got her license so 

D: Wow, 

P: I’m Literally completely superfluous, which is, you know, he relatively easy and COVID, so yeah but my sister has young kids and so I think about your cohort, a lot like, oh my god imagine.

D: Yeah, I mean, on the one hand the physical like manual labor is endless. At this point you know even my three year old can barely get himself dressed just yet. We did potty training in COVID all of that but, so that is a lot but I also think about, you know, the older kids, all the things they’ve missed and all the things they are grieving right now and certainly being setback academically like I, I’m glad I didn’t have to teach my kids math that would have been a real issue for all of us. I think there’s different challenges and especially, you know, a teenager just getting their license I’m sure there’s a whole new world of emotional and anxious, navigating, you know, at that age because right now they’re just always kind of home with me and safe under my care but you know they go out in the world, it’s a different, a different type of exhaustion, I would assume.

 

P: Yeah, you know, I have two girls and they’re both extremely competent. And so, I’m not super worried, you know, they’re both really cautious so the real thing would be they get pulled over for going too slowly or something, you know, 

D: that’s me. 

P: Yeah, me too. That’s me a good problem to have. Yeah, so let’s talk about your experience did you get pregnant easily.

D: I did, I actually think in hindsight I don’t I don’t think I knew enough at the time but we started trying, maybe in November and I do think I had a very very very early, not even pregnancy detected yet miscarriage because of what had happened with my cycle that month and that was the first time we tried and then, you know, the, I think a month after that I was pregnant or, you know, six weeks or whatever it was so.

P: Oh good Lord I’m glad it happens that way for some people because we all have that story in our head and, and it seems like it may not be true but it is so yeah, thanks for that. Okay,

D:  yeah. 

P: And how was the pregnancy.

D: It was very straightforward and no complications besides for sciatic stuff after you know after I guess that’s more postpartum but yeah it was really straightforward and I was really lucky to just both of us healthy, the whole time 

P: Good

D: and I know she’s was your vision for the birth, something you experienced. It was, I come from a long line of nurses, half of my, you know, half of the women in my family are nurses two of them labor and delivery nurses. Wow, so I always just expected a hospital birth, an epidural, sort of the straightforward Western medicine so I didn’t have. I definitely run on the anxious side especially, I lost my father at 18 and it’s sort of very quickly and he wasn’t sick, it gave me a little bit of my girl syndrome so like a little hypochondria. So I always feel safe around medical establishment. So in my sort of anxious line of thinking I just wanted to get to the hospital and get the baby out safely. That was the sort of the only thing in my mind I didn’t have any expectations really 

P: well that’s like a smooth way to do it.  What was the birth like did you have contractions and did you know what they were like What was all that like,

D: yeah, so I never went into labor, my OB practice basically schedule you for an induction if you were eight days past your due date, that was just what you agreed to when you went to this practice essentially so it was, I never went into labor, my best friend came out of the city we watched the Office all day on my due date I was like wait, I had no idea what to expect, and I just never went into labor so I went in they scheduled me for a Monday evening, to go in and get, I don’t know cervadil or whatever the, yeah, yeah, well one of the first stage of it but when I went in, they realized that I was like a centimeter or two dilated, so they said we’re going to skip that just go to Pitocin. So, I was given Pitocin and about 930 at night, and then I by one I think I asked for the epidural. I didn’t know what to expect and I, my aunt had my aunt who is a labor and delivery nurse said that if you do have to be induced. You might want to just be able to walk around as long as possible because once you do get an epidural now you’re in the bed, and you don’t know what’s going to happen, you could be in that bed for 18 hours so 

P: yeah, 

D: so I just kind of had that in my mind and then at some point I just said, You know what, and they checked me and I was moving along pretty rapidly, so I just got it at that point and then I think I pushed for like an hour and a half, maybe, and he just kind of came right out by 7am So it was a very quick. 

P: That’s awesome for a first birth 

D: yeah, it was great. I think I got like one stitch it was, it was very straightforward. I was very relieved. 

P: That’s awesome. And then, how long did you say the hospital? Just a day, or?

D: I think we got lucky, because here I don’t know if your audience is global, but here in the states you get like a certain amount, 

P: Yeah, 

D: from one. And we, oh I think it was like if you checked in. I forgot. Anyway, we got the longest amount possible so I think I was there two nights. Yeah and it was really interesting because my grandmother was actually upstairs at the same hospital like going through the process of the end of life. 

P: Oh wow

D: So she got to come downstairs and like me so we were all, it was a very full circle moment because my entire extended family was coming in and out of the hospital to be with my grandmother and then to come, you know, check on me too, so it was very I mean this is obviously all pre COVID

  

P: yeah, yeah, yeah, Yeah, That is kind of special and unexpected. Huh. And so two days after the baby’s born, you’re sent home. And what does that feel like was the fourth trimester.

D: It was sort of bewildering, the first really the first change in the emotional space around it was that they very quickly realized that my son wasn’t getting enough nutrition. I was trying to breastfeed. And, you know, I was so out of it, it was sort of like an out of body but you know the pumping wasn’t working his latch wasn’t happening I wasn’t they didn’t seem to see any colostrum, what does that colostrum? 

P: yeah, colostrum

D: So it was devastating to me sort of like 233 o’clock in the morning when the nurse comes in to check and he’s, you know, he’s not. He doesn’t have enough output, so they’re like we have to we need to give him formula he needs to eat this is too long and I was just like, I was beside myself I like just I never imagined that happening, I don’t know why, in hindsight is, feels ridiculous to me in hindsight but I just was so attached to breastfeeding, that was sort of all you hear when you’re pregnant is how good for the baby and my mom and my aunt and everybody my family breastfed it and I’m here I am like in the wellness industry, you know like, and it just wasn’t working so the first like that there was something so devastating about watching this nurse and stranger, give my son his first bottle in the middle of the night because the baby needed to eat and I was not doing well. And I just remember my husband and the nurse standing there with their backs to me like feeding my baby and I just was so like I felt like I had already failed. 

P: well also in your case where everything else had gone smoothly, you think Oh I can I can trust this, this is a process that’s working right. So, do they give you like classes or have a have, lactation consultant

D: we did it all. We did it all they had the lactation consultants in and out my aunt, my mom everybody squeezing my boobs all day. I even went in and I was just so attached to this you know I went in. My mom and I brought him back in maybe like five or six days later for like a lactation specialist and this is like a big Regional Hospital. My mom worked out for 40 years, there’s plenty of support and care here right. They have a whole team there, I went in, they measured the baby, they we breastfed on both sides we measured the baby again like trying to figure out exactly how many ounces and I was basically producing like half an ounce from one of my breasts, and I had had a breast reduction when I was 20, which the work I do now it’s like a very interesting to have done. So they told me, but I was, you know, 20 years old I wasn’t thinking about breastfeeding and the surgeon was like I cannot guarantee like I have to tell you that this could interfere. For most women, it’s not an issue but it could prevent you from being able to produce enough. So I’m kind of assuming that that’s what happened. So all those things combined I don’t know why it was so shocking to me but, yeah, so it’s like coming home my husband having to Google the right formula we had no bottles. It was, yeah, it was a mess. So, yeah.

P: And then, it sounds like you got that sorted or what was that process like

D: yeah I mean, about three and a half, four weeks of doing the. Yeah, in hindsight it’s very interesting, doing the skin to skin breastfeeding. And then I’d have to give him a bottle, and then I’d have to pump. And this was around the clock because I was told that you know you got that first few weeks of a window to get a supply going, and it just wasn’t happening.

P: You want to get into the weeds on breastfeeding, you could argue that it starts in puberty when the breast is being formed and is subject to all kinds of influences, but let’s fast forward to birth. Once the placenta is birthed, a bunch of hormones shift your breasts gear up for breastfeeding on demand, but what’s required for successful breastfeeding is the coordination of physical and biological factors. Essentially, you need to breastfeed, to be able to breastfeed because the process releases more hormones that encourage milk production. A study in the journal Pediatrics from 2020 collected all the most recent research about breastfeeding and said that colostrum that thick early milk, usually comes in in the first days, but that milk changes after a few days and consistency and volume. The authors here say that most women, and I put most in quotes, get the second stage of milk supply within 72 hours after birth, but that about 35% of first time mothers didn’t really get this milk in until four days or more after delivery. This delay could be linked to a first birth C section or a higher BMI, or things like gestational diabetes, or the Apgar score for the baby. But for a fraction of women between five and 8% this milk doesn’t really come in at any volume and for these women, the theory is that there might be something wrong with the breast architecture, or it could be consequence of breast surgery, or a hormonal disruption like an issue with the thyroid or PCOS. For more information check out the show notes.

D: And I was just at this point, you know, anyone has that a newborn. Breastfeeding bottle feeding and then pumping, there’s literally no time in between that, 

P: yeah, yeah

D” So I basically haven’t slept in three weeks. Can’t let go of this and finally, like it was like my mom and my husband had like an intervention with me and my aunt came up from North Carolina and it was just like, you can just feed this baby formula like Don’t miss this whole newborn phase because of this like it’s okay to let go of this struggle, and I was just I was a mess. Mess, you know,

P: well also not sleeping at all doesn’t in any way contribute to like a happy, balanced, you know view of the world. So, 

D: yeah, 

P: I’m sympathetic to that. And I’m impressed that your family, many of whom are in the labor and delivery world are supportive because I hear so many stories about people who say, Oh, the nurse said, you have to breastfeed or I don’t know, people just feel the pressure and I, I guess I’m assuming is coming apart from medical establishment. Maybe I’m wrong. Tell me.

D: well, I think I think there’s a I mean, at least in my world there’s that general consensus like even if you don’t want even if you just don’t want to breastfeed, like that’s your right as a woman and a mother and I understand the push for it right to because there’s sort of like, there’s been a sea change around the thinking. But what about the mothers who can, what about the mothers who don’t want to it. Where’s the space for them, especially in the prenatal care, everything is about breastfeeding. There’s no at least in my experience, there was no and if it’s not your choice to breastfeed, here’s how you find the right formula. Here are the different bottle options there isn’t any of that. So you really feel like you’re failing on a profound level as a woman I found maybe that was just my mentality I’m sure not everyone has the same experience but the old I have a generation of women in my family who– do curse on the show. And if you don’t want me to. They just, they could care less about anybody else’s opinions, and they just thought I should just give it up like let go of it like you just need to take care of yourself to like you don’t need to be attached to this. So, yeah,

P: so that sounds awesome that you were supported. And did you, you know, it’s hard to let go of something that you have, you know, packed away in the back of your head and had for a while but it sounds like you were separated from the idea at some point. And what was Do you remember that what that was like did you feel freed were you, you know, was it easy.

D: It was an epic relief. 

P: Okay, good

D: My husband could do middle the night feedings and I could sleep friends could come over and help you I could leave the baby for more than a few hours. So once that relief flooded in I was over it, you know, pretty quickly at least consciously I was over it pretty quickly like it felt like a relief for sure.

P: That’s awesome and it is, it is a lot of pressure. and I hear a lot of women say, No, I was told every woman could breastfeed.

D: yeah

P: it’s what Your body does. So yeah, 

D: and it’s so much better for the baby, that’s all you hear. 

P: Yeah, yeah, 

D: and then my grandmother. Yeah, go ahead. 

P: Sorry. Go ahead you can tell your grandmother story

D: I was just gonna say she told me, like, in her age, she had too much of a supply but everyone was telling her that the formula was better so she was like, You’re never get they’re never gonna let you get it right, so just do what you need to do for your family and your sanity, basically,

P; that’s a totally interesting perspective. It just so happens that I recently talked to a professor of medicine about the changing cultural appreciation of breastfeeding, I want to include a small clip from our discussion right here, a special welcome to Dr Janet golden, a professor at Rutgers who specializes in the history of medicine, history of childhood, women’s history, and the American social history. She’s the author of several books, including most recently, babies made us modern how infants brought America into the 20th century, which is a very intriguing title, thank you so much for coming on Dr golden. 

Dr. Golden: Oh, thank you for inviting me. 

P: One thing I want to talk about today is breastfeeding and sort of how we got where we are now culturally.

Dr. Golden All right, that’s it, that’s a great question and I think we can say that there’s a very long history of horses, promoting breastfeeding and forces opposing breastfeeding. In the United States by the 19 post war period 1950s Breastfeeding is just out of fashion it seems primitive It seems something that poor women do the modern scientific way is to bottle feed, and then it’s very precise you can measure how many ounces did my baby, drink some baby books had you weigh the baby before you fed the baby and then feed the baby and see how many ounces, they took in, and then people began to push back against that and saying no. Why should this commercialized enterprise these be in charge, why should medical authority dictate over what’s natural for women. Let’s go back to breastfeeding and of course there is good scientific literature that says it’s, it’s a better alternative, you know, cows make milk for calves women make milk for babies, you know it’s it’s a natural correctly designed product, but of course not everybody can do it and not everybody wants to do it so we live in a world now where two things are true. One is that I think we can stipulate that scientifically medically speaking babies are better off drinking milk, designed for babies, which is from human females, but we can also say that. Secondly, we live in a world where we get clean water, we can properly prepare our formulas the formulas are well designed, and not everybody can or wants to breastfeed their babies so both things are true.

P: So why did you, you want to walk us through like how you got to the other side.

D: How I got to the other side of the of the breastfeeding situation., 

P: yeah 

D: Yeah, I thought it was, I thought it was quickly, I thought I was cool, but then I had some like late onset postpartum depression. When you’re in it you don’t recognize that that’s what’s happening. I also think my circumstances played a role in in I, you know, nobody was really around during the week, we had moved close to my mom, but she hadn’t retired yet and she had a sick boyfriend and a dying mother so she just wasn’t she couldn’t physically be there as much. And my husband was commuting and out of New York 5:30am to 730 at night. And so I was just home all winter isolated with this baby, and, you know, it looked like a lot of watching Outlander in my bathroom all day, not realizing that that was not normal. 

P: Yeah, 

D: cuz I just didn’t. I just I sort of felt like this really culminated in the early spring when I just told my mom I felt like I didn’t have anything to look forward to, like I was just so overwhelmed, taking care of this kid, losing myself, having no time to even shower, let alone like have pursuits or a career of my own things like that. I remember I used to like knowing what time my husband would come home, that’s when I would like put normal clothes on so that he wouldn’t like worry about me. 

P: Yeah, 

D: and I think when my best friend who’s single and has this very adventurous sexy life in New York as an actor and comedian, she came out to see me and was just like none of this is okay, like what is going on here and I was just like, Well you never had a baby, you don’t understand she’s like, I have seen plenty of people with babies and like you are not okay. And I just, I just didn’t realize it and in hindsight, my husband, seemed to think that he was on top of it because he knew but he never discussed it with me and my mom is of an old school generation that’s not super open to therapy and mental health care and was just kind of like it’s the baby blues so you’ll get through it, you know, so I was pretty annoyed by all that. But I think moving to a new home having community around me it becoming spring getting involved in baby class activities and meeting other new mothers like just being out in the world again. Certainly was sort of how I got through it like I just think moving to a new place, and honestly spring I always have a little bit of seasonal depression, just before kids too, so I think it was just sort of like I certainly didn’t do anything proactive to get out of it. Unfortunately, I didn’t even really recognize it until it was in hindsight.

P: Well, kudos to your friend and you articulated really well that it’s hard to see when you’re in it. 

D: Yeah, 

P: which is a great explanation for why most people may not usually help comes from the outside because you’re not in a position to be proactive. 

D: Yeah. 

P: So, this regrettably sounds like an all too common story where many people are sent home from the hospital told they have to breastfeed, there’s no other way. And it doesn’t work out for one reason or another, and they just feel terribly. and there are bunch of other things that contribute to women feeling overwhelmed in the postpartum period, taking care of themselves and a new baby, maybe taking a break from work, and that world they knew well, and dealing with your post pregnancy body, whether it’s fatigure or brain fog or pregnancy weightSo can you talk to us a little bit about like what your work is focused on and how maybe you help women in this circumstance.

D: Yeah, I mean, so we generally work with women around their relationship with food and body. And from my perspective, a contributing factor to the postpartum issues women face is the pressure we’re putting on ourselves to return, quote unquote, to this pre baby body this expectation of losing the weight quickly getting back into exercise very quickly. And I think that that contributes to this feeling of failure because especially with your first child. It is such an overwhelming experience that you literally don’t even have time to shower so how you going to prep keto meal plans or whatever the hell you’re trying to, you know what I mean. Yeah, so there’s this added layer and I think what’s really sad about it is that it’s not. It’s a moment that we dread for our bodies. Typically, and it should be a moment of celebration its a rite of passage like this becoming like this journey from made into mother should be celebrated, and instead we have hardly any support in any area and there’s all these different ways that we’re already, it’s sort of baked in that we’re not going to meet these expectations in some way, whether it’s breastfeeding or being able to stick to a diet or whatever it is. So we really help women around, letting go of the diet mentality in the first place so that they can actually nourish themselves instead of restricting themselves, and also starting to see our bodies as more than a body, right, like we are full human beings and our bodies deserve respect and appreciation and care and nourishment, even if we don’t currently find them beautiful right so it’s a really it’s a, it’s mostly a shift in perspective, this is all an inside job as opposed to, like I said meal planning or something like that.

P: That seems super valuable and super useful and now that you’re talking about this, I do remember being worried getting pregnant that I’d gain all this weight, which. And what would happen after and you know who knows why, then, so I definitely somehow I’ve gotten that message too. Do you have a sense of like where it comes from or like how we change it, you know, more broadly.

D: Yeah I mean it’s a narrative of diet culture. The diet culture that we live in and this expectation that women’s bodies are never supposed to change. Right we’re battling our bodies from puberty on most of us in our culture, battling weight gain which is very normal in puberty and then, you know, pregnancy, it’s just this idea it’s this narrative we all subscribe to because of our culture and the way that we were raised, and it tells us that we should have the same body after children that we had before, which, if you really think about it like all women’s bodies do is change throughout our lives. And this idea that we’re all supposed to get back like where did your body go What do you mean you have to get it back like you’re still in your body it’s just this new version of your body. Right so again it’s the expectation thing right like there’s this myth we’re all living by that we’re supposed to look the same, our entire adult lives like why do I have, you know 38 After two children, why would I expect to look like I did when I was 17 before I had children or even if children are involved, you know. So it’s really just starting to wake up I think media literacy is really important and also just waking up to this narrative that we’re all living by right like I think I’m supposed to get my body back. Like what does that mean why, you know starting to ask those questions.

P: Yeah, when you see it that way it does not take account of all the massive changes that pregnancy brings and watch a dramatic change in everything is wrought by pregnancy as if it’s this easy thing that you just 

D: bounce back from, 

P: yeah. Oh my god. Yeah, that is kind of a crazy story that I can’t imagine who wrote that script because somebody who never had, who was never pregnant is my guess

D: I always pictured Don Draper 

P: poor Jon Hamm….

D:  So handsome. He’s doing fine…

 P: I’ll worry less about him… It does, it does sound like a, like a 1950s ad executive kind of thing to sell diet pills or some something crazy right that does not,

D: well yeah I mean, you know this, I think it was Naomi Wolf who says like this, these a culture obsessed with female beauty and this is not her direct quote but it’s not about beauty, it’s about obedience right if women spend all of their time and energy and resources and mind space, trying to control their body that doesn’t want to be controlled, then they don’t have that time energy resources mind space to look up and recognize that there’s so much wrong in our world that if we use those resources, maybe, like what would the world look like if women didn’t diet.

P: yeah, That’s amazing. That is a really good question because there is a lot of a lot of energy. I can imagine that is super prominent in the postpartum period and I hear a lot of people say that they did have body image issues when they were pregnant, and I, I’m not sure I had body image issues but I definitely said to my husband as I started develop a belly, I’m doing this wrong, this can’t possibly be what’s supposed to happen because I’ve never heard anybody talk about how weird this feels and how strange I look right this is such a weird feeling

D: I couldn’t wait to fit in to pregnant to maternity clothes because I felt like that in between, I was, you know, with my first pregnancy, it’s like you just don’t look like yourself. 

P: Yeah, 

D: but you don’t look that cute pregnant look at, you know, and just the fact that we all think about this so much as is the problem, right. 

P: Agreed

D: But yeah it is and I would say that we, you know, the postpartum space is really is really vulnerable and I think a lot of times what happens is women come to us after that and are thinking that they, their whole battle against food in their body is a lot of times wrapped up in wanting to get their body back right like wanting under this illusion of control that we have that we can eat our way back into our pre baby bodies right and that comes up a lot in pregnancy is a massive body image disruption, right, just like trauma can be a body image disruption or illness or, you know, a comment from your mother or something about your body right there’s so pregnancy and childbirth alone are massive body image disruptions because your body is so foreign to you after you give birth, right, nothing is in the same place nothing feels the same, you know, and I think, especially if you are breastfeeding, you feel like your body’s not even yours anymore, so it’s sort of this out of body experience. So, you know, working to heal that body image and to start to respect your body for everything it does and is outside of the way that it looks right and I’m starting to think in terms of body respect, especially when it comes to what’s going on in your brain. How am I speaking about my body, how am I speaking to myself about my body. That’s really sort of where the work is for sure. 

P: That’s amazing. That sounds so valuable. I have never heard anybody else talk about it in the terms that you’re using,

D: really. 

P: Yeah and it’s, I mean not maybe because I live under a rock like. But, but it is like now that you’re saying this I realize all the stories I’ve been telling myself are basically the wrong thing right. I’m not sure I I’m like not organized enough to do, to stick to a diet, or, you know, eat 1000 calories a day or something crazy like that but, but I definitely, I definitely have that voice, I definitely have that voice telling me to Oh, don’t eat

D: it would be uncommon not to have that voice right because we have it from the beauty ideal side but now we also have it from the medical and wellness industry side where we have these food police and we’ve moralized food choices right we think we’re good or bad around eating clean and dirty all these things so there’s, there’s a lot going on in our brains about food and our culture for sure there’s a lot of anxiety and guilt and shame around food choices.

P: Is there any international example where you think they’re doing it right. 

D: Wow. Not that I know of no so there’s an interesting study done in Fiji, a while back where you know the culture there had historically preferred in terms of beauty ideals, a more robust figure food and eating and being in a larger body were seen as a positive thing. And then Western, they got Western television, and basically eating disorders were virtually non existent in the culture there, and then they got Western television and eating disorders skyrocketed they’re seeing the girls on 90210 Right, so the beauty ideals shifted. And it’s become a problem there as well so I think any corner of the world where Western culture and media has reached, because these are European beauty standards right that are really impacting everybody in terms of their body image. So, yeah, there’s a lot tied up in it but not that I know of, maybe, you know that I’m sure there are so many cultures that haven’t been touched by Western culture at this point but not that I know of. 

P: Is there any other measure of the degree to which we’ve strayed from, you know, just have a healthy body other than like eating disorders, any other way to recognize like oh this is like eating disorders is a clear measure that we’ve done something wrong.

D: Yeah, so we look at it as like and I think it’s interesting because I think that the issues around alcohol have some parallels here in terms of we no longer see it as an alcoholic or not an alcoholic, there’s this gray area spectrum right of substance abuse, right. And I really believe that a clinical eating disorder. The difference between that and actually you know just the average woman who diets is really just the behaviors and the mind and the thinking is very similar, right, but it’s the frequency and severity and percentage of time and energy right, so I like to look at it as a spectrum, right and most women in our culture have dieted or will diet at some point in their lives, and it’s really, it’s not a question of like do I have an eating disorder or not, but the average woman diets, I think the latest data I’ve seen is 25 to 60% of her time each day thinking about food in her body. 

P: Oh, that’s a crime

D: that’s just the average woman that diets right because someone’s suffering from anorexia could be dreaming about it 110% of the time, right, yeah. That is the mind space and the energy we’re talking about here and that is just the average woman who’s googling Paleo Meal Plans. Right, so it is something that impacts everyone really and essentially it’s anti fatness, it’s a fat phobia that we have, and it’s just drilled into us, you know, from, from the womb, basically.

P: So what would be a healthier mind space for like to think about food just obviously this is a long term project and you can, you know, if it could be crystallized in a sentence, we don’t know what it was but, like, just give me a sense,

D: yeah sure so intuitive eating and Health at Every Size, are the framework that we work with and intuitive eating is essentially eating based on your body and your body’s cues, instead of what’s going on in your brain. Right, 

P: so that seems like retraining, 

D: it is if you look at a toddler dieting yet or hasn’t had their food controlled, they eat when they’re hungry they stop when they’re full. Many of them eat a variety of balanced foods right and they just listen to their bodies. 

P: Yeah, 

D: we’re the ones who have all these rules in our heads and really the dysfunction begins when we try to make our bodies something they’re not right, our natural genetic makeup has a weight setpoint determined by our genetics our bodies want to be in this certain range healthy and whole. We try to manipulate that and that’s where the dysfunction begins right it’s the binge eating the emotional eating the diet rock bottom of like, I can’t stick to it was 30 days now it’s 10 days and that was one day and now I’m just thinking about starting a diet all the time I’ve never actually dieting, and you feel addicted to food you feel out of control certain foods are off limits you’re cutting your food groups down to nothing, right, and all of this is sort of in the name of health, but at the end of the day, it’s really about weight, and everything tangled up in that for women, which is a lot

P: I’m grateful to you for doing this work because that sounds like literally your audience’s everyone, and 

D: yes, yes, well a lot of mothers for sure. Oh it is it is 

P: as I mentioned before the phrase bounce back is like she’d come with like a trigger warning or something because it, I definitely that’s planted somewhere in me. So I know that that is out there a lot. And,

D: yeah, I mean all we see is celebrities how they lost the baby weight all over every magazine like women’s weight somehow makes national headlines, Adele Gwenyth gaining weight and in quarantine, I mean, the world makes our weight news. There’s a global pandemic we’re talking about Adele’s weight. So like, of course, we think that, of course, we think about our body, our own bodies and, and whether or not we’re going to be able to lose the baby weight or the pandemic weight and all that stuff. 

P: Yeah, that does seem like a colossal waste of time and energy for the person who wrote the article the personal research theoretical everyone who’s reading it right, 

D: a lot of money to be made, though, as you know, the stuff about what is Wait comes out at the same time she promoted the book about I’m not even gonna say the title because I don’t want to trigger people into. 

P: Yeah, yeah, yeah…

D:  that’s what you follow the money and it’s a $72 billion industry that selling things to women to change their bodies and all the mind space and energy follows.

P: yeah, At the same time you’re supposed to have a beautiful pregnancy to the you know, 

D: goddess of fertility, no hemorrhoids no sciatic pain, none of that. 

P: Yeah, no kidding. That, that is such a de legitimization of, you know everything you’ve actually gone through. 

D: Yeah, absolutely. 

P: If you could go back and talk to your younger self and give her advice. What do you think he would tell her.

D: Just stop messing with your body and just eat. I mean I came to this word through my own struggle with disordered eating and body image and the term that comes to mind the most for me is waiting on the wait, like not feeling qualified for the life that you want to live or the person you want to be until you reach this expectation in your brain about how your body should look or be, and it’s usually not something that’s attainable for anybody because we know from our own lived experience and from the research that we can’t actually manipulate our weight, so just let your body be, stop messing with yourself is what I would say you know and to really stop seeing yourself as an object and be in a dynamic relationship with your body so that when things like illness or pregnancy or weight gain happen, you still have the same level of self respect and self worth that you had in a smaller body.

 

P: So, that’s amazing advice. Thank you so much for coming on and sharing your story, Where can people find you if they want to dive more deeply into this work that you’re doing. 

D: Sure, so we’re at wellness lately.com We have a free masterclass at wellness lately.com slash masterclass that will take you through the five shifts to start to relate to food and your body differently to start to heal from this diet rock bottom that you might be in. So that’s why obviously the.com slash masterclass and everything can be found on our website.

P: That sounds amazing. I’m going directly. 

D: Fantastic. Yeah, 

P: thank you so much for talking, I totally appreciate our discussion. 

D: Yeah, thanks for having me. This is great.

P: Thanks so much to Dana for sharing her story and for her work to help women appreciate their bodies in whatever size and shape they find themselves in. You can find more about Dana’s work at wellnesslately.com And thanks also to professor Golden for her insight about the historical context of today’s breastfeeding culture. 

 
Thanks so much for listening. If you are listening in the car or on a walk, when you get home, feel free to like, subscribe, or write a review…we totally appreciate views because it helps other people find the show…
 
 
If you are interested in the idea of “how did we get to our current culture around pregnancy and breastfeeding, tune in for the next episode where I interview two professors of the history of medicine and we talk about how ideas about pregnancy and miscarriage, epidurals and breastfeeding have changed over time…to land us in the spot we find ourselves in today…

 

Episode 25 SN: This Birth led to a Skydive, a Triathlon, and an English Channel Crossing: Gill

This episode could be titled “Overcoming: A Guide”.  My guest overcame the challenges of premature birth, and a fourth degree tear, and a misdiagnosis, and a fistula and a stoma. Having had so many elements of her life overturned by her experience of birth, she was reborn in a way, as a complete badass tackling every physical thing that previously induced fear in her. She’s challenging all the ideas that have created limits on her life and in the process, raising awareness and money for others who have experienced birth trauma and changing our perception of what life with a stoma can look like. I’m also lucky to include the medical insights of a fantastic OB, who happens to be the co founder of an organization called Beyond Fistula, helping women in Kenya who are working to overcome their own challenges with obstetric fistula.

You can find out more about Gill at: https://www.stomachameleon.com/

You can find out more about Beyond Fistula: https://beyondfistula.org/

Thank you to artist Nancy Farmer for the beautiful cover art. For more glorious pictures of swimming and light in the water, see : www.etsy.com/uk/shop/WaterDrawnArt
or: www.waterdrawnart.com

What’s a Show

https://www.nhs.uk/pregnancy/labour-and-birth/signs-of-labour/signs-that-labour-has-begun/#:~:text=A%20%22show%22%20can%20signal%20the%20start%20of%20labour&text=It%20may%20come%20away%20in,cervix%20is%20starting%20to%20open.

False labor

https://my.clevelandclinic.org/health/articles/9686-true-vs-false-labor

How common is tearing?

https://www.rcog.org.uk/en/patients/tears/tears-childbirth/

Stoma

https://www.webmd.com/colorectal-cancer/colostomy-stoma

Sepsis

https://obgyn.onlinelibrary.wiley.com/doi/10.1111/tog.12623

Audio Transcript

Paulette: Hi, welcome to war stories from the womb. I’m your host Paulette Kamenecka This is Episode 25, which feels like a milestone of sorts, and as such, I have a particularly powerful story today. I’m inspired by the women who share their stories with me, because these stories showcase strength and resilience that often the women themselves didn’t know they have. Today’s guest is an amazing example of this, and this episode could be titled overcoming my guest overcame the challenges of premature birth, and a fourth degree tear, and a misdiagnosis, and a fistula and a stoma. Having had so many elements of her life overturned by her experience of birth, she was reborn in a way, as a complete badass tackling every physical thing that previously induced fear in her. She’s challenging all the ideas that have created limits on her life and in the process, raising awareness and money for others who have experienced birth trauma and changing our perception of what life with a stoma can look like. I’m also lucky to include the medical insights of a fantastic OB, who happens to be the co founder of an organization called Beyond fistula, helping women in Kenya who are working to overcome their own challenges with obstetric fistula.

Let’s get to this inspiring story. 

Hi, Thanks so much for coming on the show, can you tell us your name and where you’re from.

 

Gill: Hi. Yes, sure. So my name is Gill Castle , and I’m from Northern England on the border with Scotland 

P: nice, lovely How many kids do you have?

G:  I have one I have some who, a little boy who’s nine and a half. 

P: Oh wow, that’s a fun age, 

G: yeah yes I’m just striking out getting out, or wanting more independence. So, yeah.

P: So Gill before you had kids I’m imagining that you had some ideas about what you thought pregnancy, like, what did you imagine it would be like,

G: oh, a piece of cake. You know, I was fit and healthy, I’m not an ill person, so I don’t do illness, I don’t get ill, you know, don’t really get colds, never had chest infection, you know, there was just, yeah, Well, I was going to get pregnant, and I was going home, baby. And that would be it really. Pretty much.

 

P: Okay, well it’s a good way to go into it, I guess, as good as any. And did you get pregnant easily.

G: Yeah, I did actually didn’t take long at all. Basically, that we tried for a couple of months, My husband worked away. He then went away and came back and we got pregnant, and literally the day came up. 

P: Oh wow, well done. 

G: Yeah, yeah, I mean, and the reason I know this is, it was some sort of freak chance because my period was due. Three days later, and it never came. And I mean I don’t really know how that even works but the child has definitely his. 

P: Did you find out with like a home kit?

G: Yeah, we just did a, just from the supermarket. 

P: Yeah, 

G: and get the whole pee on the stick thing and there we are, the two lines I can’t even remember now….if it’s two lines or cross or whatever. But anyway, I was pregnant. And, yeah, and I remember actually my husband not being sort of I mean he didn’t like jump up and down. He’s not a jumping up and down kind of person anyway. Yeah, but he, he was just like, alright, well yeah. 

P: Taking it in stride. Okay. 

G: But it’s still quite exciting. Yeah, yeah.

P: I’m assuming because you’re in England, you plan to go with a midwife.

G: Yeah, well, in in England. Yeah, well, Yeah, we have midwives, but you don’t, well you’re meant to have a dedicated midwife throughout your pregnancy, but not necessarily they’re not the ones that are at the birth but yeah, it was just going to be midwife. I was going to be an uncomplicated pregnancy so I wasn’t high risk or anything like that, but there was nothing really, you know, to cause alarm, to be honest for pregnancy, so yeah that was just the plan just to be with a midwife and just give birth in the, in the hospital in the city,

P: was the pregnancy easy? did you have, you know morning sickness? or 

G: no not the only thing I did have which I would actually rather have morning sickness, none whatsoever…because I had a couple of bleeds, which obviously is really, really stressful, so I had a couple of early scans, but they were always absolutely fine. But yeah I mean I didn’t get heartburn. I didn’t get stretch marks, mind you, that’s probably because I, I gave birth six weeks early so I missed out on that final expansion of the stomach. But yeah, no I was really, really fortunate I was, I was absolutely fine I’ll continue walking. I continued working as well, it was no problem, 

P: and then, you said you delivered early so, so what happened there?

G: So what happened was I was a police officer at the time, and I, we were working seven days on, and then four days off. I just finished my seven day set, and I was woken up the following morning. And it was exactly seven o’clock in the morning because I remember looking at the clock woken up at seven o’clock in the morning with a really sharp pain, which I now know was a contraction. And this was six weeks before my due date, so I just had this really sharp pain, then it stopped, and I went to the toilet and there was like just a little bit of pink on my underwear. And I thought, it’s a bit weird but you know it wasn’t in any, any discomfort like the pain it just disappeared. 

P: Yeah, 

G: so I left it for another hour and a half and then I had another contraction. But again, you know it wasn’t, you know it’s just like a quick kick in the stomach isn’t it, so I just thought, oh, oh. Whoa, that was strange, so I rang the early pregnancy unit at the local hospital and explained what had happened, and they said oh right, you’ve had a show, which is what the pink discharge was in my underwear

P: Show is part of the mucus plug blocking the cervix that starts to come away when labor is starting. It’s liberation from your vagina means that the cervix is starting to open. It might contain a little blood, which is why it’s pink

G: And yeah, you better just put on get checked out but you know we’re not worried. Just just come along and I told my husband, who said, Oh, but I’m about to go and get my haircut. No you’re not. We’re going to the hospital. There was a pause as we  both looked at each other and then he was like, right okay we’re gonna go. Yeah, we took all the hospital bags off we went. And I was put under observation, and they said oh you know, you might be having contractions but they were really, really far apart, you know, an hour and a half apart. They said, You know, we’re just going to monitor you. We’ll see what happens if you progress, but what it might be, is false labor. 

P: Yeah, 

G: so there’s my order was written just completely stop, and then you’ll go home. Yeah, so I sort of had this in my head that this was all just fake it was all false wasn’t gonna go anywhere . That was our that was, I was fine, really, was doing my knitting, and I wasn’t really, I don’t know why I wasn’t bothered it just wasn’t, I wasn’t concerned. 

P: I have to say I’m impressed that you brought your husband along I would definitely have dismissed my husband thinking like to try to make it so.

G: Yeah, yeah. Well, I think, number one, I don’t like driving into the city anyway, and the parking at that particular hospital was an absolute nightmare. So, and it was sheer, good luck and good fortune that he was there. Yeah, cause he works away, and he was actually due to be back until two weeks. But I think the week before the baby was due. So he just happened to have come home, and he was due to leave again a couple of days later. So, I mean if this had happened a week later he would have been on a boat in the middle of the North Sea, unable to come back. So yeah, that was one of the lucky things, not many lucky things but that was one of the,

 

P: so you’re at the hospital, and how long are you there and they’re monitoring and like what what’s going on.

G: So we got there about nine o’clock in the morning, I lost track of time really. All I know is that by, say, two o’clock in the afternoon, I was in established labor, and obviously the contractions have been getting closer and closer together. And because I was in early labor they needed to monitor the baby, so they had lots and lots of wires and things were strapped to my stomach and I couldn’t get off the bed I couldn’t walk around, couldn’t get myself comfortable at all. And when I was really in full swing of labor, I remember saying to the midwife. Oh is this. Oh, is this actually labor. Am I having a baby today, and she said oh yeah you’re very much having a baby, you’re going to have a baby really quite soon. And I was like, Oh, I just couldn’t. I couldn’t quite get my head around what she was saying, so so so yeah that’s when I sort of realized mid afternoon that I was on my way to have a baby, 

P: That is kind of shocking especially the way they treated you when you came. 

G: well yeah you know just, I mean they did sort of laugh in the delivery, delivery suite and my husband did as well because to them it was obviously really really big but I was, I just kept saying, oh this console and I did sort of say, oh thank God for that because I’m not coming back in six weeks time and do this all over again. Better be a baby or the other. All right, so by about four o’clock in the afternoon. That’s when I was in, I was in the grip of it all, but, as in the UK it’s probably similar in America but in the UK we have the opportunity to write a birth plan. 

P: Yeah. 

G: Which is nonsense most of the time isn’t actually level, level gets followed but now for one reason or another, and I’ve forgotten. I’ve written in my birth plan that I didn’t want to have any pain relief until I asked for it. 

P: Yeah, 

G: because I thought well I’m going to be the best judge of what I need, and I don’t want people given it to me too early. I want to be honest for as long as possible because then I’ll get the maximum benefit from the pain relief…I’d forgotten that said that. So then I was thinking well I don’t want to ask for pain relief, because they’re not giving me any, so they mustn’t think that I’m fat enough yet to be given pain. So I was laboring away but I’ve seen no gas and air with absolutely nothing until eventually I said you know, pain relief yet, and we’ve been waiting for you to ask it’s on your birth, no it’s not that you are like, Oh my gosh. Anyways, well you can try gas and air but we don’t think, you know, I think you’re a bit far gone for that and they were right. 

P: Yeah, 

G: I took a bit of gas and air and I was like well, for quite a lot, basically said This is rubbish. But then that’s when it all started to get a bit complicated because, obviously, you will know this but when a baby’s born, it actually has to help itself out with a birthing canal, at the end. 

P: Yeah, 

G: but because was only four pounds seven and he was tiny, he, he got tired, was exhausted, and he was back to back as well. So, his heart rate dropped, and then all hell broke loose. So I just remember all of us in numbers there’s loads and loads of people there, and they said right we’re gonna have to get you into theater give you an epidural and and get this baby out. You know, they said, no time to do a C section or anything like that we’re just gonna have to get the baby out. But they didn’t really say that quite as explicitly as that. I just remember lots and lots of people, and just the conversation of right we’re going to theater. And, you know, we’re going to get the baby out

P: that’s super interesting to me that they said like, this is an emergency. There’s no time for a C section, because I would imagine that vaginal delivery would take longer. 

So I brought this question to a doctor. Today I’m lucky enough to talk to Dr Matityahu who’s an amazing OB and the co founder and executive director of beyond fistula, an organization in Kenya, that helps women who have encountered fistulas in childbirth. Her organization helps women heal and rebuild their lives working out social and economic issues that these injuries can create, and she actually introduced me to Gill–an introduction I’m entirely grateful for. Hi Dr Matityahu thanks so much for coming on the show.

Dr. Matityahu: Thanks for inviting me again I love speaking with you and I love everything that you’re doing to inspire other women so thank you.

P: So one question I have is Gill talks about how they say, we’re gonna have to get this baby out and there’s no time for a C section isn’t C section the fastest way to get the baby out.

Dr. M: I mean it’s either C section or vacuum or some people will still do forceps. If the head is crowning and you can, and it’s right there and you can just sort of put a vacuum on the head and gently pull or put forceps on and gently pull and get the head out within a minute or two, then you would do that if the baby’s head is a little bit higher up and there’s no way to immediately encourage delivery and C section.

G: Well, you would have thought, you know, but they, I mean, considering that I went into theater, and it took three attempts for me to be given the epidural. 

P: Yeah, 

G: because they couldn’t get it in my spine. And I do remember being absolutely petrified at that point because of course they say you know this is really sharp needle, you have to keep as still as possible, because it’s going in your spine. And, I mean, there I am sitting on the bed holding a pillow to try and keep them but having contractions and trying to keep reliving, I mean, so, I mean it took them three attempts and then they finally got it in as soon as I got the epidural in. I Do you remember how she lined back and sort of going, Oh, right. Hi everyone. Hi, nice to meet you, sorry I’m not normally that awful, I’m horrible. I’m really sorry and, and I looked at my husband and I said oh have you been here all the time. And he said he was absolutely gutted, because he was starving, he said, You mean I could actually let you go and got something to eat,

P: so they get it in and then do you have a long period of pushing or are you already ready to push or how’s that all work.

G: To be honest, I don’t remember any pushing at all. I don’t remember anyone saying anything about pushing to me. I remember literally just lying back and saying hi everyone, and then they fiddled about, and then they brought out this baby. 

P: Oh wow, 

G: literally, literally, you know, and I remember they sort of reduced this white mucousy covered while baby, literally in front of us, and I was a bit like oh and then he was whisked away straight away to where they put them on the side and the works on him. We heard him crying, so I wasn’t, I wasn’t that concerned, and they had said you know, we’ve, we’ve given you the steroid injection, because the lungs are the last thing to develop in a baby so we’ve given you that to his lungs when he was grunting which is fairly common with newborn premature babies. Anyway, he was taken off to special care and that’s when I was stitched up and really that’s when the catastrophe happened

P: they take the baby and he’s off. You said he’s like four pounds seven ounces, something like that, yeah, yeah, that’s a pretty decent size for thirty four weeks

G: Yeah, that’s right 

P:  the person’s dishing up is an OB. Yes, she was a consultant, and she’s the one who told you that situation.

G: Yeah, so, so they said, you you’ve sustained a tear. And so while you obviously the epidural is still working. We will, she’s going to repay it. So you just lie there and she’s going to repay you. And, you know, don’t worry about it. You’ll then go back on the ward and be reunited with your baby. But because I couldn’t feel anything, because I’d had the epidural, I really had nothing to worry about. I mean, I was kind of aware that women could tear giving birth but I didn’t really know anything about I didn’t really understanding, to be honest, the significance of having a tear on the extremity of the tear, of course. 

P: How common is tearing?

Dr. M: tearing is pretty common, we grade the tears by numbers so a first degree tear would be a really superficial tiny tear in like the vaginal mucosa or some of the tissue around the entrance of the vagina. A second degree tear is probably the most common, and it’s sort of through the vaginal mucosa and and through some of the muscle, and a third degree tear and they call it a partial or a full third degree tear is a tear that goes through the vaginal tissue and into the sphincter around that the rectal sphincter, so it’s a tear that’s either a partial sphincter tear or a complete sphincter tear is a third degree sort of partial third degree or full third degree, and then a fourth degree tear is a tear that goes, again, through the vaginal mucosa of vaginal muscle through the rectal sphincter, and in addition, through the rectal mucosa so it’s a tear that goes right through and into the rectum, that’s a fourth degree tear those are much less common,

P: to put some numbers to this discussion, according to the Royal College of Obstetricians and Gynecologists in England, up to nine in every 10 First time mothers who have a vaginal birth will experience some sort of tear graze or a episiotomy for third and fourth three tears the numbers are a little different. They say six out of 100 or 6% of first time mothers experienced this

 

G: yeah, I just wasn’t worried cuz I didn’t feel anything so far as I’m concerned, I was just like well this is normal. I want a baby, I’ve torn she’s gonna stitch me up and I’m gonna go back on the ward and meet my baby, and it’ll all be fine. 

P: It sounds like she didn’t present it as something to be worried about. 

G: Well no, that’s because she didn’t think it was at the time which we found out in the nature investigation that she, she completely misdiagnosed me

P: so as far as you know she stitches you up and you go back to the ward 

G: yeah, yep so she says, and, and they said Ryan, you’re going to go back on the wards and all you need to do is you just need to keep the wound clean. So even though it’ll be painful, you must, You know, have a shower, keep it clean and dry. Don’t avoid having a bath or shower or anything like that. And I thought well that’s absolutely fine that’s, you know, that makes sense to me. If I can do that no problem at all. So once the epidural wore off. And we finally met our baby at two o’clock in the morning, he was born at 20 past eight at night finally met him on the ward at two o’clock in the morning. And that was very surreal because the ward was really dark, and we were terribly British about the whole thing, so we didn’t want to make any noise. We didn’t want to disturb anybody, so we didn’t even want to turn on the light, so we I mean this is ridiculous. So we turned on our mobile phone cameras are the lights that we can actually look at our child for the this time so I mean a lot of all of that you know obviously affected the bond that I had, because the very first time I saw him he was twisting my face for literally two seconds, and he was away. Then when we met him, we weren’t allowed to, we should have done really, really well I think about it with some of the other people on the ward. It should just put the light on, but we didn’t and I think, you know that that impacted as well, the emotion you felt able to feel. 

P: Yeah, why did they have him  for so long. What were they doing for all those hours?

G:  they didn’t have the staff to discharge special care. 

P: Okay, 

G: so there wasn’t actually any need for him to be in there, because after he’d been in there for about two hours or something, they said right yeah he’s absolutely fine, he’s ready to come on to the world, but he needed to presume he must have needed to be signed off by a consultant or, or the registrar or somebody must have needed to sign him off the ward and they didn’t have that person, so that’s why we had to wait so long, not because they were doing anything significant.

P: Okay good, so he’s totally fine. 

G: He was absolutely fine. 

P: But this process  messes with your ability to bond and, 

G: yeah, yeah, 

P: I am totally sympathetic to the impulse to be quiet for other people it’s, it’s hard to have such a, an emotional experience in a packed house.

G: Yeah, and in a dark house when you know, people see things, and you just think, you know don’t want to, and I’m sure you know when I look back I think noone would have cared. 

P: Yeah. 

G: Expressing joy over seeing their baby you know but you just saw yeah we never had a baby so we were just still in the motions of not having a baby, you know. So, we were on the ward and it was really shocking, actually, because my husband was a Royal Marine. When we were on the ward we were looking at all these women, who was literally staggering about holding onto walls, grimacing with pain, barely able to walk some of them, and Chris my husband looked at me and he said you know Gill, this reminds me of a field hospital. 

P: Wow. 

G: Yeah, and it really does a study, and never envisaged some ward looking like this normally when you see women with babies they sit at home on a property, or they go along the street with a prom or buggy or pushchair. You don’t see them when they’ve literally just had a baby, but in a way, made me feel a bit better, because all right well they’re just as much pain as me so that kind of normalized it a bit. 

P: Yeah, 

G: but at the same time, couldn’t sit properly. I could barely walk. It was really painful but that’s the kind of person I am I just thought right well I’m not going to get beaten by this you know all I’ve done is have a baby. Loads of people. Loads of people have tears, so I’m not going to make any sort of complaint or fuss, I’m just going to get on with it. So that’s what I tried to do, but as the day’s progressed, the pain just got worse and worse and worse, and the very next day after having the baby. I noticed like a brownie discharge on my underwear. And I said to the midwife. I’ve got like brownie sort of discharge on my underwear not much but there’s obviously something interesting oh no that’s fine. No, that’s fine, that’s just sort of the tissues all fixing together that’s just a bit of mucus and you know it’s nothing to worry about. 

P: Yeah, 

G: so I was like all right okay and then I thought well I know when I’ve like fallen over in the playground and scraped my knee. You do get a jelly mucousy type stuff on your knee when it’s healing. So I just thought well maybe, maybe that’s what it’s from

G: Gill talks about brownie discharge on her underwear, should that have been a red flag.

Dr. M: I think that if someone just said I have some brown stain, you know, when blood is exposed to air and is oxidized and dries, like, it turns brown and so if there’s just a little bit of brown staining. You know, I’m guessing that a midwife might think, oh it’s just some old, blood that sort of oxidized and dried on your underwear,

G: the pain just started to get worse and worse and worse, and after about two days, I started getting poo in my pants. And I thought, Well, no, but I wasn’t really because I wasn’t very much, I couldn’t really work out where it was coming from because it didn’t really seem to be coming from the normal area. 

P: Yeah, 

G: and then it was getting to the point that every time I went to the toilet. I was pulling the emergency buzzer, because I was in so much pain I was frightened to go to the toilet. 

P: Yeah, 

G: I have to add something that the toilet is going to go rific and, and then I clearly remember, after three days, I was in so much pain and so much distress, I had a shower. And I remember I mean this is, you know so mortified when you think about it, this is what you do when you’re in it. And then so I was in the shower. I could not work out where this poo was coming from and basically I couldn’t work out what was part of my body and what wasn’t. And a midwife came past, and I was completely naked in the shower and I bent over and showed her my backside and said, right, is my bottom in the right place. I said I can’t, I can’t I can’t work out what’s happening I said there’s poop coming out all over the place and I’m just, I can’t work out why my bottom is, and she’s looked at me like I was completely insane, and said, that’s absolutely fine, it’s fine. Just finish your shower, go back to your bed, sort yourself out, you know so yourself.

P: Okay, I want to stop you right there. Now looking back, do we think she should have known that something was off.

G: Oh 100% I mean, I remember being hysterical in the shower, you know and I clearly remember saying, I don’t know why I’m about this I don’t understand what’s happening to my body like where is it all coming from, can you just show me where it is. 

P: you don’t feel like the normal bowel movement. 

G: No, no. Yeah, I always remember that she just sort of like she didn’t examine me obviously she didn’t come close to me she obviously just glance and said, Oh, you’re absolutely fine basically make it out that was completely mad. And I actually thought I was mad because I knew that there was something seriously wrong. But I couldn’t, I couldn’t get anybody to understand what I was saying.

P: So, I have to tell you as an objective third party that I find this so frustrating to hear I’m so desperately frustrated on your behalf that you’re not being taken seriously. 

And then Gill tells the story about the poo coming out in the shower, and she doesn’t know what’s going on with her body, is this a red flag.

Dr. M: If anyone were to say, me or I’m sure one of my colleagues, like I feel like there’s poop coming down my leg in the shower, I think we would say we need to examine you like why would that be coming out, best case scenario I think maybe you have diarrhea and you’re just, you know, things are in pain down there and your rectum sphincter is relaxed, but even with the benefit of the doubt, I would wonder like why would you have stool running down your leg that is not a complaint that is typically heard at all. So, so I think that would make me immediately worry and say wow I really need to investigate like why is there stool, coming down your legs and that is not normal.

 

G: so then I went back to my bed, staggered back to the bed, and by this point, I could smell poo. I remember I was visited by a friend who’d come to see me and the baby, and she’d said, it smells like poo in here….And I was like oh, it’s the baby, and then I think well that’s not like that’s not long. She can smell something. Yeah, so I said to the midwife. On the evening shift I said, I think I’ve got poop in my pants. She was like really, and I said yes. And I said, I definitely have, and I said I don’t know what’s going on because I didn’t have this couple of days ago. So the way she looked and she was like oh I can’t see anything. And I said, But I’m in so much pain, I said it doesn’t seem to be getting any better. And she said what everyone had said to me repeatedly whenever I’d said how much pain I was in, they just said, Oh, the heat that you can feel around your body around the area that is just the tissues knitting together, and they are producing heat when they’re getting back together. I was sort of thinking, well, well okay, that makes sense, but I’ve had cuts in the past, and they haven’t got this hot, I mean I knew it was a big would but all the same, you know, it just doesn’t make any sense but that’s what everyone just kept saying to me, so I told this to the midwife been through my pants and she looked at me and she said no I can’t do anything. So the next morning, there was a change of midwives. And then the next midwife came on and she said oh you know how you said oh well I’m absolutely fantastic apart from the fact that I’m poo in my pants, you know, apart from that I’m great. And you know what you’re talking about. I said, there’s not be mentioned on her, Handover. Is this not on my notes, shut down and are we talking about what I was like, right. Last night I told the midwife that I poo in my pants. That my friend is about to come in the room. That’s the situation. And she said oh so she had a look and again so it looks like it’s healing fine. Yeah, no, You’re okay. So again, it was like, well this is just, like, completely mad like two people examine me now I would say that there’s not a problem, and everything’s healing. Yet, I know I’m pooing my

P: two midwives check her on successive days and say she’s healing, even though we know ex post there is a problem. Why does it look like there isn’t a problem.

Dr. M: So, you have to do a really good exam to see what’s happening underneath your repair. 

P: Okay, 

Dr. M: so if you’re just looking into the vagina, and you see your suture line that the vaginal mucosa is sort of closed up on top, you’re not able to look at what’s underneath that and so it’s the layer underneath. That’s not closed until unless you do a rectal exam or put your finger into the rectum and see, do I feel an opening do I feel a defect or is it completely closed off and smooth. You don’t do a rectal exam you don’t know what’s happening underneath. You have No idea. So I mean, it looks nice on top, it’s like if you had a bullet wound in your abdomen, and I just put a shirt over it and you’re like yeah that’s sure it looks great. 

P: Yeah, 

Dr. M: so like the top layer looks great, everything’s closed off and smooth and looking fine but underneath I’m hemorrhaging. so it’s sort of like it’s the deep layers that have to be evaluated and if you’re just looking and you’re like, everything looks good on top. That’s not telling you the whole story.

G: later that day I was trying to work on a project but by this point, I couldn’t really walk. Essentially I collapsed in the corridor. And I was found by a male midwife. And he said, you know, you’re right and I said no, I can’t do this anymore. I said I literally can’t do this. And I remember like my voice was really weak. And I was just saying, I can’t, I can’t, I just can’t, I can’t do this. It’s so painful, I just can’t cope anymore. And you know what he said to me, said oh, maybe it’s your perception of the pain. 

P: Oh my god.

G:  Yeah, and I thought, are you having a laugh, like, oh so I’m a wimp. Yeah, part of it died at that point because I just thought right. Oh my god, I, you know, literally just collapse in the corridor. I’ve said to this man that I cannot cope and he said to me, maybe it’s your perception of the pain. And then he said oh, what would you like me to tell you, and I was like no I’m fine thank you. I don’t want you coming anywhere near me. 

P: No kidding. Oh my god, 

G: you know, and then I just thought that when I am just going to go back to my bed, and I’m going to die because no one’s taking notice of me and be seriously wrong. And while you can probably guess, you know, I’m quite articulate, I’m more than capable of sticking up for myself, I was a police officer for heaven’s sake, but I was in so much pain and I was so weak I wasn’t able to speak up for myself but I could I didn’t have the energy to fight with people to be seen. 

P: Yeah, I mean, this is, this is the tricky thing you learn in medical contexts that you have to be your own advocate, but it’s wildly unfair to make a woman who’s just given birth, be her own advocate. Yeah, you’re filled with hormones, you’ve just basically run a marathon by giving birth, these two things don’t go together.

G: Exactly, exactly and my body was fighting too much to give me the energy to then fight for support and help. So that’s my bed but obviously this midwife must of thought Better go and see what’s going on. So another female midwife came and said oh you know I hear you, collapsed, and I examined you. Yes, if you can, but I’m sure like everybody else you’ll say there’s nothing wrong with me. This is after now five days. And she tries to examine me, and I remember she basically put her hand toward where the tear was. And then she immediately brought her hand back And she said, Wow, I couldn’t even get near to it I could feel the heat coming off you, I was basically hovering over that and she said and you, you jumped back on the bed. Yeah, and I was like well yeah I mean an awful lot of pain. That’s right. We need to get you examined by the consultants, the consultants gynecologist. 

P: Yeah,

G:  came down to examine me, and they actually had to give me gas in it, because they couldn’t get anywhere near me. And the consultants, really look for that long to be honest and she said, right, you’ve got a fourth degree tear, which has been missed. And she says you’ve got an enormous abscess around the tear, she said that’s now burst, and you’ve also got a rectal vaginal fistula, which is where you have a hole between the lining of the rectum and the vagina. You’ve got poo coming out of the vagina. And, and I remember actually being really relieved. I was like, you know, thank God for that. Like there actually is something seriously wrong with me. 

P: Yeah, 

G: so she said right, well, I’ll have to get the colorectal surgeon to come down and see what he thinks. But she said I think the only way out of this is to give you a stoma, so that we can divert the feces away from this area, give a chance for everything to heal, we can repair you reverse the stoma. And you know, get on with your life. 

P: what’s a stoma is an opening on the abdomen, that can be connected to either your digestive or urinary system to allow waste to be diverted out of your body. If it can’t move through your rectum bowel movements leave your body through the stoma and are collected in a pouch that you empty out, it can be temporary or permanent. There are a number of different reasons to get a stoma, like Crohn’s disease or bowel cancer or for obstetric reasons.

 

G: I was just relieved to be honest if it said to me, we’re going to chop off both legs I would have said I don’t care. That takes away the pain to do a heavier light so they went off and I burst into tears obviously and ushered off into it, I finally got my own private room. Do you remember joking and saying, Gosh, what you have to do to get up. So yeah, so then that was the next the next stage really but, I mean we’re only talking about less than a week after having a baby, the fistula tract was actually septic. And that was septic for a year and how on earth I didn’t get sepsis. During those five, you know. Well, I think I must have been pretty close, because I, you know, I just remember just being so weak and unable to function. 

P: When they examined you and finally sort of validated everything that you had been describing for days. Did you understand exactly what they were saying like what the process was and what they’re going to do

G: well by sheer good fortune. One of my friends who I met in the city that I was living in had had a stoma, in the last year, but she had a different one she had had an ileostomy, which is the small intestine, and I was going to get a colostomy. So as I was like right, I do actually have a vague idea of what this kind of entails because I’m remember talking to her about a bags and all this sort of thing. I did have like a little bit of an idea but at the same time it was just too much information really 

P: Yeah, 

G: I mean I knew that a fourth degree tear was bad. I knew a fourth degree tear was like the worst that you could possibly get. Y

P: Yeah, yeah,

G:  I mean obviously I wasn’t particularly overjoyed about getting the stoma but you know I just thought, you know it’s only for 12 weeks. Yeah, only for 12 weeks. So this is fine 12 weeks 12 weeks, and then look at all the life.

P: Yeah, and it sounds like a fix. Right, so,

 

G: yeah, it was just, oh, you know, that’s fine and I thought well you know my friends you had a stoma and, yeah, she’s another great time with it but I thought well, it doesn’t matter, because it’s only 12 weeks. And I was just relieved. I was just so relieved because right we have a solution to my problem, and I’m going to get fixed and I’m going to get better and I’m not going to have this infection, and people are actually going to start taking me seriously.  And they did. 

P: Yeah and it is so and so, this whole time. Is the baby with you or how’s it going are you breastfeeding.

G: Well I tried to breastfeed, but obviously, because he was premature and like obviously my body just was too busy. 

P: Yeah, 

G: I didn’t have any milk supply. 

P: Yeah, 

G: and really, I don’t know what it’s like in America but in the UK, they’re pretty obsessed with breastfeeding. 

P: Yeah, same here

G:  which I can understand why I know that it is best for the baby. Understand this, but because I wasn’t very well, I didn’t have any sort of energy to to argue with him and say that I wanted to do it in any different way so they I mean, they were trying their best to give me the best chance to be able to breastfeed, but you know I mean I was expressing, and I was breastfeeding. I was like struggling to survive. 

P: Yeah, 

G: and I didn’t have any milk whatsoever, so so yeah. At that point I was exclusively breastfeeding. After a week, but it was eight days, eight days after the baby we were transferred to a different hospital, so that I could have the surgery. And of course, after I had the surgery, you know, my body was just like, No, yeah, there is no milk. There is no milk, like we have nothing to give this baby. And it was after that that I said right this is it. Like, I am not breastfeeding anymore. My baby is hungry, I’m exhausted. Just put him on a bottle. And I remember the poor little so the first time I had a bottle, he just, he was just so you know, gluging it down. Finally, really full for the first time the poor little thing. And  someone else cand do it

P: totally…in the in the US, there is a press now to say fed is best, yeah. Breastfeeding is best because there are all kinds of things that can make breastfeeding just too challenging. And when you go to the other hospital your baby can come with you.

G: You know, my poor husband, so I had to go in the ambulance. Yeah, but my son couldn’t go in the ambulance. and my baby was tube fed. So my husband had to take this tiny tiny little baby who’s being tube fed in the car, the very first time across the city to this hospital neither of us have ever been to. Yeah, and you know what it’s like the first time you, you have your baby in the car. 

P: Yeah. 

G: One of you is always looking at his breathing. We crushed the chest but yes, he didn’t know anyone that and he didn’t really know what he was doing and he was following the ambulance and so it was just so stressful to get across, city with this time and of course some was tiny as well I mean, 4.7 pound is not small, but it was a small for the car seat

  

P: ours too when we put her in the car seat we were like, oh she doesn’t fit at all….my baby was born early too and if it makes you feel any better. As soon as my husband dropped us off on like the lawn in front of our apartment. He crashed the car, driving it back to the garage he crashed it like it’s stressful. 

G: Yeah, totally, totally. So I had my surgery, but I had to then go on the adult Ward, because the head you know the midwives can’t cope with someone who’s just had a stoma, and they said the adult colorectal Ward can’t cope with a premature baby, that’s been too fast. So he had to actually go into special care. Just so that that was somebody with them all the time, which was you know, that was an eye opener and put things into perspective for us because at the end of the day, we have a lovely healthy little boy. And yeah, I you know was in my wheelchair being wheeled across the sea and we felt guilty actually that he was in special care because he was around, babies who needed to be in special care. Yes, that was, you know, it helps to have a dose of of perspective sometimes I think,

P: yeah, but I’m glad he had that opportunity because this is probably the only circumstance in which you and your husband feel confident that he’s totally cared for by people who know what they are doing

G:Yeah, that took that pressure off…I was on a separate board for two or three days I think and filled with old people’s the youngest person there, and I remember the women on the ward, sort of saying oh you know. Well, it’s worth just got round, but I literally just had a baby, and you have to leave your baby at like eight days old and you know this is a horrific but it decided to probably last because I didn’t really care. Yeah, but you know I can’t be upset about that because I’m just now trying to deal with this stupid bug, that’s on me and leaking all over the place and, and, yeah, couldn’t bend over, I couldn’t do anything. I still obviously had all my tear, my abscess injuries. You know, it’s just the complete mess basically everywhere.

P: That sounds super challenging and I bet you were on high dose antibiotics for the abscess and

G: yeah so, essentially because of the fistula tract was septic but it wasn’t fixed for a year. I had But, basically, a year on metronidazole, which is a really strong. It’s a really strong antibiotic. I was I was basically on that about, well, I was on up pretty much every month for you. It just kept flaring up and getting worse and then it needed drained. As an emergency and hospital and. 

P: Wow

G: Yeah

P: So tell me what happens when you pass the 12 week mark when you’re supposed to be going in for the reversal of the bag

G: Well, we didn’t know it was way before that we realized that it wasn’t going to happen, really, because the hospital wrote to me after I’d been home for a month, and up until that point, I kind of just thought, you know, I’ve just been unlucky. This is just what happens sometimes when you give birth. 

P: Yeah, 

G: but the hospital wrote to me and said, It is not normal. What happened to you, will launch an investigation, and I was like, oh, oh right, so hang on. What do you mean, like the you obviously know something’s up here. 

P: Yeah, 

G: and I was invited to meet the consultant who delivered the baby, and she was profusely apologetic and, I mean, they found out she wasn’t entirely truthful at that meeting, and I stand by what I said to her I said you know I’m not bitter about the whole thing, you’re a human being at the end of the day and you’ve made a mistake, and yes it has had a catastrophic consequences me but if you hadn’t got my baby out when you did, he would have died. Maybe I should have had a C section but I just I don’t know it just didn’t feel right to me to be to.

P: Yeah,

G:  I don’t know angry about it. And I’ve never genuinely, genuinely, never been bitter, just think it’s a pointless emotion. 

P: Yeah, 

G: it wasn’t gonna get me anywhere at all. So I just, I just kind of accepted that she had made a mistake and it has happened but I didn’t realize at that point. Exactly what mistake she had made until I got the results of the investigation, 

P: that seems like a generous response then is also life lengthening for you, because it’s a lot of work to carry around anger for something that happens, that was a mistake.

G: Oh, exactly and, you know, there’s certain members of my family that are extremely bitter about things that have happened in their past life and I’ve seen how that can destroy you. 

P: Yeah, 

G: and how pointless it is and I just think, you know, just so I’m not, I’m not going to go there, it’s it Yeah, it doesn’t, it wasn’t going to make me any better., I mean some people say, Oh, she was sacked. And I said why would you want it to be so like I would feel awful. I said that wouldn’t make me feel any better, 

P: yeah, yeah. 

G: But but yeah so then got the results of the investigation and the investigation found the consultant. Initially, diagnose a second degree tear. She stitched me up with this in mind, and then she thought no, hang on a minute. I actually think I’ve got a third degree tear here, so she took all the stitches down and stitched it back up again. She thought I was fixed. So, she’d  actually missed the fact that I had a fourth degree tear, and the fact that I had a rectovaginal fistula

P: Gill says that the consultants confused what kind of tear she had with the obvious what kind of tear has that work. Well, I mean, it’s hard to say, Would it be obvious 

Dr. M: It’s hard to say would it be obvious….tissue is usually just shredded and bloody and raw and it’s really hard to see clearly what’s happening down there, and it takes, it takes a lot of experience to always be right. And so you can see that the sphincter is torn and you know, I mean you just you just have to be really thorough and do a rectal exam and really check to make sure that things are intact because it’s not so obvious, it’s not just in your face like you have to be a detective to like look and evaluate and really see what’s going on underneath, to be sure that you’re getting the whole story fourth degree tears are not that common… three tears are not that common you know third degree tears are definitely more common, but even that is not as common, and you know you get a third degree tear and you’re like, Oh, is it really a full third degree or is it just partial oh no it can’t be full, no I can’t have done that much damage you know just like symptoms I think we talk ourselves out of how how severe something is, you know, and then once you realize like, okay, it’s a 3rd degree tear, let me fix it,

P: it’s totally interesting to hear because I think as a patient you think everything is over once the baby is out. You think the birth is over, like there’s nothing else to happen, it’s by no means over.

Dr. M: No, by no means over and and you know all repairs are not the same and and all of us do not do the same quality of repair. So I just it just makes me sad. It just makes me sad that it wasn’t fully evaluated it was missed and it Wasn’t repaired. 

G: There was a little bit of debate about whether the fistula was caused by the abscess bursting really sure, well when that was caused to be honest, or it could have been through forceps or just not sure. And it was brought up that you know when she wasn’t entirely sure what she was dealing with, she should have called for the colorectal team to come down for advice, but she didn’t she just carried on. And so as a result, because she used all of this tissue twice to create two lots of stitches, it was really friable yeah and it left no viable tissue to do a repair. So she essentially left me a irrepairable, but also on top of that, my sphincter was so badly damaged externally and internally, which obviously is what a fourth degree tear is but the damage was so profound, I couldn’t be repaired anyway. The way that she she’d she’d made it in part like literally impossible, and it was all because she didn’t want she missed it. So, I mean to cut a long story short, I sued the NHS and I won in two years, which is unheard of. Normally it takes six or seven years. 

P: Oh wow, 

G: but it was pretty it was pretty clear cut, You know she missed it. She botched it. So she didn’t obviously reveal that to me, that would mean. Yeah, but it is what it is.

P: Yeah, certainly not what you expected when you entered this process.

G: No, and I remember things my mother I you know, could I not just had a premature baby did I have to have this on top, you know, a fourth degree tear and then the rectal vaginal fistula, and then abscess and then the stoma….now, still, and because I had a stoma I ended up losing my job, police officer so it was all just like one, it was just snowballing like a wrecking ball..going through my life just throwing things, and yeah, like you say, you know when you get pregnant, especially when I’ve got pregnant so easily and my pregnancy had been so easy. I wasn’t used to being incapacitated in any way, and vulnerable and reliant on anybody. So that was quite difficult. It’s just not who I am, who I have to be. 

P: Yeah, I saw on your blog, you mentioned that in the US we call them near misses, I think, which is seems like a silly way to categorize it but there are 30,000 women in the UK who suffered a severe pregnancy complications after birth.

G: Yeah well it’s 30,000 women every year new UK experiences. Well, as a traumatic birth, there’s can be anything really, but they do say I think something like 20% of women suffer some sort of extensive tearing, and that’s a lot. 

P: That’s a huge number

G: it is a lot. I mean, my particular injuries. Very very slim chance it’s like naught point 5% or something ridiculous I was extremely unlucky but. But yeah, I think it’s cool as a result of childbirth and injuries as a childbirth is so much higher than people realize. Yeah, one of my things is, obviously I’ve got my blog, I’m really open on talk about my injuries, I don’t really care. Who knows what, but also the flip side of my blog is about the fact that you can overcome all of these things and have a positive and happy life, etc, etc, but a few people have said to me oh you know I don’t want to share your blog with my pregnant friends or with people I know that want to get pregnant, because I think it’ll frighten them. I said this is the problem that we have…that people patronize women, and they think that we’re not strong enough to take information. And I said, you know, I wish I had known all the signs and symptoms, were of a fourth degree tear this down right, the day after having a baby if I’d see brown discharge on my underwear out straightaway would have said, Excuse me, I am demanding to be seen I think this might be possibly to this species. This is not right. Yeah, the end of the day, it’s up to women, whether they access this information that they’re don’t not give it to them in the first place. 

P: No, I agree, I agree, more information is probably better to know, especially since you’re supposed to be your own advocate. Yeah, except to some degrees, it is on your shoulders, you know, no one cares about your health more than yourself. So 

G: yeah, exactly, 

P: you sort of need to do need to know these things and he would never tell like a cancer patient not to look at everything that happens when he had cancer. But yeah, absolutely. Yeah, absolutely. Yeah so I totally agree with your message. And going back to your blog, I don’t know what word to use, other than to say you’re an incredible athlete. I mean all the things you do I’m pretty risk averse and so I’m looking at the list of this skydiving in the triathlon,

G:  but I’m, I’m quite risk averse, 

P: your about to  swim the English Channel that doesn’t sound risk averse.

G: Oh no, I mean I’m nature frightened about the thing that skydivers off awful. Oh my gosh it was. 

P: So wait, so tell us about all this, so you’re, you’re not pursuing police work anymore and then and then how do you kind of turn it around.

G: I remember seeing on forums people describing their stomas, and saying, Every time I look at my stoma. It reminds me of a horrific reason why I have it, you know, most people have them as a result of bowel cancer or Crohn’s and colitis or whatever. And I remember reading that and thinking well I am not going to look at my stoma like that, because I haven’t saved. That’s going to every day of my life I’m going to be miserable. Yeah, because I’m going to have. So I thought right I’m not actively not going to think like that. So I accepted my stoma pretty early on in that way. It wasn’t until about two or three years down the line that I read an article by an athlete who has a stoma. And she said she had hers as a result of Crohn’s and Colitis, which is a really nasty disease in the, in the bowel, which people suffer, lots of pain for many years. Yeah, then they get a stoma, and it makes them a lot better. And she said you know I’m so thankful for everything that the stoma has given me..it was like a light bulb, and I suddenly thought, well, hang on, it’s all been about what the server’s taken away, took away my job, it took away my bond with my baby. it took away my lovely maternity leave. You know, it’s, it’s taken away so much. And then I thought, well no, hang on, I actually think about this, what does the stoma do why have you got the stoma. Was that right, well I’ve got it because otherwise I would be incontinent, I’d be pulling my pants. And if that was the case, I’ll be wearing adult nappies or diapers, or I wouldn’t I wouldn’t be leaving the house, so I thought, oh, actually. Look what it’s actually enabled me to do. I can leave the house and go for walks and go swimming and it was it was a revelation. So then I looked into it a bit more, and looked into what stoma products used to be like in the like the 1950s, and what we’ve got now these are amazing, but they’re so discreet and waterproof and you could just do whatever you want with a stoma so then as you start to think right. I am going to go out there and I’m going to do absolutely Every single thing that I’ve wanted to do, because I’ve had. Yeah, definitely. While I was completely incapacitated by the fistula and everything else yeah I just thought, you know, I’m not incapacitated anymore. I just need to get out there and make the most of the life that I’ve got. And that’s not right. Well, the first thing I’m going to do is I’m going to lose weight, cause obviously I was heavily overweight, so I joined as an indoor cycling class. I thought right well I could do that because there’ll be a toilet nearby. It’s not scary. So if, if I get absolutely exhausted after 45 seconds. I can just stop I’m not gonna be in the middle of the countryside. So join the cycling class, and I loved it. I was really unfit though I could only stand up like once on the pedals. But it was actually run by a local Triathlon Club. and I’d always wanted to do a triathlon, when I was younger, because I’ve always been pretty sporty, but I’ve always said you know I couldn’t do that. I couldn’t do that…far too tiring and but then I just started to think, Well, why shouldn’t you like all these other people do traveling, why shouldn’t you have a go and you actually now have the ability to do this, you know, just remember that year when you couldn’t even walk anywhere, or you can’t. And I thought right that’s it, I’m going to sign up to do a triathlon. So I signed up to do a triathlon sorted out my swimming and got back into running and cycling, I mean I wasn’t by any stretch of the imagination, spectacular, but I was able to do all these three things, and I went to this first triathlon and the organizers were fantastic, because they’ve never had anyone with a stoma do it before and I had like 10 million zillion questions about what happens if I got badly, and well I get disqualified about to go and change it and all these sorts of things and, you know, there were really kind and there was sort of saying you know this isn’t the Olympics, you’re not getting this, you know, it will be fine. So I went off and did it and I was just so I just thought right well there you go that’s one thing you thought you could never do. Do not cry describe life is like. It’s all about getting the little bricks, and that was like my first little brick. Yeah, so then I went to get my next little brick, and that was like the next stage talks on I did. And so that was after. After that, the tribe club on mass decided to enter a half Ironman, which is a 1.2 mile swim, a 56 mile bike ride, and a 13.1 mile run. I just thought I might want to get right I’m going to do it so I signed up to do it, but part of doing this. Half Ironman was I had to do open water swimming. Now I’m terrified of open water swimming about absolutely terrified. You will no doubt remember the ridiculous film jaws. 

P: Yes, 

G: which we all so, you know, I watched that when I was eight, and it terrified me out of the sea for 30 odd years. I had to face up to that fear really to do that section of it, and I did. I mean I went off and did my half Ironman. It sounds really easy but it wasn’t really hard, 

P: nothing about this sounds easy. I assure you…

G: And that was actually when I decided to come really public about my story and what has happened to me, because I decided to raise money for the birth trauma Association, So I went in the local paper and all that sort of thing and on the BBC Radio Newcastle and I was out there for the first time with my whole story, I raised 5000 pounds for the birth trauma association which was, I was really pleased with that was like the next brick. And the next one that I wanted to get was I wanted to get back my love of the sea. My love of open water because when I, when I was eight, I was actually learning how to sail, and I was like a little, I was like a little fish, I was always in the water. And I thought, You know what I want to reclaim that and it was all about getting back control over my life. Because so much that had happened to me had been out of my control, I lose my job and my injuries and all that sort of thing. And then I just thought, no, you know what I’m not having fear like me what I can and can’t do. So anything that I’m frightened of. I’m gonna damn well beat it because I’m in charge of my life. So I joined a local group of sea swimmers, and I mean it’s a bit of a joke between us all, because for a year and a half, literally a year and a half, I couldn’t open my eyes when my face was in the water, because if I couldn’t see what’s underneath me, I’d have a panic, like a panic attack. 

P: Yeah, 

G: I mean I went to the same beach, with the same people all the time, and they were all really really confident, and eventually a friend said, you know, if you don’t open your eyes in the water, you can swim into a rock, it’s actually a practical benefit. 

P: Yeah. 

G: Okay, so I then tried like three seconds at a time, five seconds at a time opening my eyes and, and then I did it when it was the water was really clear and then I could see that there…then just all of a sudden I don’t know my brain must have just got anything tonight. Okay, it’s fine. Fine, you can do this and I can’t get that really I mean I do still have a lot of fears of open water sample I would never, but I say never, I’m gonna have to swim on my own for the open water, and swimming in the dark… It’s really liberating and exhilarating and addictive actually overcoming things makes you feel really powerful. And the more that I overcome the more powerful, I feel, and yeah I just I don’t like to be beaten, really. A big part of it is, it’s showing my son that what happened during his birth hasn’t ruined my life by any stretch of imagination, you know, it’s actually ended up empowering me. 

P: how did you end up skydiving?

G: We only went skydiving, because my two friends were going skydiving, and I had a little thought in my head was, wonder what it’s like everyone says it’s amazing. And my husband said but Gill You cry on aeroplanes and you’re terrified of heights. Everyone says that. And I was like, Yep, I do want to get to like 80 and be like, Oh, I really wish I do not skydive so I mean I did it and I was completely hysterical before. I mean hysterical. And when, when I landed. it was being videoed, and the guy was attached to the guy that was filming that was some exit that wasn’t it was just awful. I’m sure I gave myself PTSD all over again. It was awful. But I did it and so then again I was just like well yeah, we go I never thought I could do that so well I just spent the whole winter in a bikini, three times a week in the North Sea so raising money again for the birth trauma association so that was something I never thought I could do stand out in the cold like that and get my stoma bag and public for everybody to see. So they were two more things I wondered if I was able to do was set that up. Good, gave me more confidence. Ultimately, I’ve signed up to like you said before from the English Channel solo, And I’d be the first ostimate to do so, but I’m saying that really blase but actually inside I’m quite hysterical

P: that this is an amazing list of accomplishments, how long is the English Channel. How wide is it. 

G: It’s 21 miles, but you end up somewhere about 25 Because of the current. 

P: Good lord and how long is it supposed that take 

G: about 14 hours. about…

P: And you don’t eat while you’re in the water. 

G: oh no,  you do. So there’s, yeah there’s really strict rules on what you do, so you have to wear a regulation size swimming costume. Basically nothing that covers like your legs or arms. Swimming cap, goggles. That’s it. And then once you’ve started swimming you’re not allowed to touch the boat, and no one is allowed to touch you. So to get fed, they get a pole, and they, they use it either a cup or a bowl or something, to give food to you and then you can get it out of there, but you can’t stop to feed for too long because the current so strong that you could be swept like 500 meters, which doesn’t sound like much, but 

P: who’s making rules, there’s a governing board?

G: the English Channel Swimming Association because you actually have to have a channel observer with you on the boat, making sure that all the rules are followed, it’s the pinnacle of open water swimming, and more people have climbed Everest than have swim the channel.

P: I bet, good lord

G:  Yeah, so when you swim the channel you, that’s a bold start at Dover stove is where you start off and there’s a board with people’s names on who’s from the channel. 

P: Wow. 

G: Yeah, so you don’t get to put your name on our board unless you follow exactly the same rules as everybody else so you really could do without all of that but wouldn’t be official.

P: That is totally amazing and it makes complete sense to me that more people have climbed in the Himalayas, which I’m superficially I’m sure it doesn’t seem as hard as it actually is although I think people can well understand how hard it seems to swim 25 miles in open water. I am totally gonna donate to that effort, I’m so excited for you. I’m very excited and a little upset that they will let you wear a wetsuit

G: Oh yeah, I know, no, that’s the challenge isn’t it. And this is what attracts me to swim in the channel as well as opposed to something like the Himalayas, because in the Himalayas, you can get to boots and somebody else, you can get a sherpa who’s going to carry all your stuff, you know like, there are ways to make it easier. Yeah. When you swim the channel, it’s, it’s you that you can’t it there’s nothing that you can do that is going to make it easier for you compared to somebody else, you know, other than your training and things like that it’s all down to you. So that’s why I find it so when you cross it, that is, that is your achievement obviously you’ve got your whole team behind you, so they’re part of that but it is you in that channel.

P: So, that is totally amazing. I hope they filmed part of it.

G: I am in the documentary I am being filmed for a documentary so no pressure at all

P:  good. Well, again, hopefully they’ll be good editing if it’s necessary. 

G: Yeah,

P: I am super excited for you. That sounds awesome. Your story is a prime example of taking the challenges of birth and being resilient with them and sort of turning it all around so I’m so appreciative that you share this story for us today, it is amazing and I think another thing that’s kind of really relatable in your story is that so many women get dismissed when they bring up pain or other elements in the birth that they found challenging, you know almost everyone has a story where that that plays some small role, where they say, Oh, is this, and someone says no, you’re fine, which has to be changed his crazy approach to healthcare, and as in the UK, the US the near misses, which are considered severe pregnancy complications, is like, on the order of 60,000 women every year. And here for sure it’s categorized hemorrhage or hysterectomy or some kind of clot that doesn’t count all the trolls, I’m sure if you counted everything that was traumatic it would be a much larger number. Yeah, but it is something that I think we need to we need to fix for kids.

G: Yeah, I mean at the end of the day with us. We’re the ones bringing the next generation into the world, so we need to be looked after we’re important. The mother is the cornerstone of the family, family unit and if we don’t look after our mothers that we’re not looking after our family unit, and therefore we’re just not looking after society, so it should be discussed it should be talked about and we should be supportive and we should be relieved. We’re not asking for much. But yes, asking for basic rights.

P: Oh completely and my guess is it’s even trickier in the UK because maternal mortality rate is really good internationally. Yeah, yeah, yeah. And that’s when people focus on,

G: I mean since I’ve become more public the amount of women that I know that have contacted me and have said, you know, gosh I had x y and Zed and, thank you so much for speaking out and you just think that so many women are just suffering, suffering in silence and, and the winter bikini challenge that I did, I had a sign on the beach saying I have a stoma, as a result of traumatic childhoods, I’m trying to raise awareness of these issues. The amount of women that stopped me on the beach and we, we didn’t necessarily have long conversations. For a lot of them, they just said, Thank you so much, and that’s all it says. And that’s all there. Needless to say, Well, they didn’t even need to say that but now, and that was countless women that I met, and I just think you know and I just live in the Northeast of England. But I think there is, I think there’s definitely gonna be more more of us being more vocal about it more prepared to Cooper first and, you know, breaking down the stigma of being so public about it and saying, This is not a failure of our bodies here. We’re not bad mothers because we haven’t given birth properly, that’s not nothing to do with that. I think that’s messages gradually getting through to women so that feel more able to speak up. Yeah, you

P: know, the alternative name of this podcast was gonna be, it’s only fucking reproduction. Yeah, right. Yeah. Yeah. To expect to do it seamlessly it’s just Yes, doesn’t even make sense right it’s, 

G: yeah, Yeah, exactly.

P:  So I totally appreciate your story, I will look forward to posting all, all the snippets I can from your site on in the show notes so people can follow you. Over this Thank you. I’m assuming we can donate to the effort just from the channel right sponsor you, or something.

G: Yeah, so it’s on my website which is www dot stoma chameleon.com It’s on the very first page of it, there’s a little bit of blurb and a link there to sponsor me. It’s actually on a GoFundMe, but you’re not giving me money to do this when all the money is good the charity and I’ve had to do it that way because I’m fundraising for three separate charities, so I was there any way I could do it. So the first is the birth trauma Association. Second is colostomy, okay. And then the third one is the Jacobs well appeal, which is actually really important to me because they send out products and supplies to countries like the Philippines, where they don’t have anything like that. You know kids are using things like plastic bags and tin cans and things like that, Lord,

P: yeah that sounds amazing. That sounds like amazing work.

G: Yeah, it’s so important so you know I just want them to have the products to enable them to live the life that it just even to go out and go for a walk. Yeah, so that’s what I’m fundraising for and that’s where you can find, find the details.

P: Thank you again so much for coming on to share your story,

 

G: but thank you very much for inviting me on very, very honest we’ve been outstanding you very much.

P: Thanks so much to Gill for sharing her story. You can find her at stomachameleon.com, and follow her quest to cross the english channel, and raise awareness and money for women who’ve experienced birth trauma, and for other stoma patients. Thanks also to Dr. matityahu for her expertise, and for alerting people to the occurrence of fistula, which she said is uncommon in well resourced countries, because if women push for 3 hours unsuccessfully, they can get a C section, but in under resourced countries women can push for days, which she said often leads to death for the newborn and life changing physical consequences for the mother. You can find her organization, beyond fistula at beyondfistula.org

Thanks so much for listening. If you liked this show, feel free to like or subscribe, or go to Gill’s page or dr. matityahu’s to get more details about the incredible work they are doing.

we’ll be back soon with another story about how women handle the challenges they face in their efforts to grow their family

Episode 24SN: Birth Before and After becoming a Doula: Keisha

If you look at birth over time, it used to be the case that women were always attended at their births by other women, and sometimes midwives, and these births happened at home. In the 1930s american women moved those births into hospitals, in part to pursue effective pain relief and the allure of more safety–but for a good decade it was not actually safer to have births in hospitals. And over the next 50 years the process of childbearing became more heavily medicalized–with benefits: lower maternal mortality rates and less pain in delivery. But by the 1980s, in part to push back on the increasing rate of C sections, doula’s started to attend women in the hospital–they were trained attendants who had been to other births and could advocate for a laboring women who was too involved in the process of birthing to also be involved in all the decision making…


Studies suggest that doula’s can have a very positive effect on a woman’s experience and today I’m excited to talk to a doula, both to hear about her birth experiences and her work.  And in fact, in this case, my guest became a doula in large part in reaction to her first birth experience…

You can find Keisha on Instagram @keishadoeswork or on doulamatch.net under Keisha Graham

Cervix ready for birth

https://www.healthline.com/health/pregnancy/cervical-effacement#effacement-vs-dilation

https://www.mayoclinic.org/healthy-lifestyle/labor-and-delivery/in-depth/stages-of-labor/art-20046545

https://www.healthline.com/health/pregnancy/cervical-effacement#diy-measurement

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6205862/#:~:text=Summary,occurs%20prior%20to%20spontaneous%20labor.

Giving Voice to Mother’s Survey

https://reproductive-health-journal.biomedcentral.com/articles/10.1186/s12978-019-0729-2

Nitrous oxide

https://academic.oup.com/bjaed/article/16/3/87/2897753

https://emedicine.medscape.com/article/1413427-overview#a2

Failure to progress

https://mail.google.com/mail/u/0/?zx=crujqgpvkn4o#inbox?compose=VzqbCVPFZTlKDkdWzQFWSZGzChwXsZQzTKrHFdVnLdNKtWgkktZwtzNtHsGSVctmfVtdrMwNGVnWVLncFqcvtLQPZbXkrQXTSzWmSXJMzPBKFkZJhBcDqMxFMtMLKLHRplfKTjdgxhrWvkhRjBQstVkcPMFkspmQgqlMVdkWSmjrZZRctZLVzdzfvGjvjTLGbflmzBMcNmCdMsPqQqfwgjvnQqzDLXhZzlXRSRRjPnhtCQGwgfhllgSC

C section risk versus risk in a vaginal delivery

https://www.mayoclinic.org/tests-procedures/c-section/about/pac-20393655

Biggest C section risk: your hospital

https://www.consumerreports.org/c-section/biggest-c-section-risk-may-be-your-hospital/

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. I didn’t have a straight path through any part of the process of growing a family, and my experience was complicated enough that I never considered a doula, in part because I had no choices to make at the delivery, all those choices were being made by doctors. 

But if you look at birth over time. It used to be the case that women were always attended at their births by other women, and sometimes midwives and these births happened at home, in the 1930s American women move those births into hospitals in part to pursue effective pain relief, and the allure of more safety for a good decade it was not actually safer to have births in hospitals but that evened out. And over the next 50 years the process of childbearing became more heavily medicalized with benefits, lower maternal mortality rates and less pain in delivery, but by the 1980s in part to push back on the increasing rate of C sections doulas started to attend women in the hospital. They were trained attendants who had been to other births and can advocate for labor woman who was too involved in the process of birthing to be involved in all the decision making. 

Studies suggest that doulas can have a very positive effect on women’s experience, and today I’m excited to talk to a doula both to hear about her birth experiences and her work. And in fact, in this case, my guest became a doula in large part in reaction to her first birth experience.

 Let’s get to her story. 

Hi, thanks so much for coming on the show, can you tell us your name and where you’re from.

Keisha: Yeah, my name is Keisha Graham and I’m from Richmond, Virginia. 

P: Great….And Keesha How many kids do you have, 

K: I have two, two girls. My oldest is 12 and my youngest is six. 

P: Oh nice. 

K: Yeah, we’re a household of girls so no one knows how old we are, we all lie about our age.

P: Excellent, good as long as you keep in the family, it’s perfect.

K:  Exactly. 

P: So before you got pregnant with your first, he wants to have some idea about what pregnancy, like, what were you imagining it would be like?

K: The only thing I knew about pregnancy before I gave birth was what I saw on TV, and I had a cousin who had a baby a little bit before I did she have two babies actually and I had spent some time with her like her husband was deployed so I went to her state and helped her raise her two little kids but I didn’t see her, Like be pregnant I knew kind of what raising a family was like, but pregnancy was kind of like foreign to me, except for what I saw on TV.

 

P: So does that mean that you’ve thought it would be easy or, you know, you’d be gorgeous the whole time or

 

K: I didn’t, I didn’t go in, I’m somebody who just doesn’t go in with anything with any high expectations, so I thought that if there was anything that I needed to know I definitely would get it from my provider or, you know, my mom or my grandma would tell me or my cousins, I just thought that it would be simple and like straightforward. 

P: Okay, that’s a good setup. Alright, here we are. So, did you get pregnant easily the first time?

K: Yeah, it was an oops, 

P: I’m glad. I’m glad to meet an oops because you’re the story we’re all chasing right? everyone thinks like…. so good that’s true in some cases. 

K: The first one is easy but the second time is hard, is the second time we were planning and it took a while. 

P: So let’s focus on the first one, and you found out with like a pregnancy test I assume like a home kit. 

K: Yep, I went to CVS, I find out that I always find out that I’m pregnant pretty early. So on my lunch break, I went and got a pregnancy test and took it and, you know, text, my boyfriend, my husband now that we were having a baby. 

P: Oh wow. 

K: Yeah.

 

P: And how was that first pregnancy, what was that like?

K: it was pretty easy, it was pretty straightforward. I had no sickness had no complications. You know, it was the ideal pregnancy, you know, heartburn, that was the biggest thing that I think I threw up once.

 

P: Great. So far this is great, this is going great…so take us to the birth and like, are you 40 weeks and I myself, maybe I’m the only one I didn’t know what a contraction would feel like so I didn’t know I was having contractions when I was, like, tell us that whole story.

K: My birth story. Yeah, is when things get different, so yeah I thought I was going to get everything from my provider, I trusted my provider. So my due date was December I think it was the 16th and then I think I went to my 40 week appointment on the 22nd. And so they did an ultrasound, and the ultrasound tech said, your fluids are a little low, but nothing to be concerned about. I went to see my OB, and she was like, Do you want to see your baby today, and I was like, Sure, 

P: yeah. 

K: And never told me anything about what my cervix was doing if my cervix is ready to be born.

 

P: Okay, what does your cervix look like in labor in early labor your cervix starts to open or dilate and it stretches and gets thinner which is called a placement or softening or ripening. If your doctor is testing the readiness of your cervix, it will be closer to ready when it’s softer as labor progresses the cervix which is about four centimeters long, thins to the width of a piece of paper, and will open from the width of a blueberry to the width of a melon about 10 centimeters, you’ll be given the go ahead to push. If you’re being induced doctors may use drugs to ripen the cervix, that try to mimic the hormones, your body will produce to get that job done, and the hormones cause the cervix to thin and your uterus to contract

K: that inductions sometimes take a while, and mines ended up being two and a half days.

P: Oh my God, that’s a long time. So, so did you get to like go home and get your stuff and then come back to the hospital or how did that go

K: No, I just went right up to labor and delivery, my boyfriend was supposed to go to work that day so we had to pull out of work. I had my mom bring my stuff up, and you know, We thought it was gonna be pretty quick. She said, Do you want to see your baby today so I thought, you know, maybe midnight I would at least, you know, have a child.

P: Yeah, today implies today. I’m with you. Yeah, so they get you in the hospital room. Did they put you on Pitocin or what was the process.

K: So that part’s, it was a blur. So I started with a servo, I do remember I started with some Adele, and it was hard, just like any cervical ripener, it was sharp and crampy. And I wasn’t given like the option of what drugs, I could take or what my options were at that point, everything was just. Here you go, this is how we’re going to do it, do you want me to refill your water, so I started with cervidil  and after that took a while, that took a long time and then

P:  I had no idea It felt like anything. 

K: Yeah, it feels like cramps, it feels scratchy on your cervix. Well, this was my experience, it was scratchy on my cervix, and I felt it being there, and then I felt like really strong crampy sensation after, 

P: so uncomfortable is what it sounds like, 

K: yeah, it was terrible. 

P: And then what happens next. 

K: And so then, at that point I get Pitocin. And then, I was on Pitocin for a while, and then after Pitocin I will while I was on Pitocin. I ended up getting an epidural.

P: Did your contractions start with Pitocin like does that work.

K: Yeah, I think, with the cervical it was working for a little bit but they weren’t as strong and then serve it only takes you, but for, you know, so far, it only like ripens the cervix is not going to dilate the cervix so at that point after I was as ripe as I was going to get I guess they were like Pitocin is next. Sorry, I was in a while. 

P: And what was that like, 

K: pitocin was hard but then I got an epidural. So, everything, where everything else that I felt physically was fine after that point. So I have a lot of introduction like interventions. After that point, and you know I kind of breeze through them, it was pretty simple.

 

P: So they give you the epidural and then and I just kind of waiting right till you’re dilated enough.

K: So the nurses come in again. They like roll check your cervix after X amount of time they check it it’s not where they want it to be so they introduce another intervention. So then after the Pitocin. I get my water broken, actually, with this birth, it wasn’t like there was no consent, it was, I’m in here. I’m gonna break your water, it’s done.

P: I’m already feeling like this is a bummer because this doesn’t at all sound like, do you want to see your baby today, like it not just that does not, I would not feel and that’s what this means, right,

 

K: it’s in a baby factor you know we need a bed, so we’re gonna do all of these things, so that we can open up the spin, but you’re not going fast enough, you’re not on our time clock so this is what we’re going to do.

P: Yikes, so, so do that, are you there for a full day before they break your water or how does that all go.

K: Water was broken, the next day so I did the cervidil and the pitocin from the first day. Yeah, and then chosen overnight and then my water was broken. The next morning, 

P: and then it sounds like you labored that whole day. 

K: Still laboring day. At that point you know they’re just cranking up the Pitocin. Yeah, just to get my contractions where they want it to be. And that’s the second day.

P: : And then can you feel that or has the epidurall worn off at this point or

K: no it’s still going, and I had a really strong epidural one stronger than what I needed. Yeah, so I’m just lying in the bed like no one’s telling me that I can move like what I know about labor now is that even with an epidural, you can move a little bit, and that helps progress the labor, no I was kind of just laying there, waiting for the staff to do something next to me. I didn’t know if he like an active participant at all.

P: Yeah that doesn’t sound pleasant Good lord, so then…now you’re there for two nights. And then what happens the next day.

K: The next day is Christmas Eve, and my doctor comes in and says well you have to have this baby by noon because I’m going on vacation. And so I’m just like, look at her like, there’s at this point I’m already feeling defeated, I’m already feeling like, you know, you’re just doing stuff to me you’re not telling me what’s going on. Not knowing that I could ask questions because this was my first hospital stay, it was, you know the first time, yeah that I’ve probably ever been in the hospital I don’t think I’ve ever like this had to visit anyone in the hospital. So you don’t know what questions to ask you don’t know what you can say to your doctor, you know you’re looking to them as the, as authority figure at this point, and that person comes in and tells you that you’re not working on their timeline, and it just feels so defeating

P: that I have to say that’s crazy to verbalize I’m going on vacation and you have to go. I can imagine someone’s thinking that but not saying,

K: yeah, it was Christmas Eve, and it’s like my family just Christmas he really big like we all get together and I just thought that I would be home with my baby. 

P: Yeah 

K: because you told me I think my baby today, so she that’s what happened that day, she told me, I’m leaving. At this time, and so she left. At that time, even though we were just continuing to wait I didn’t have many other interventions at that point, they did an internal monitor right before I started pushing my baby’s heart rate was descending. So they gave me an internal monitor, and then it was time to push and I pushed for two hours. Yeah, they got pushed for two hours just about a vacuum was used to get my baby out, and then she was born. When she was born she was brought to my chest, but I didn’t want her there, I kinda was like, no, just because I wasn’t feeling anything like I knew that after you give birth, you’re supposed to feel all these things, and it’s supposed to be this like beautiful moment but I didn’t feel like that. So I, you know, told them to take her over to the warmer, and you know I saw her from there but I just, it just didn’t feel right at that time because of everything that I went through over the last two and a half days.

P: Yeah and it from the stuff I read if you have Pitocin but you aren’t producing it yourself. It’s a totally different. You’re in a totally different mindspace right if your body was producing Pitocin you would have gotten it in your brain, which helps with the connection. But if we’re getting it artificially 

K: Yeah,

P: you’’re not getting that right so

K: right, we are my girl I work with likes to say it’s called like the Oscar award winning speech after you have the baby you have like this, oxytocin high does oxytocin rush so you’re like, thinking everybody you’re checking fingers and toes you’re doing all of these things, because, you know, oxytocin does that to us. That’s why they call it like the love hormone, but yeah Pitocin doesn’t it just brings on contractions, it just does what it’s supposed to do. Give you contraction, Stop hemorrhaging.

 

P: Yeah, so it sounds like. It makes sense how you are feeling right like you’re responding to everything that has happened over the last two and a half days which is just disappointing. And but the baby’s fine. 

K: She’s fine, she was healthy 12 fingers 10 toes. She’s amazing and she do

P: How long do you guys stay in the hospital after that,

K: we stay there for I think two days. Yeah, we went home on the 26 I nursed you know her, she was a great nurse or it was fine, but yeah I’m sent home with this baby, and trauma from my experience in my labor.

 

P: And did you recognize it in the moment, like, did you think oh this was traumatic.

K: Oh, no, it wasn’t right, but I didn’t think that it was traumatic and so after processing my own postpartum depression and postpartum anxiety that I had throughout the time, like my postpartum period.

 

P: Well that sounds really hard from the stuff I’ve read it looks like one in seven women have postpartum depression. And somewhere, I think in the Cleveland Clinic I read some article that said, it’s the most common condition of childbearing. 

K: Yeah, oh yeah, it’s really up there. 

P: So, did you recognize, like in the fourth trimester that you were having postpartum depression or did you just think, oh my god, this sucks.

K: The postpartum anxiety was the thing that postpartum depression didn’t get to me as much as my postpartum anxiety did. I had very bad intrusive thoughts, and I kept saying to myself, This isn’t normal. This isn’t normal but I didn’t have anyone to talk to about it. I had a trusted network of friends, I didn’t have a professional that I could go to about it. I wanted to talk to my doctor, but I didn’t like her. 

P: Yeah. I bet

K: And then we would do screenings at the pediatricians appointment but I didn’t feel that I can talk to them about it as well, or the things that I did say they were like yeah that’s just baby blues, but by the time I really realized that I had postpartum anxiety I think I was, I was well out of it, which is great but also could have, it would have been beneficial for me to get help sooner or couldn’t recognize the signs sooner. 

P: Yeah, that’s the story I hear from a lot of women. I think it’s hard to recognize while you’re in it, because you’re busy being anxious or you know whatever right so and so did you become a doula between the first birth and the second birth or tell that story.

K: Yup…I became a doula between the two. So after my birth experience, I went to births with like friends and family, just as someone who had seen it before, because I, when I gave birth in my early 20s I think it was 21 when I had my daughter, so by the time my group of friends, like started to have their own children, I had already been there done that so I wanted to go with them to just help them out, because I knew my experience wasn’t typical or should not have been typical but found out that my experience was, was typical, 

P: I was curious about how common it was for women to have bad birth experiences, like the one Keisha described, and found a giving voice to Mother survey published in 2019 that sought to better understand women’s lived experiences giving birth.  The survey didn’t include a huge sample but it was just over 2000 people. And basically what the researchers found was that one in six women who filled out the survey were mistreated in some way during this very vulnerable period, during and after birth, they reported issues like loss of autonomy, being shouted at scolded or threatened and being ignored refused or receiving no response to requests for help, and the factors is associated with a lower likelihood of mistreatment, so you’re more likely to have a better experience if you had a vaginal delivery, a community birth a midwife, you were white, you’d have a baby before you were older than 30 years old.

K: I knew that that couldn’t be right because it’s not what I saw on TV. That’s not how I saw, you know, whoever on Friends give birth, is that how I saw like white women being treated. So I had a friend who told me she was like well you should be a midwife. And I was like okay that sounds cool and I looked online and saw that that required a lot of school and I was like, No. So then I had the same friend said well you should be a doula. And then I looked at that and I was like yeah doula work is more my speed. It’s something I really want to do.

 

P: So tell us how like has it, what’s that like was the training like and, and what was your experience and

K: that the universe like really lined up for me to be a doula after I found out what doula. What a doula was, I was working at a location that was recording podcasts for a doula training organization to labor. And so we just happened to be in the same space where I was talking about it. And the owner of that organization was there and she’s like yeah you should come and do one of our trainings. And so I looked it up and they were local so I did the three day training to become a birth doula. It took me a while, but from the time that I decided that that was something that I wanted to do till the time that I took the training. It took me a couple of years, but I think I was going to births I was doing the work, and I think it’s nice seeing that people weren’t being treated the way that they should and labor was really what gave me that momentum to say okay yeah I need to do this work. I actually attended the training after my second labor. 

So my second labor I changed providers. It was my third pregnancy. So as my second pregnancy I miscarried and I miscarried pretty early, but I had changed providers pretty early with that pregnancy, and then I had a provider, that was so amazing so supportive. I remember when I did miscarry pretty early, she, you know, I mean my husband come in her office, and I remember like crying in her office and she and I told her I said something like, I know you have other patients to see today and we’re leaving to get out of your hair and she’s like, No, you say, and process this, however you need to. And so I just knew that this was the person that needed to deliver my kids, any more than I have after this. So then, 

P: that sounds lovely 

K: yeah she was amazing. I still love her.

P: So we’re so this is the pregnancy where you said it was hard to get pregnant, this time.

K: So it took a while for me to pregnant again and but I get pregnant again. And, well, I thought it was gonna be so easy because the first few times were so easy, it was just like, they just happened…. the one I was really thinking about it, like I was going to try again, it took it took a while, so we got pregnant. A year later, and yeah, had a very empowering labor I still had lots of interventions, but I had a provider that made the time to tell me my options and my choices, and gave me the power that I needed back into my labor. 

P: So maybe what walk through that slowly so, so people can see the difference between the first and the second. 

K: I had a lot more information in the prenatal period, I was more than just my blood pressure my fundal height peeing in a cup and then asking if I had any questions. She was very forthcoming with all of the information that I needed to know just by asking me, Hey, have you taken any childbirth education classes do you know where to find them. These are the options that we have here in our office, but I’m sure there’s some more around, you know. Feel free to go look. She was telling me about my baby how my baby was growing, the things that I could do, you know, to help my baby grow, just a lot of information in the prenatal period. So I felt safe. When I went into labor. I just knew that I was going to go into, into this through an induction because I was induced last time so I just knew that I was going to be induced. But I ended up going into labor on my own at home and I stayed home for as long as possible, which was something that I didn’t think that I could do, but my provider made me feel really comfortable in doing that. But when I got to the hospital I was in active labor. 

P: Oh wow, really well. 

K: Yeah, I progressed really well. And then, at six centimeters hit a wall, I was like, No, I don’t want to do the same or it’s 2021 Give me all the drugs, or it wasn’t 21 it was 2014 Give me all the drugs so I have been told that it was, I will actually, before the epidural, I get Nitrus nitrous oxide.

P: Nitrous oxide, otherwise known as laughing gas is a form of anesthesia that you inhale, it sounds like it’s a pretty weak form of anesthesia, it’s usually used in pediatric dentistry, to give you a sense, but it does do something and it works quickly,

K: and that held me over for a while, while I couldn’t get into the shower, so I had to come out of the shower every hour or so for monitoring of the baby. I think at that time this particular hospital didn’t have wireless monitors so I had to get out of the shower to come get monitored, and so that was very hard, like contractions are really hard when I was out of the shower. So at one point I didn’t want to keep going back and forth so they gave me a nice choice, and that was really good pain relief option, and then the tank ran out. It was, I think I was probably like the second person in the hospital to ever use it or something but they were telling me it was very new to the hospital system at this time. So the tank right now, the nurses, even know how to use it at first, it was a mess. But it was helpful when I was able to use so after it was done I said I’m going to get an epidural. And then I got my epidural, and labor beautifully after that, I don’t think they needed to break my water until the very end because I had just a little bit of space left my baby was Opie which is occiput posterior Sunny side up. So, my cervix didn’t dilate all the way. So she was looking up instead of looking down when she was supposed to be, you know, the other way. 

P: Does that, does that mean a C section or 

K: No, no, sometimes it means longer Labor’s, and then in my case, it meant that my cervix didn’t dilate completely. Uh huh. It dialated, almost completely. So she broke my water to help try and get it to dilate more was like, like a half a centimeter, I guess, of dilation that needed to happen before they wanted me to start pushing, so she broke my water because of that, and I was like okay with that because she said either we can wait a while, or we could break your water, she gave me both options. And I was like no I’m tired. So let’s go ahead and do this, she broke it, we still waited a while, nothing happened. So we kind of just pushed past that little bit of dilation, which was fine. and I the second kid was born in 15 minutes. 

P: Oh Wow, well done.

K:  It was like three pushes 15 minutes is very quick. Yeah, so when it was time for me to push, I remember my doctor was sitting on the bed and saying, you know, all right, go ahead and push and I was like well, don’t you want me to put my legs on the stirrups Don’t you want me to do all of these things she’s like No, I’ll just do whatever you want. And that was just so empowering. It was just the greatest moment ever. So, I had a birth, that was traumatic but also had one that was so rewarding and empowering and I knew this is the type of birth that everyone should have.

 

P: That does sound like a story book kind of birth, where you’re making all the choices. 

K: Right. 

P: Yeah, that’s amazing. So now tell us I was saying to you before when I was having children, I don’t know if doulas were a thing or not but I, I was not aware of them. So give us a sense of what you’re doing for other people because I can’t, I can’t really imagine, doctors, kind of backing down if they’re if they’re sort of not approaching appropriately. 

K: Yeah, advocacy advocacy work is what I do, it was one of the things that led me to doula work was being able to, you know let people know of their options and their choices when they feel that they don’t have any or letting them know that it’s okay to ask questions. I never want to speak for anyone but just saying, you know, maybe there is another way, just ask, because you can ask questions to your doctor, and that’s okay. And they should give you that information. Consent is very important in this work as well making sure that everyone has informed consent for everything that happens throughout pregnancy, labor delivery in in their body and with their baby Afterwards,

Doula work is a lot of educational support in the beginning, especially, I mean, bindable free care, when you’re in the midwifery program it were free model care, you do tend to get a little bit more information than those who birth with an OB But yeah for those with an OB but or actually anyone in general really is just giving them evidence base, up to date information on whatever it is that they are going through in the pregnancy journey at that time, or that you may think that they need to know it’s anticipating folks needs as well.

P:  I’m guessing that you’re, you really shine in the labor and delivery room right because that’s when I think for sure for your first birth, most women don’t understand the degree to which they’ll be compromised when when everything’s going down right like all of a sudden you can’t really speak for yourself because you’re in excruciating pain or whatever you don’t know what’s going on. So, is it the case that like you’re having the talk with the mother or and then she’s communicating to get into the doctor like how does that all work.

K: We all talk together like I have no problem asking questions why providers are in the room where you know sometimes people might want a little bit of privacy or something like that to have conversations. I don’t know if we talk prenatally about some common complications that may come up and how to address them, giving you all of the tools that you need creatively to ask the right questions if something comes up, and then reminding you that you have those options to ask questions in the moment you can always ask, what are the benefits to this, what are the risks. Are there any alternatives. And then also, mostly advocating for more time for people.

Very rarely are people rushed into an emergency C section where they’re pulling cords out of the wall and then brushing them back to the or anything outside of that I’m always advocating for people to ask for just a few moments for them and their partner to talk about what’s going on, or to process what they just heard, so that way they’re not moving into the next steps with any doubt or worries, which they may still have but at least they have some, a little bit of time to process everything that’s going on and they can confidently move into that next step.

P: And you talked a little bit about your birth versus what you had seen for white women. I interviewed a woman at the Center for American Progress, and she works on maternal health issues among other things, and she was saying that for black women, the ways that racism finds its way into the delivery room are not always overt. So it’s not always like an obvious thing like, I don’t know that this woman was being racist with you but that’s an outrageous thing to say to a laboring woman…I don’t know what the was driving that her treatment of you but I wasn’t there but, but I’m imagining most of the circumstances are not quite as upfront as that.

 

K: Right, yeah, yeah, it’s, you know, biases that, yeah, yeah, that’s the face that people of color face when they are in labor. It’s a lot of, I don’t want to say the same type of stereotype, only because I am used to it and I, because it’s lived experience for me so I know what to look out for, but it is a lot of not ignoring or ignoring folks of color, their pain or their pain tolerance or thinking that they are exaggerating when they’re saying that something is wrong with them. It is a lot of ignoring their needs, and, you know, attending to the needs of someone else, ahead of them or something like or a white person’s needs, I should say, versus a person of color,

P: so in that instance you can go in like advocate for them and say no, she really needs another epidural or whatever like more.

K: Yeah. And luckily, I mean, The good thing about being a as a doula being able to see both sides and being able to be in the room for all types of people is that I can say, well, if they, if I have a nurse or a provider that says oh this is not how we do things here I can easily go back to experience that I’ve had with a white person is a well, actually this is how you did things how you’ve done it before, and this day and time, look at my notes. But

P: That seems super, that seems super powerful. That’s a great, great leverage to have.

K: So, yeah, it’s nice being able to advocate for folks in that way to say, you know, if they say, This isn’t how they do things I know that they do them, the opposite way,

P: I can imagine that is an unbelievably frustrating thing to hear when you’re in the mix and your client is in pain and need something right. 

K: Yeah, 

P: that sounds like a lot, so how long have you been a doula for.

K: So I’ve been professionally trained as a doula for four years, but I’ve been doing the work way before that.

P: That’s cool. So I bet you’ve been to a lot of births.

K: Yeah I think by the end of this year I will be probably well over 100 births. 

P: Wow, that seems like life affirming work. 

K: Yeah, it’s pretty exciting right. It’s always exciting, it’s always something new, 

P: and I’m imagining again when I was having kids there was no skin to skin, there was no like delayed cord clamping and that sort of stuff so it’s probably cool to be in a field where there’s constantly new and different things coming out.

K: Nice to be in a field where we’re bringing things back to the family, and out of the medical complex out of the doctor’s hands and bringing it back to the family like the skin the skin the delayed cord clamping. I even advocate for fathers to try and catch their babies we talk a lot about that. 

P: Oh, that’s cool. 

K: Yeah, because, I mean, they mean my job is to make sure that partners, I should say fathers, but partners are active participants in their labor as well like this is a family events, and not something that doctors have to oversee completely.

P: That’s super cool and I know that my husband had no idea what to do, I mean I had c sections but he’s still like, I want to go hide in that corner and you call me, so it’s nice to have someone who knows what he’s doing to kind of guide that process.

K: I think that I biggest, another one of my biggest roles is normalizing the process as well, so that partners don’t have to worry so much about advocating and, you know, answering all the questions and knowing all of the things, while the birthing person is in pain in going through their stuff. So I’m able to be like oh, that’s normal. Yeah, she’s throwing up, that’s okay.

P: Yeah. Don’t mind her yes that’s very funny. I thought that most states don’t allow insurance to cover doula services is that your experience. 

K: Yeah, in Virginia, we don’t take like the insurance companies don’t cover the list services. There are current bills being passed or laws going into effect, that where doulas can be covered by Medicaid. But I haven’t seen much where doulas are covered through private insurance. A lot of folks can use their HSA or their FSA account to pay for doula services, okay. Yeah, medical insurance.

P: That’s super cool. That is very cool work and it’s a totally interesting way to go into it right to have had your experience and think like I can fix this. 

K: Right, yeah, 

P: God how rewarding that’s cool. So, how do people find you if they’re in Virginia, the Virginia area, I’m assuming you don’t work outside of Virginia.

K: I do virtual work. Yeah, I mean this pandemic has opened up so many lanes for doula work since a lot of hospitals were closing their doors to doulas, we still needed an avenue to get into help families, so we do virtual work so I do virtual doula work for anyone, anywhere. If they need a doula. But if you are in Virginia, and you’re looking for someone local, you can find me on Instagram at Keyshia does work, or on doula match dotnet, and under my name Kesha Graham,

P: so that’s awwesome, I’ll put that on the show notes so people can find it. What’s it like to be virtual for birth, or do they have you in the labor and delivery room like on phone.

K: yeah, I mean FaceTime or we can check in every now and then where we can ask questions, if it’s really tailored to whatever it is that you need but yeah I mean I’ve done like FaceTime, where I’m just like on a tripod. Like, you got it. You can do it, you know it’s a lot of coaching at that point but also reminding families that you know they have choices they have options they have power in their experience and they should wield that power.

P: That’s amazing. And I can imagine, if I were in the circumstance where I actually had to push a baby out. I would probably trust you more than my husband because you’ve seen it before. Right, yeah. You know I can do it. He’s got no idea. So that’s super cool that’s an awesome job.

K: Thank you. Yeah, I love it. It’s really amazing. I love I love seeing families, work together, I am of the same like mindset that you are like, let the doula handle it. A lot of a lot of partners really get this like power inside of them that they don’t know is there when they’re faced with their partner going through something really hard that I really like to see. Yeah, I like the best births and when I just stand in the corner and get to watch families do their thing.

P: That’s amazing. What’s your ideas about C sections and like the stuff I’ve read is that, you know, there’s obviously serious surgery and you’re much more at risk to have some kind of complication if you go through a C section. And the other thing I saw that was kind of damning said the biggest predictor of whether you’ll have a C section or not is the hospital you’re in, as opposed to your medical condition. So that’s suggestssomething wacky is going on, what’s your experience because C sections of do you try to turn them around or how do you deal with that.

K: I’m not there to give anybody medical advice.

P:  Okay, 

K: so if the doctors are calling for a C section, you know, the only thing that I am able to do within my scope is to have the family ask questions and then help them come up with the questions to ask to see if it’s a true emergency or if they have a little bit more time, my own opinion on C sections but they are here for a reason. But with the current rates of C sections in knowing that there isn’t this big decline with mortality, mortality and morbidity, then we still know that C sections are being over utilized

P:  Yeah. 

K: From what I see sometimes I feel again me as someone who only took a few day training and has attended a limited amount of births I feel that sometimes you know, maybe things just need a little bit more time. And then I do feel that they are a little bit rushed, but, you know, again, I’m not a medical professional so

P: yeah I mean it just you’ve heard these stories where like the baby’s not in distress or anything. And they have a C section and you’re watching like any there’s the mother, so

K: that’s why provider choice is so important. That’s why place a birth is so important there is a thing of birth culture, like, your hospital is going to have their own individual birth culture, culture, so it is important to talk to families who have birth at the place of birth, where you’re going to birth, and have been with the provider that you’re going to see when weighing those options about C sections and I think it’s important for everyone to talk about C sections because we don’t know who is going to need a surgical birth, versus, you know, a bachelor one,

P: I assume there’s no like scorecard where you could see kind of what your hospital does, or is there some way to evaluate the, the environment you’re about to go into

K: some states have C section rates listed on their state website or you can find it on the hospital website, But sometimes, information if it looks kind of unfavorable it’s kind of hush hush so you kind of have to scour the internet and the message boards to find out that information,

P: but but usually someone is keeping track of that, so

K:  it’s out there is out there, but

sometimes it’s outdated I think for in my seat I think some of the information is a couple of years old.

P:  Okay. Okay, interesting. Well, that’s also a good idea. So reason number 87 to get a doula is to be made aware of all these things that you should be checking on. 

K: Oh yeah, definitely for sure. 

P: Thanks so much for coming on, I totally appreciate your time and your story. 

K: Thank you. Appreciate it.

Episode 23 SN: One Woman’s Story of Surrogacy: Cheney

In this episode, my guest tells her own story of pregnancy and she shares her experience of being a surrogate for another family.  It is, as you can imagine, a very involved process in part because it involves IVF, which always sounds to me like a full time job. Despite the fact that the pregnancies were relatively straightforward, there are challenges along the way, like postpartum depression, which can make other issues that come up more daunting to manage and we discuss those, too.

Tests to verify that your water has broken

https://www.healthline.com/health/pregnancy/premature-rupture-tests#diagnosis

https://www.qiagen.com/us/products/diagnostics-and-clinical-research/sexual-reproductive-health/maternal-fetal-testing/amnisure-rom-test-10-min-us/

Epidural

https://pubs.asahq.org/anesthesiology/article/129/3/448/22292/Maternal-Body-Mass-Index-and-Use-of-Labor

https://pubmed.ncbi.nlm.nih.gov/15477051/

Surrogacy

https://www.cdc.gov/art/key-findings/gestational-carriers.html

Surrogacy laws differ in different states

https://www.thesurrogacyexperience.com/u-s-surrogacy-law-by-state.html

https://www.hatch.us/blog/best-worst-states-for-surrogacy

Postpartum depression

https://www.mayoclinic.org/diseases-conditions/postpartum-depression/symptoms-causes/syc-20376617

https://www.webmd.com/depression/postpartum-depression/early-warning-signs-postpartum-depression

https://www.webmd.com/depression/postpartum-depression/postpartum-depression-baby-blues

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. I had trouble getting pregnant and being pregnant, and at some point my husband and I considered using a surrogate. Although we ultimately didn’t end up going that route. I’ve always been interested in surrogacy. Maybe because when we were repeatedly failing to get pregnant, it seemed like such an amazing thing for one person to do for another. So I was particularly interested to talk to today’s guests. 

In this episode, my guest tells her own story of pregnancy, and she shares her experience of being a surrogate for another family. It is, as you can imagine, a very involved process, in part because it requires IVF, which always sounds to me like a full time job, despite the fact that the pregnancies were relatively straightforward. There are challenges along the way, like postpartum depression, which can make other issues that come up more daunting to manage, and we discussed those too.  After our conversation I went back into the interview to add information about medical issues we discussed.

Let’s get to this inspiring story. 

Hi, thanks so much for coming on the show, can you tell us your name and where you’re from. 

Cheney: Hi, yes. My name is Cheney and I’m originally from San Diego, California. I’m currently in Louisiana, however,

P: wow, that’s a big shift. 

C: It’s a huge shift.

P:  So let’s talk about pregnancy you have a really interesting story in part because you have the experience of a surrogate and the experience of having your own child, which I’m totally interested in.  My husband and I, at some point, were thinking about using a surrogate, because I have all kinds of medical problems, so I’m interested to learn from you. Why did you get into surrogacy. What did you imagine pregnancy would be like and, and we’ll get into like how it was different as a surrogate and bearing your child for yourself. So why don’t you tell me first. How did you get into surrogacy?

C: My now ex husband and I, we, he was in the military. So, you know, we moved around, and I was a stay at home mom with my one child, and we had friends of ours that she had done a few surrogacies And she was like, you know, it’s such a great way for you to still be able to stay home and make money. 

P: Yeah, 

C: right? and she’s like if you had an okay pregnancy. If you know, because she knew like I didn’t want another one I was kind of a one and done. So she knew I didn’t want to have another one so they like need for another baby wasn’t really there, so she’s like I think that you would be a perfect candidate because you know it is a great way to make a little extra income, I mean yes you are having a baby, but you know it’s just a good way to get a good chunk of money to pay off some bills and things like that so that’s kind of how it got started was just like a friend of ours was like, I’ve done it, she’s like on her third baby now and like, she’s like, it’s so great and fulfilling and you know all the stuff and I was like sure, like, let’s do it.

P: So that’s super cool and I could see, I mean it’s an amazing thing to give to someone else so I could see like why you might be attracted to it, but, but then let’s hear about your pregnancy first because this must be what, in some ways convinced you that this would be a thing to do. So before you got pregnant the first time, what did you think pregnancy was going to be like?

C: I didn’t really know. I didn’t really hot like my sister was pregnant, she had twins, the first go round. So I was like oh man if I get twins, that’s gonna be hard, but, um, but yeah I didn’t really like have any expectations I didn’t really know what to expect, what not to expect just like things that my sister had been telling me, you know, I asked my mom how her pregnancy was, you know, a few friends of mine, and they all were like it was fine. I didn’t have any issues you know yeah morning sickness sucks but then it goes and it’s just like it’s fine, you know like they went about their merry way and it wasn’t like a big deal. So, I was just like okay cool, it seemed really easy, I guess, to get pregnant, nobody in my immediate group had trouble getting pregnant, so the IVF and all that stuff I didn’t know about any of that because I hadn’t experienced it, so 

P: that’s a good entrance right like yeah, you know, it’s good,

C:  it’s easy. Yeah, my sister had to write that in there first time and I’m like okay, we’re fertile, you know, 

P: yeah, exactly.

C: So did you get pregnant easily.

C:  The first time I did, yes. Yeah,

I stopped taking, I was on birth control. I stopped taking it. I get I did all the, you know, proper protocols when the doctor said, Okay, we’re going to try, you know, made sure everything was good to go. And then I stopped taking the birth control. And then after three months I was pregnant.

P: Good that is pretty good. 

C: Yep. 

P: And then, what was the way you want to walk us through pregnancy is there anything that kind of stands out as, oh, I wasn’t didn’t expect this, or this is not what I would be. 

C: I didn’t expect to get pregnant so quickly. Yeah, so that was kind of a shock when I I just on a whim took the pregnancy test I wasn’t like oh my god I’m a weak lead and you know like I wasn’t kind of that. I’m not an overly excited person just naturally. 

P: Yeah, 

C: so I just took it on a whim and I was like well I think I’m supposed to start today I’ll just take it right, and then then the pregnant and I was on my way to the gym. And I was like, Oh, I just left it. My husband was still sleeping. It was early, and I just left it in the bathroom. And he was still sleeping and I was like let’s just see like if I get a call right so I went to the gym I was being a friend you know I still went to the gym and did my thing, and never got a call never nothing I called him and I was like, Hey, did you notice something in the bathroom and he was like, What, no, and I was like, Oh my gosh. Can you go look in the bathroom and he was like, Oh my God, he’s like, go buy another one make sure this is right. Okay, so I went and bought another test and I was pregnant.

P: that is sort of that, that is the tricky thing about getting pregnant quickly is there’s no Runway Right, 

C: yeah, 

P: for people who, it takes a little while he get used to the idea and I mean you have nine months he’s the idea but it is kind of immediate right,

C: yes. Yeah, and you’re just like, wow, my life has now changed. 

P: Yeah, 

C: this is weird, you know, but yeah, and then it was like the anticipation of like, Am I gonna get sick, am I gonna get sick, you know, like I just kept waiting to get sick and I never did.

P: Oh, that’s interesting. 

C: Yeah, 

P: and so was it the second trimester also easy everything’s easy.

C: Yeah, everything was super easy. The only thing I’m about Super stood out was, because I am I was waiting to get sick because my sister had gotten really bad morning sickness. So, I was still working full time, you know I was a manager at a sporting goods store at the time, and I was just working and working you know and I remember this one day I did go out to get lunch and I ordered a iced tea, which I normally do. And it did not sit that I had to immediately go, you know, let it all out. And since that day I have not been able to touch it, 

P: oh, no

C: yeah, so that’s kind of that weird thing of like wow, I totally like him and smell it. Yeah, wow, you know, yeah, it was it’s so that’s like the thing that I didn’t really. The surprising thing that came out of it was Yeah, well I can’t drink iced tea anymore. Cool,

P: yeah that’s that is like a surprising thing after drinking it all the time, right,

C: right, and then just that one time and it was like right at the very tail end of my first trimester, and that was the one time that I ever got sick and it was because of the iced tea, and I was just like that is so bizarre.

P: Yeah, that’s weird. And so, it’s smooth, up until the third trimester and then take us to the day of the birth like how did you know today was the day.

 

C: Yeah, so my water broke at work. 

P: Oh, Wow. 

C: Yeah, yeah. 

P: was it like a Hollywood splash?

C: No

P:  Okay good. 

C: No, thankfully, yeah, thankfully it was not like that, I yeah I had an early shift that day and I was the only manager on the floor. At the time, you know until we opened, there was just like one manager, looking over, like the truck. 

P: Yeah 

C: and so I was there early, and I was just like, kept kind of leaking. And I was like, what is happening you know because it would just like dribble and I’m like pee, like what’s happening so I kept like running back to the bathroom and I’m like, It’s not pee. And then I would stand up and stuff would dribble and I’m like, This just seems really weird. 

P: Yeah, 

C: So, so I went up and I told one of the team leads and I was like, Yeah, can you call like the other manager like I needed to come in early, I think my water broke and everyone of course freaked out. And I was like, No, it’s totally fine. Like, I can wait until she gets here, you know like I was super nonchalant about the whole thing. You know so she got there and then I was able to leave and I drove myself to the hospital, you know, I called 

P: so no contractions at this point, 

C: no nothing. 

P: Okay, yeah, 

C: just some leakage and yeah so I called my husband and he drove like 45 minutes to work was like hey have you left yet and he’s like No, and I was like yeah you might not want to I’m headed to the hospital, you know, Can you meet me there. And so we did and you know they did the test of, I guess there’s like a paper strip that they can stick down there to see if it is actual breaking. Yeah, or nothing.

P: So if your water breaks the way Cheney’s did without much fanfare and there are no contractions, there are a few tests available in the hospital to determine if it’s amniotic fluid. Some use a paper strip to test the pH of the fluid because amniotic fluid is more alkaline than normal vaginal fluid which is more acidic, and there are newer tests to try to measure the presence of certain protein markers that are highly concentrated in amniotic fluid to verify that the liquid leaking down your leg is, in fact, evidence of your water breaking.

C: and it was, my water broke, so but it was just like yeah just a super slow trickle and I was like, I was like okay, no, no contractions, no nothing. This was like it probably eight in the morning I think I got to the eight or nine in the morning I got to the hospital. 

P: And are you like 40 weeks are you close to your due date, 

C: I’m 38 weeks, okay 38 weeks. 

P: Yeah, yeah, 

C: so a little early, I mean, around. It wasn’t until I really started, they did they induce, no I don’t think we did, but it wasn’t until my, you know contractions started getting stronger, that’s when, kind of, I was just like, oh my god what am I getting myself into, you know, that’s kind of when it all hit me was like it’s been so easy. 

P: Yeah, 

C: and no one has really told me about the aftermath, and the actual birth that I was like, wow, like, this hurts. Yeah, yeah.

P: And it is a weird feeling of this is happening to my body and I have no control,

C: Yeah, totally, like zero control. Now I ended up throwing up and I was like why did I just do that, like, what the heck you know and the nurse was like happens a lot, like almost everybody because of the hormones and you know, it’s just like, it’s like came out of nowhere and, you know, I ended up getting the epidural. And it didn’t take all the way. So I felt a lot of everything.

P: So wait did you, you just so you can imagine like I want a natural birth or if you just thought it will

C: I knew going in that I would get the epidural, okay. We didn’t go to Lamaze classes I didn’t, you know, think about doing the, you know, learning how to breathe correctly and all of that in hindsight, I totally wish I would have done all of the breathing techniques and stuff like that, like, you know, because now I’m super into yoga and breathing and it’s like, you know how I feel my body. After some other stuff that happened but, but at the time I wasn’t super into yoga or anything like that. So, so yeah I didn’t, I knew, like I was like yeah I’ll just get an epidural and I’ll be fine. That was kind of my thought going into the birth. 

 

P: good, well good. Like, it’s nice to be on kind of the mainstream path but you won’t be flustered when they offer you an epidural you’ll be like, Sure, I’ll take two, right, like there’s right yeah, yeah. 

C: Can you just make sure it all just works. 

P: So you said it didn’t really work, what was the one side of your body, or

C: basically yeah yeah I felt. I think my left side was actually numb, but my right side I could feel everything. And because it was the first one I guess, everything was obviously still super tight. 

P: Yeah, 

C: down there I hadn’t ever been that large, it doesn’t know what it’s doing. 

P: Yeah, 

C: never need to expand. And it just felt I could feel how tight it was, she was coming through, and that on top of the pressure pain was so unbearable. I just remember like screaming it hurts so bad it hurts so bad you know. 

P: Yeah, 

C: they’re just like push you to make better hurts you know, yeah, yeah, it’s just yeah, it wasn’t good like no one told me oh the epidural might not work all the way. Yeah, yeah, I have another backup plan in case this happens because I can’t redo it, you know like I wish that I would have had that kind of like, make sure that you do understand the breathing that you’re able to calm your body you are able to get through the pit you know like I’ve used other techniques in place. If the epidural doesn’t work

P: well so I’m assuming pretty early on you report to them like I can feel everything and what do they say, so sorry. 

C: Oh yeah, sometimes that happens and I’m like Wow, guys. Thanks. Excellent. 

P: As of 2018, roughly 70% of birthing women get an epidural, according to a study out of Stanford, some fraction of these epidurals don’t work. The most recent article I can find on the subject is from 2004. And those authors report that 12% of the time epidurals fail, they attribute the failure to three things in general. First, labor progresses too quickly, it takes something like 20 minutes for the payments to kick in. Second, the needle is inserted into the wrong space in the back, or third, there are some anatomical issue that compromises the effectiveness of this kind of anesthesia. 

Pain is a really hard experience to describe appropriately.

C: It is because everyone experiences it differently as well. You know some have higher pain tolerance, lower pain tolerance is, you know, I always thought I was on the higher pain tolerance and childbirth is a whole other different ballgame,

P: I was gonna say, maybe you are I’m not sure childbirth yeah but right 

C: yeah exactly. 

P: So did you labor for a long time and was the pushing a long time or how did all that go. 

C: No, I didn’t have to push for a long time, Maybe 30 minute 2030 minutes. 

P: Oh good. 

C: Yeah, so it, it was smooth, though I didn’t have any complications from the time my water broke, and then she was born at 5:50pm. So you know, like, eight, nine hours, like that was it. So no, I can’t say that I had this like long tremendous horrible labor I wasn’t, you know, pushing for five hours or anything like that, you know, you know, it, it was fine. My biggest struggle was the aftermath.

P: So what So tell us about that like so she’s born, and then, yeah, 

C: so she’s born, the umbilical cord is wrapped around her neck twice. 

P: Oh wow. 

C: Yes, so she wasn’t breathing right away. And, you know, they put her in my arms and I like was crying just like, you know, breathe, breathe you know when she finally did and everything was fine, but I ended up tearing, just so painful, which nobody talks about. 

P: Yeah, 

C: or told me about anyway. And so then they had to stitch all that up, the hemorrhoids, the breastfeeding, you know, like, she couldn’t latch on. And it was just it was so frustrating like you have this, now human that you need to keep alive. 

P: Yeah, 

C: and you yourself feel like death, because you’ve been through this like traumatic experience basically. And I was just like my hormones were crazy. It was just it was such like a huge shock that I didn’t expect it to be so hard. You know because I’m, you know see pictures of people with their babies and they’re so happy and I was just like, I was so miserable. 

P: Yeah, yeah it’s babies are really hard right the first month so much work, and you just, I feel like, very few people are prepared for it the first time. Yeah, it is really hard so, but it sounds like you probably did not like imagine I breastfeed for a year and a half or something you just thought you would breastfeed for a while and see how it went.

C: Yeah I mean I wanted to at least breastfeed for a year. That was my plan was to go for the year, and I was determined to breastfeed. So I was like, No, like she’s gonna latch you know she’s been like, maybe I’ll get full 24 hours and she hadn’t eaten because I she wouldn’t latch. And this nurse finally came in and she’s like baby tried this nipple shield, and I was like, what, what is this Why did someone give this to me like the second they saw she wasn’t latching you know, and that was a total game changer. 

P: Oh that’s awesome.

C: Yes. Yeah, so I was able to do the nipple shield and she was able to drink from that and I had to then use that the whole entire time that I was breastfeeding, 

P: wow 

C: I couldn’t get her off of the, the nipple shield. 

P: Well, you know if it works 

C: exactly what they are, don’t fix it, and I had to it took me a while because I was so determined to breastfeed like, you know, do it naturally and to me naturally was beyond breast. Yeah, and having this other foreign object between us, like, to me it was like the but that’s not breastfeeding, you know, so it kind of took me a little bit to let go of that and be like, it’s working and it’s fine you know she’s getting what she needs just leave it alone. But then when I had to go back to work, it actually made the transition from me to bottle so easy because she was basically having the bottle on my boob. 

P: Yeah, yeah, 

C: you know, so then my mother in law was able to feed her when I was at work, and I was able to pump at work and no I mean it all worked out. But yeah, I mean it took like a amount of time for just that one nurse to be like, try this. You know, 

P: yeah, yeah. I mean it’s described as natural which doesn’t mean it’s easy, right, it just means. 

C: Nothing’s easy. 

P: Yeah. It also like every part of this process like even like the birth right to coordinate the cervix opening and the hormones and the, you know everything, occurring at the right time. Doesn’t always work that’s like a tricky thing. So 

C: yeah, 

P: and to have your baby have the right latch to match with you perfectly is awesome. You know there’s no guarantee of that. And so it’s great that you figured out a way to make it work.

C: Yes, yeah, thankful and I’m very thankful for nipple shields and I’m thankful that that nurse introduced me to.

P: So it’s interesting that you, that sounds like a relatively straightforward experience. Although having gone through the birth, you’re willing to say yeah, I’ll do it again. 

C: Yeah, because the pregnancy part of it is so easy that nine, the nine months, you know 38 weeks. So easy, that I was like, Yeah, I can do that again, like the birth is one day. But then I don’t have to care for this thing after I can just heal and be done recover. 

P: Yeah, right. 

C: So for me it was like yeah by, you know, let me heal. Let me recover, let me get back to my life. Let me get back to my daughter, you know, and then it was, it was fine. So in my mind it was, it was kind of an easy yes because the first pregnancy itself was so easy. 

P: That makes sense. Okay so for people who have no experience with surrogacy like, walk us through how it works, how do you find a family or how do they find you and how does that stuff all work out. 

C: Yeah, so there’s a couple of different ways that people can do it.

P: A little background here, so it looks like there are two kinds of surrogacy gestational surrogacy in which the surrogate carries the pregnancy of another woman’s egg, and the father or donor sperm. There’s also traditional surrogacy, which the surrogate egg is used to create the embryo she’s carrying surrogates can be altruistic so they carry the baby for another family, and only their medical bills are paid, or commercial surrogacy, which as the name suggests, involves a fee beyond the medical bills. How common is it. The CDC estimates that between 1999 and 2013 2% of all assisted reproductive technology cycles are for gestational carriers, which amounts to about 13,300 deliveries and 18,000 babies, half of the pregnancies have multiples.

 C: I personally went through a agency where you’re kind of put into this database, like, it’s almost like match, right, so you’re put in this database you like fill out your profile you put pictures of like you and your family what you like what you do you know all these things. And then this other family comes in and views, the profiles, and then they pick what one they think is best. So through this agency we were matched, and then it’s like this whole long process of making sure that I am physically fit and able to go through the IVF treatment. And they also had to test my husband, they had to do some blood tests and things on him, to make sure that he was clean, you know from STDs and things like that, 

P: yeah, 

C: obviously, you know, still gonna be having intercourse with this other person’s day but you know so they had to make sure all that was clear. So it was a lot of blood work, it was a lot of back and forth to the IVF facility that we were using. So, yeah, it was a lot of doctor’s appointments, 

P: and the people who are, who are giving you the embryo, they’re, they’re covering all that, are they going with you to all these things. 

C: No so the couple that we ended up matching with didn’t live in the States. 

P: Oh wow

C: So, I Yeah, we didn’t end up meeting them until I was six months pregnant, I think, wow, that’s when we finally met them like we were emailing, you know, back and forth, we had phone conversations and we would communicate via email, but we didn’t actually meet them until they were able to come to the States. And I was like six months pregnant.

 

P: Wow. So what they just they shipped the sample over to you and then is that is that is that how it worked.

C: So what happened. Well this with my particular instance, the mother, her eggs weren’t viable at all. So they had been trying to do EBF the IVF themselves for a few years 10 years I think. 

P: wow

C: And she just couldn’t get pregnant, and it ended up being her eggs just aren’t viable. So they ended up getting an egg donor and the husband, flew in donated his sperm, and then you know flew home, so the facility was able to do what they needed to do with the egg and the sperm. So all I had to do was just go then to the facility and get implanted

P: and is that painful or it’s easy.

C: No, it’s, it’s not painful at all. It’s a little awkward. So, my couple wanted a girl, they were very like they want, so they did the gender they can figure that out, like, you know what they, what the embryo is. So they ended up having I think three boys and one girl embryo. So they only implanted the one. 

P: Yeah, 

C: with like, you know, oops, that that one would attach because I know they like to do multiple, yeah, yeah, eggs, but we only had one egg that was a girl. So my process into being ready to then be implanted, um, if you’re not familiar with the IVF process is that I’m getting injected with hormones to prepare my body to accept this embryo. So it’s basically tricking myself into thinking that I’m pregnant. 

P: Yeah, 

C: so that my body will accept this embryo, so for the, I think two or three months prior to getting the implantation. I was injecting myself with hormones and taking them orally as well. So then I, you know, so I was ready to go, everything’s good. They measured my cervix. Think beforehand before all this started part of the process was also measuring the cervix so then they knew exactly where to implant the embryo. So they had all this so I’m ready to go, you know, two months later, I’m full of hormones, and I go in and they put you on this table right with your legs up in the air basically like you’re giving birth, and then they tilt you backwards. So my head is at an angle, it’s like a 45 degree angle or my head is down at the bottom and my legs are up. So, I guess gravity helps them 

P: Yeah, 

C: put in this embryo and then I have to lay there in that position for a couple minutes, um, that was, that was the the awkward thing like it didn’t, wasn’t painful or anything at all, it was just super uncomfortable and I was like wow I really don’t want to be hanging upside down. Okay, yeah. But, but yeah other than that it was super easy they implanted real obviously took, and, and then I had to continue doing the hormone replacement for the first trimester. I was doing it before the implantation and then for through the whole first semester was doing.

P: That’s interesting. That’s interesting because your body at this point is pregnant. So why do they need to supplement your hormones, after you’re like I understand the pre pregnancy thing to some degree but once you’re pregnant. Isn’t your body supplying the hormones you need. 

C: Yes, but they wanted to make sure that it was getting the hormones that it needed that the embryo was getting the hormones because there. There was a very high risk of the pregnancy failing within the first trimester, 

P: okay 

C: at the IVF so that’s why they just wanted to make sure that I was getting all the hormones that I needed, so they just kind of upped it.

P: can you feel that made you feel the hormones like Do you feel anything at all.

C: No, I mean I felt, I felt fine before the implant. Yeah, after the implant natural hormones kicked in, plus I was taking the added rounds, and I was sick time. 

P: Oh 

C: nauseous 24 hours, I would get sick, in the evening. Nothing tasted good, like it was bad, I was sick, and I was like I didn’t get sick, the first time but it was because all the added hormones on top of everything. Yeah, so then I ended up getting very sick. The first three months it was great.

P: Yeah, well now you know what your sister was talking about, 

C: I’m sure she’s Yeah no I do it. 

P: And so what’s the rest of the pregnancy like.

C: So after I was able to stop the hormones. Yeah, the added in hormones. It was fine. The pregnancy was great. I didn’t have, you know, after the first trimester, my hormones balanced the baby was doing great. I had a great pregnancy, it was actually during the baby was much better for an easier the second time around. I just remember the first time just being so uncomfortable and I gained a lot of weight. But my daughter didn’t gain a lot of weight she was only five pounds 10 ounces, when my daughter was born, and I have gained like 40 pounds. So, I know I had gained all that weight…where in this instance, I didn’t gain a lot of weight.. I didn’t retain liquids like I did the first time. The baby was getting all of the weight. The second go round so I this I thought that was kind of interesting how my body, almost, I guess it remembers right how what it’s supposed to do so the second time around it was like, Oh, yes, you get all the nutrients you’re good, you know like, We don’t need to hold on to all this extra water in the face and get fat and gross, you know, and it was like just the baby got it and it was fine nice the pregnancy was totally fine, and

P: that’s super interesting and do you feel like, like emotionally it was different for you or you thought it felt the same or

C: emotionally I think I was fine and I knew, you know, we have to obviously sign contracts that I’m not gonna steal the baby and all those Yeah, and that’s funny enough, that’s why a lot of people come to actually California when I was doing the surrogacy I was in California. California surrogacy laws are the strictest laws. So a lot of people come to California, to do the surrogacy because of the laws, which I found kind of interesting. 

P: They’re strict in terms of like their surrogate can’t keep the baby is that the issue. 

C: Yeah, I mean that’s the gist everywhere but I don’t know like the legal obligations, I just remember that each state has specific laws to pregnancy, all of them do state know you can’t keep the baby, but I just knew that California is laws were, there were more laws in place, I guess, to do the surrogacy, 

P: that’s interesting. And yeah, yeah. 

C: And this was like, you know, a few years ago so the laws may changed now, but we’re

not being super that’s why a lot of international couples were coming to California because of the laws that makes sense.

P: It looks like surrogacy laws differ in each state. Many states don’t have any laws at all like Georgia, Hawaii, Idaho and Kansas to name a few. And some states have restrictive laws like Louisiana passed a bill in 2016 that says that gestational surrogacy is restricted to married heterosexual couples using their own egg and sperm, but there are all different kinds of restrictions. For example, Texas says the parents have to be married he’s a surrogate and California as Cheney suggests, is considered a surrogacy friendly state because laws protect both the intended parents and the surrogate, and they’re very good IVF clinics in the state so ostensibly surrogates wouldn’t have to travel far to initiate that part of the process. And if you want to be a surrogate, or use a surrogate, you should look into the laws in your state, as things change frequently. 

And so, when you meet them at six months is that an exciting meeting.

C: Yeah, it was really fun. The mother didn’t speak any English. So, a lot of the communication was through the Father, and there were just the sweetest people, they were so nice so genuine. You know obviously super happy to be becoming parents, and they were just so sweet and yeah it was a really good meeting.

P: That sounds amazing and I could just imagine, you know, from the mother’s perspective how grateful she is to have this, right after like 10 years of not working, this seems amazing.

C: Yeah, she was just she was so, so grateful that you know that it was working and she, she could like see it grow, you know what I mean, like seeing growing we’d send pictures and things like that and I think for her it was just like, this is actually happening, you know, kind of surreal for her and it was just it was such a cool experience to have.

P: So do they get to be at the birth, or how does that work.

C: Yes. So, remember, they were coming to the states around 38 weeks just to make sure that they weren’t close by. Yeah, and yeah so then when I, I ended up having contractions. And, yeah, and then I you know I emailed him and was like hey you know I’m having contractions, you know, I’ll let you know obviously want to head to the hospital. And, you know over I think it’s like two hours or so that contractions started getting closer and closer together. So I was able to get to the hospital and then they met me there. When I got to the hospital was already seven centimeters. 

P: Wow. 

C: Yeah. The second time around I was like, I was prepared, I guess, like it wasn’t super painful like the contractions were intense but I wasn’t in excrutiating pain or an Yeah. So by the time I ended up getting to the hospital I was seven centimeters, and I remember them like checking. And they were like, yeah, like how much longer can you go like pain wise and I was like, Yeah, I’m done, I would like the epidural. Okay yeah, let’s do that right now. Great, so I was able to get the epidural really quickly and my water had never broke, he’s like I can feel the sack it’s like there, it’s protecting the baby’s head right, that’s it. He’s like it hasn’t broke yet. Yeah I was just kind of there, and it’s like weird. Okay, so I was able to

P: did the epidural work this time?

Ca little better than the first. Yeah. Yeah, it took, I could feel the. My body was having a contraction. I a sharp pain running through the back of my right leg. That’s when I knew I was having a contraction. 

P: Wow. 

C: Yeah, but other than that it did. It did work, so I was able to push you know better and more concentrated because I could feel that sharp pain I was like oh I’m having a contraction, and they’re like, how did you know that I was like I have a sharp pain running down my leg. So yeah, the second experience was, was much better, and the parents were in the room with me, so it was just my husband and then the parents and then obviously all the nurses and doctors were in the room, and I pushed her out. And they swept her away in, that was it, and then I got to watch the parents like hovering over her and they cleaned her up and, you know, the dad was holding her and he was crying and I was like that was totally worth it. Like just that, seeing that, you know, 

P: that’s amazing. I want to cry at the thought of that so I just I can’t even believe how generous that is for you to do that. I understand that it’s a job and you’re, you know, there, there are other things that come with it but it just seems like the best thing you can do for another person.

C: It truly is giving life right to someone who tried and yearned for it for so long just giving that to them it was just it made all like the whole process worth it

P: That’s amazing. And so how long ago was that 

C: that was six years ago. 

P: Do we get to hear about their little girl like do you guys keep in touch or 

 

C: they went back to, to where they live in. Yeah, they went back four weeks after the birth, they were able to travel and I pumped for them, for those four weeks. And that is something I will never do again. It was so painful to just strictly pump. Yeah, nipples were raw, and bleeding off the whole four weeks. It was horrible. It was horrible. I was like I’m not getting paid enough, it wasn’t enough extra money to, 

P: yeah, yeah, that sounds hard, 

C: I had agreed to it and then I was like wait, how much is it I was like oh that’s not worth it but I already agreed.

P: Aren’t there milk banks for babies are isn’t, isn’t that a thing.

C: It is a thing, and I realized that after, because I was producing so much milk. I was like well what am I going to do with all this extra so once they leave, you know, I was like do I keep pumping and selling it and or donating it or you know whatever I was like you know what, no, I’m done, like, 

P: yeah, yeah, yeah

C:  I want my boobs back. So, um, so I pumped as much as I possibly could and I would portion it out into bags, the breast milk bags, you know I would portion it out like you know three ounces for ounces however much she was drinking at the time, and you know I told them, you know, because first time parents right I’m like hey just like put it in warm water and let it like slowly warm up and then just add it to the bottle, so I had it all perfectly portioned out for them and then they ended up being able to put, put it in a cooler with dry ice, so they were able to take whatever I had back to their country. 

P: That’s awesome. 

C: Yeah, yeah, they had no I haven’t heard from them or spoken to them since. So, well,

P: I’m sure yeah I’m sure every family has their own way to handle it right.

C: Yeah, and you had the option to either stay in touch or not stay in touch. You know, due to some other circumstances, we, you know, I ended up needing to change my telephone number and email address and all that stuff so the agency doesn’t even have my current, you know, contact information, so even if they were trying to contact me, I wouldn’t even know that, you know Yeah. So, but that was it was a really, really good experience and I have been asked to do it again and I don’t want to.

P: Yeah I mean it’s a lot of strain on your body right it’s like a hard thing, I mean, even though it was relatively easy for you like it is a lot to go through.

 

C: Yeah, physically I was fine. It was the emotional and mental health part of it, so I ended up getting bad postpartum depression with my child. And then, it was never taken care of properly. So when I had the second child, 

P: wait, so let me pause right there, no you’re not taken care of appropriately because you didn’t know what was going on or like what happened there.

C: Yeah, I didn’t know about postpartum depression. I mean I knew that hormones got wacky, and they were fine, but no one in my immediate family or friends group had really bad postpartum depression so I didn’t know what was happening I just chalked it up to, oh it’s hormones because I had a baby, but you know I remember just like hating her so much. No, and I was like why do I feel this way you know I was just like I had so many emotions and I didn’t know what to do with them properly, you know I wasn’t seeing a therapist. You know I think I was ashamed or scared to tell my doctor that I was having these feelings, so they don’t want to do, 

P: they didn’t have you fill out like a little depression form or whatever like a survey,

C:  I’m sure, but I was like yeah normal normal normal. Yeah,

P: so it’s really tricky, you know, I, I’ve talked to a bunch of people who’ve had postpartum depression and it’s the most common side effects of pregnancy.

Which is kind of shocking given that almost everyone says what you have said which is, I had no idea, right i i couldn’t kind of see it in myself and one woman I spoke, it was a therapist, and she was like I you know I still couldn’t see it in myself. So it seems like a really tricky thing to, to fix or address because many people going through it don’t recognize it maybe until the second pregnancy or something changes, or there’s something to compare to 

C: right and I yeah and it was like I just showed me because this was like, you know, a week after I was home with her and I was just like oh my god like trying to figure out, like she wasn’t sleeping and our sleep schedule and, you know, my then husband just sleeps through everything and I was mad at him because you know I’m like I’m the one absolutely you know, feeding her every two hours and you’re just frickin sleeping, you know what I mean so of course there was like anger there and confusion and then the depression on top of that and.

P: Okay, Web MD says, 80% of women experienced baby blues, feeling overwhelmed or exhausted and having mood swings, which makes sense given that introducing a new baby into your lives is a dramatic change in circumstance. It comes with a lack of sleep and hormone swings, but feelings associated with baby blues, usually wane in one to two weeks and peripartum or postpartum depression is a much more intense version of this. According to the Mayo Clinic here are some of the symptoms of this kind of depression. Depressed mood or severe mood swings, excessive crying, difficulty bonding with your baby withdrawing from family and friends, reduced interest and pleasure activities you use to enjoy an intense irritability and anger. I’ll include the full list in the show notes, but it’s important to communicate with your doctor about this to get help. 

C: Yeah, I didn’t really know about postpartum and how bad it could get until after the fact, until after the second pregnancy, and then I got it again. You know, and then I was like, I refuse to get out of bed, you know like with Elise I would get up with her you know like, we would be doing things I would still be doing my normal activities, so maybe that’s why I didn’t think it was so bad because I could still do everything I needed to do. 

P: Yeah, 

C: you know, as a mom as a wife and things like that. But the second time around. I just didn’t want to go to bed. I was just done with life. I just didn’t care, and, and that I think is when it hit me and my husband was like yeah sums up, like, you know, let’s say, going to the doctor. And that’s when we went to the doctor and you know I felt comfortable enough telling him exactly what happened and he’s like yeah, you’ve probably been dealing with depression, and now you’ve had, you know this traumatic experience and your hormones are all out of balance, so that you put me on antidepressants and. 

P: Was that helpful. 

C: No, it made me feel worse. 

P: Oh no, yeah. So, how did you find your way out. 

C: Um, that’s a whole other story. No, I don’t know. Honestly, there. Like I was saying there was a whole lot of other factors to my story than just the pregnancy, my husband, ended up being a drug addict, so I was dealing with that, he told me that he was addicted to pain pills, Three days after I had birthed my birthed our daughter. 

P: Oh wow, 

C: he told me that, so I was dealing with a lot. 

P: Yeah, 

C: and our relationship, and his addiction just kept getting worse and worse and worse and worse as time went on, and I agreed to do the surrogacy I was under the impression that the money was going to be going to pay off our car to pay off credit cards, things like that. Well, he ended up using all the money for his addiction. So there was like a lot going on in my world. 

P: Yeah, 

C: and I ended up because of my depression I think and because of, you know this codependency relationship that I found myself in, you know, I knew I needed help. I knew that he needed help. So I ended up having family take my daughter and I ended up using with him. and the uppers that I was using actually kicked my depression. Not saying that that was the right thing, 

P: yeah yeah yeah yeah, 

C: but because I was so low. 

P: Yeah 

C: the uppers that I was using boosted the, you know, endorphins or whatever. and it actually ended up balancing that out 

P: Good Lord, that is not a straight path through 

C: It was a lot it was a lot, and you know that’s a whole other podcast but, but that’s honestly how I how I got out of it was by doing drugs, and I don’t want anybody to take my how I got out as a way to get out, don’t do it that way, you know, go to the doctor do it the right way, tell them this isn’t working and they’ll put you on something else that will work, but, but yeah, because of all my other circumstances, it just I lead I, I let myself go down that path and help my depression. 

P: All I can say is, Cheney, you seem like an incredibly, incredibly strong person to get through all that each of those separate things, has enough weight that it will take long to get through sort of mix them all together, is, is just seems like way too much, right, like

C:  it was, it was a lot. Yeah, 

P: so that’s amazing to have you on the other side.

C: Yes, yes. Yeah, and you know I wouldn’t be here without the support of my, my family, they they took me in, when, when things got really hard and, you know, kind of showed me their love again and I was able to, to get out of this situation to get away from him, you know, and start building this this new life for just my daughter and I and it’s been pretty amazing. 

P: That sounds awesome. How old is she now. 

C: She is almost nine. 

P: Oh, wow, what she into 

C: dolls. She loves the imaginary play with dolls I think she has 15 right now. 

P: Wow, 

C: yeah it’s getting a little obsessive, but she you know will do her chores and earn her allowance and then she you know buys them herself. But it’s, it’s just so funny and then she watches these YouTube videos of this other little girl who plays with the dolls for YouTube and then she’s now creating her own YouTube channel, playing with her dolls, it’s just it’s really cute to watch.

 

P: That’s super cute my kids were very into dolls too, which is fun like to listen to those conversations right where they’re making sense of the world around them in this relationship they’re creating it’s very cool.

C: Yeah, it’s so funny and new she’s like disciplining them you know and it sounds like me and I’m just like this, you know, or it’s like better I was like oh I wish I would like a thought of, that’s a good idea, like I’m gonna use that on you later, you know. Yeah, insane. Yeah, that’s really good.

P: That’s very cute. So I’m wondering, now we’re down this road and looking back, is there any advice you’d give to your younger self about like the pregnancy stuff.

C: Gosh….ask more questions. Don’t hold back. After the fact, like let the doctor know let people know around you how you’re feeling, you know because you’re not the only person who have felt that way, like it’s an okay feeling to be struggling, and to not shut people out. 

P: Yeah, 

C: well I should have let more people in.

P: I mean, clearly, I think most people do it your way so that seems like a natural response but it is, you know the statistic is like one in seven women experienced postpartum depression you know so it’s really common and, and it’s just a matter of people understanding that like, oh I need help with this and this can, You know where there’s a way to manage it and

C: and not be ashamed of having these thoughts because you know if you have them, then other people have them too.

P: Yeah, and  think of all that your body has gone through right, it makes sense that there’s some expression of that experience. 

C: Yes, yeah. Absolutely. Awesome, well that’s great advice. 

P: Thank you so much for sharing your story is super interesting to learn about surrogacy. And that’s such a amazing thing to do for someone else so it’s like a nice, nice No it’s going on. 

C: Yes, yeah.

P:Great, thanks so much for coming on.

C:Thank you so much for having me. It was fun.

Episode 22 SN: Don’t Tell her No, SMA & Pregnancy: Sarah’s story

If I had to use one word to describe today’s guest i’d say driven, or maybe fierce–truly, and maybe it’s because of these personal attributes that her life in the world doesn’t match the predictions you might make if you looked at her health status on paper. She was born with a neurodegenerative disease that dramatically affected her mobility–she’s never walked and has been wheelchair bound for almost her whole life…and despite the challenges this kind of condition invites, she’s a school psychologist and importantly for this podcast, had a baby. In general, in the medical community, time and time again doctors have told me that pregnancy is an enormous stress test on anyone’s body–to have her condition and successfully manage a pregnancy is next level. And although lots of people enter pregnancy underestimating how it will effect their body, today’s guest had no such luxury. 

You can access Sarah’s class Destination Tomorrow, and her children’s book Differences are Dynamite!

Spinal Muscular Atrophy

https://www.mda.org/disease/spinal-muscular-atrophy/types

https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Spinal-Muscular-Atrophy-Fact-Sheet

https://my.clevelandclinic.org/health/diseases/14505-spinal-muscular-atrophy-sma

https://pubmed.ncbi.nlm.nih.gov/19692244/

CVS Testing

https://www.mayoclinic.org/tests-procedures/chorionic-villus-sampling/about/pac-20393533

Carrier for SMA

https://www.acog.org/womens-health/faqs/carrier-screening-for-spinal-muscular-atrophy#:~:text=About%201%20in%2040%20to,children%20are%20born%20with%20SMA.

Journal article on women with SMA and pregnancy

https://www.jns-journal.com/article/S0022-510X(18)30106-0/fulltext

NIH site about treatments

https://rarediseases.info.nih.gov/diseases/4945/spinal-muscular-atrophy-type-2

Discussion with Dr. Abati about treatments

Audio Transcript

Paulette: Hi, welcome to war stories from the womb. I’m your host Paulette kamenecka. I’m an economist, a writer, and the mother of two kids who very much enter the world on their own terms, as babies often do. But for today’s cast, there was a lot of effort put toward controlling the elements of this process that could be controlled. If I had to use one word to describe today’s guest. I’d say driven early be fierce, truly, and maybe it’s because of these personal attributes that her life in the world doesn’t match the predictions you might make, if you looked at her health status on paper. She was born with a neurodegenerative disease that dramatically affected her mobility. She’s never walked, and has been wheelchair bound for almost her whole life. And despite the challenges this kind of condition invites. She’s a school psychologist, and importantly for this podcast, she also had a baby. In general, in the medical community, time and time again, doctors have told me that pregnancy is an enormous stress test on anyone’s body to have her condition and successfully manage a pregnancy is next level. lol lots of people enter pregnancy under estimating how it will affect their body. Today’s guest had no such luxury after our conversation are back into the interview to add some details about medical issues that we discussed.

Let’s get to her inspiring story.

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

 

Sarah: My name is Sarah Manuel and I am from Northern California. So, like, not like the San Francisco part of Northern California, like the real Northern California where, you know, horses are our neighbors and we grow rice.

P: Nice, that’s really nice. I’m from the fake Northern California– in the Bay Area, but I’ve driven up to where you are and it’s beautiful.

S: Yeah it is. and we love going to San Francisco too

P: That’s that’s having it all, that’s great. Do you want to tell us a little bit about what you do. 

S: Yeah, so I am a school psychologist by day, and on the side I am a life purpose coach, and part of that and I’m really excited to share with people, this course I have called destination tomorrow, which is three different ways to visualize your future so you kind of know what you want your future look like so you know how to get there. And when I made my first vision board that I still have because it’s relevant in so many ways, my life now. There was definitely a picture of a baby on there so I knew as part of the feature that I wanted to create for myself, and I just I didn’t really know how to, how it was going to happen but I knew that I wanted it to happen.

P: Okay that sounds cool. I know you have one child, let’s talk about how you got there, how you made it happen.  Before you got pregnant with that child. What did you imagine pregnancy would be like?

S: So I was born with a genetic disease called spinal muscular atrophy, it’s, it has historically been known as the number one genetic killer of kids under two, and I wasn’t supposed to live past age of four or five, and even though I didn’t have that circumstance. I do live my life in a wheelchair, the disease is progressive so I’m stronger today than I will be five years from now, and I am extremely weak so one pound of weight is heavy.  The fact that I was, you know, still alive when I met my now husband. I just assumed that I wouldn’t be able to have a kid and he’s the one that says, Sure, you can’t Why couldn’t you. So we started talking to doctors, and it was really frustrating because we would have one doctor say, Oh yeah, you can do this and then the next one day I don’t think so. I was really scared about what the pregnancy would be like we really didn’t know how my body was going to respond.

P: Let me stop you for a second, will you tell us a little bit more about your condition, were you diagnosed at birth or later than that,

S: my mom started noticing something was off. I started pulling myself up, and then I stopped. So I was around say six or seven months when she said take me to the doctor. And when the doctor told her, don’t panic, you’re still within the normal limit so we’ll give it some more time than when she took me back and, of course I hadn’t worked at that point, and we started doing a series of tests so I was probably around one or so. When I was diagnosed and they thought I had the more severe, to type one is the most severe and I have type two.

P: Okay, well that’s lucky, have they figured out it was type two?

S: because I lived. 

P: Oh wow. Good lord.

S: Yeah, 

P: well that sounds stressful for you and your parents.

S: Well for me I didn’t know any different, because I was so little I know that the types of medical procedures that I had to go through, were very traumatic and painful. And one that I do remember when I was nine years old, they wanted to do a muscle biopsy to confirm the disease but they didn’t have the blood tests and all that back then, so they can numb the skin to do the biopsy, but they couldn’t numb the muscle when they edit because they said that would be it would throw off the results. So I remember it being in the doctor’s office screaming, and they gave me headphones with Smurf music I think that will hold me down, But I really felt them cut my muscle. 

P: Oh, I’m not sure I’ve heard of Smurfs as anestesia before. 

S: Yeah. 

P: Was it from your leg or where was it from 

S: Yeah, he was in my left thigh. 

P: Oh, wow, that sounds unbelievably painful.

S: Yeah, I get a Cabbage Patch Kidl out of it. So that’s pretty great

P: I remember that being pretty coveted. 

S: Yeah, and I got it before the Christmas rush that that season so I was like that, you know, number one, kids school because I have my cabbage patch kid,

P: yeah, that’s, well done on your parents part,

S:  yes. 

P: So as Sarah suggested spinal muscular atrophy or SMA is a genetic condition that you can inherit, if both parents pass on a copy of a flawed gene. This gene allows for good communication between cells in the brain and spinal cord that affect voluntary muscles with SMA signals from the brain don’t reach the muscles, making muscles weaker over time and limiting a person’s ability to move the genetic test for this condition was developed in 1995, almost 20 years after Sarah was diagnosed, it looks like between 10,000 and 25,000 children and adults have si in the United States in the last five years, new treatments have been developed, the attempt to fix the flaw gene and improve the connection between brain, spinal cord and muscles. 

So, so you’re going around to different doctors and some are saying yes and some are saying no and what are those conversations like like are they yes people convincing or they know people convincing or they’re both convincing. What are they telling you.

S: Well, there was one in particular I remember we had guided an appointment and it was like a ninth wedding anniversary and I thought oh this is a great sign she’s gonna tell us to go for it. So we go to the appointment, and she lays out like seven to 10 reasons why it would be really dangerous for me to get pregnant, and then she just says, I recommend that you don’t get pregnant. And I started to cry. And she said, Did I say something wrong. And I’m just looking at her like 

P: 7 to 9 things wrong 

S:  I came to you wanting to get pregnant and you just told me I can’t, and, like you have no emotion, like, so that was like the one that stood out in my mind and it was after that, maybe even a month or two, one of my colleagues at work, was like, why don’t you get another opinion. And I don’t know why we didn’t think about that before but probably because we have gotten opinions less formal, but we’ve gotten opinions from doctors for years. So by the time that he said that, like, oh, well, I guess we could go see another high risk OB GYN and see, because that was the first high risk OB GYN that we thought I said that.

P: Before you get this next answer to the things that she said resonate with what you knew about your body,

S: Not really because I had always beaten the odds like when somebody tells me I can’t do something. I make it a point to go prove them wrong and say, I can do it. 

P: Yeah, 

S: so it just felt like she didn’t know me. She liked my personality she didn’t know what I was capable of. I was just a name on a piece of paper, and she was looking at the black and white, and not looking at anything else which is what she’s trained to do. 

P: Right. 

S: It felt like that door was closed pretty tight. Yeah, that’s it, that’s why it’s hit me and stayed with me for so long.

P: So one thing I want to capture is that when I’m reading about SMA, it seems like it would be a real challenge to be pregnant, do you have you see your arms.

S: I, when I look at myself, compared to other people with my disease and my severity. I think I’m, I’m on the stronger side, like I’m able to put my own makeup on, I’m able to write, I’m able to type. I’m sometimes my arms get tired and they just don’t really got extremely tired during the pregnancy and especially as my work year because I work as a school psychologist, so I had summers off, I got pregnant in May so I was that first trimester just finishing up the school year and normally I would just like down a bunch of tylenol or ibuprofen to deal with the arm pain I was able to do that course. So, my arms, didn’t work as well as they normally do. But yeah, in terms of my day to day post pregnancy and pre pregnancy I’m unable to move my arms, but I’m still considered technically quadrapalegic, and say I have such limited use of my music I can’t raise my arm. Like I can’t lift up my elbows. So, the strength I have is like for my elbows to my hands. Yeah,

P: yeah, fair. Okay so now you have been convinced to go get another opinion and is there anything to your any method to your search to find another maternal fetal medicine doctor like I don’t know how I would identify someone who might be more open.

S: So the first one was referred to you by my muscular dystrophy specialist. Then we went to, I think just my regular general practitioner and said can you refer to a high risk OB GYN for another opinion. And so, that doctor was like heck yeah you can do this, you could even have natural delivery and yeah you’re capable, I’ve done it before we can do this. So then it was just a matter of having that conversation of, is the risk worth the benefit. When do we just go for it, or do we not, and after we talked about it for like three months we decided, our lives would be so much one in which by trying and knowing one way or the other than to always wonder and have that void.

 

P: Yeah. So two questions. Number one, do you have muscular dystrophy community, do you know other people around you with a similar condition

S: at the time and no. 

P: Okay, so they don’t have examples of like other women who’ve done it.

S: Correct. But it was interesting because when I was pregnant. There was another category of like the USA weekly, you know weekly magazine that comes in the Sunday paper. Yeah, there were a woman with my my disease exactly that was pregnant and telling her story, and I was like this is like six months long or whatever. So we actually got in touch with her and talked to her and got more information

P: wow, That’s amazing. I did find one article from 2018. That’s a review article, and they looked at the medical literature and obviously not everyone with SMA or neuro degenerative disease, who’s been pregnant is captured in the literature, but from 1950 to 2018. It was 67 people.

S: Yeah, 

P: which is not a ton. 

S: That’s why at one point we just had to make a decision, my husband and myself to whether to take the risk or not, because they did medical advice but only get us so far we had to just, you know, make a personal decision and, and, for us the risk was worth that the huge reward on the upside of things had worked 

P: it is a huge leap of faith. 

S: Yes, definitely. 

P: What are the risks?  

S: death 

P: why is it potentially fatal?

S:  They were very concerned about my lungs, and if my body was able to tolerate that component of it, there were risk of blood clots and and that kind of thing. Those are the two biggest issues. 

P: Okay, well pregnancy as many people say is a stress test so I guess that makes sense. I guess I was imagining that it was mostly muscular and not like organ related. 

S: Right, so it’s every muscle in your body right, so an example, my lungs, normally develop but the diaphragm muscles are not because it’s a muscle it’s impacted. 

P: Yeah, 

S: so my breathing capacity is lower than a typical person. 

P: Okay,  I apologize for my sixth grade understanding of anatomy.

S: Oh, No, it’s, it’s good to have the questions. 

P: Okay, so you decided that you’re going to get pregnant super exciting. And how does that go.

 

S: It’s couldn’t have been easier we got an ovulation test, found out when I was ready and got pregnant the first try.

  

P: Oh my God, that’s awesome. That is totally awesome. you know so many people have a tough time getting pregnant and I’m so grateful. In your case that it was not hard at all because you might have attributed it to something else.

 

S: Right, and I in the back of my mind I’m thinking, okay, nine years of marriage, we’ve never had an oops. Is it because I can’t get pregnant. 

P: Right, 

S: so it was a relief when, what do you know, I was capable

P: Super exciting and then are you, I’m assuming they put you straight to high risk, you don’t go with a regular OB.

S: It was interesting because I would go see the high risk to do like the CVS testing to make sure the baby didn’t have my disease.

P: Okay so CVS testing or chorionic villus sampling is a prenatal test, in which they take a little piece of the placenta and test it for a variety of genetic conditions, including SMA cystic fibrosis and Downs in Sarah’s case She’s clearly a carrier for the genetics that create a SMA, and they didn’t know if her husband was, it looks like it’s pretty common to be a carrier between one and 40 and one of the 60 people. This test is usually done between weeks, 11 and 14 before amniocentesis can be done.

S: But like the regular OB GYN managed me the entire time.

P: Oh great, that’s nice so it’s less stressful.

S: Yeah, and he was like cuz we were assuming I would just go straight over there, and he’s like, Oh no, we can do this. 

Okay, great, 

P: that’s awesome. And so what was your pregnancy like were you nauseous in the first trimester.

S: Nope.

P:  Nice.

S: Understand how you know that show they used to have, I didn’t know I was pregnant. To me, like, it’s like how do you not know you’re pregnant and except for the missed periods, I wouldn’t have known, like it was the easiest thing in the world.

P: That’s awesome. I think if anybody should be given that gift, it should be used so I’m glad you got it.

S: Yeah, one of the nurses said well we something’s easy for you. 

P: Yeah, 

S: I saw my muscular dystrophy specialist more often. And I got his attention because these doctors at these teaching universities, once you become someone they can write about their research papers they become very interested in you so that was good that I had his full attention. So yeah, it was, it was pretty easy pretty clear cut.

P: That’s awesome. And so, take us to the day of the birth like how do you know, today’s the day and what happens.

S: Oh well, actually let me back up because there was a time I was maybe six to eight weeks it well first of all, they were just hoping I would get to 32 weeks, because that would be a point where the baby could be born, and the lungs would be pretty okay if there would be a good survival rate, and I was able to work to 35 weeks and I went up to 38 weeks to deliver him full term.

P: Oh, let me ask one question about that. So, when I was pregnant the first time the baby was sitting in a way that made me My husband used to say I sound like Darth Vader, when I was breathing because like the baby was like laying on my lungs, you didn’t feel any of that, that was easy for you.

S: that was easy for me. In fact my lungs got stronger as the pregnancy went on because they did lots of pulmonary function tests on me, and they kept improving the further into the pregnancy I got, like, Wait, this is the opposite of what was supposed to happen. 

P: That’s totally interesting. 

S: Yeah, it was amazing. There was one night I remember where he turned, he actually turned himself from being head down to going side to side. And at the time I thought maybe I was going into labor you know going into labor or something. And it turned out to be such a blessing because he was just running around because I’m not a big person, so he turned. So he sat sideways in me and it gave us, you know, an extra month in there. It was very painful, when he did that but  is allowed for more room for both of us. So he was very compliant… like even when I would have to go to the bathroom, you can just see his little butt stick out so he wasn’t on my bladder. He’s a very good boy,

P: I like that, it starts from the very beginning, 

S: yes. 

P: That’s awesome. What do you have to do for gestational diabetes I know you have to do the little prick test all the time.

S: Yeah, I was able to manage mine with just what I was eating I didn’t have to take insulin and everything, but I did have to do the blood tests every time I ate, and that kind of thing.

P: I feel like I was partially on that train and so I remember doing all the blood prick the finger prick stuff. 

S: Yeah, 

P: so that’s kind of a pain but it sounds like it resolved once you delivered me 

S: Yeah, it was fine. 

P: So now take us to delivery day you’re at 38 weeks. And are they are you scheduled a C section or you’re going to have a vaginal birth.

S: Well we had kept asking questions and talking about the different options, and there was one point when they said, if you have an actual delivery, an epidural isn’t possible because I have scoliosis, which is the curvature of the spine. So when I was 10 they put in metal rods to straighten that and they fused it with bone from my hip so it’s like glued there. So in order to get an epidural, they would have to drill through that it’s like okay that’s not happening. 

P: Oh good lord, no thanks. 

S: Yeah, yeah. So if I were, it was either, it would either be natural with no epidural or a C section, and what finally made the decision was they told me if something happened, Your our primary concern and not the baby. And it’s very hard for them to intubate me, so that it would take them a long time to do that. So it’s like okay well then that’s just not an option, we’ll do a scheduled C section.

P: Yeah, that makes sense right have as much control over it as you can.

S:  Right. 

P: Do you have any contractions at all before you go in.

S: Nope

P:  Yeah, that’s I had the exact same experience, no contract felt like a business meeting, because like I show up at the hospital and you don’t feel anything and you just like wheeled to your room. Yeah. So what was the C section like,

S: Well, it was in a general surgery, operating room, because they were going to have to put me under anesthesia. But in order to do that, like I said, it takes them a while to intubate me, so I had to be awake while they intubated me, and I couldn’t take any sedatives or anything because it would have affected the baby. So, I am literally wide awake while they are sticking this tube down my throat.

 

P: That does not sound comfortable are you are you freaked out or how are you handling it.

S: It was an amazing anesthesiologist, he was fantastic, and he talked to me the entire time he went at my pace. They were not interested in rushing things. So, that which is better than because I’ve been intubated while sedated and that was horrible because I would come to and feel like I couldn’t breathe and all that, they would tell me if you’re fine, and it was horrible. So, being awake and having them actually care and talk to me and listen to me was a much favorable experience than the other.

P: Yeah, I mean a good doctor goes a long way. Right, they can definitely take you through some really hard things so I’m also grateful that you had a good anesthesiologist because that’s super valuable in that context. So, once they get the tube can they then like knock you out.

S: Yes, so as soon as they got the tube in. They put me under he was under anesthesia for no more than, you know, four or five minutes right before they let him out.

P: Yeah, the C sections really fast. Right, 

S: yeah, yeah. And it was actually the doctor who prefers the C section was the one who told me not to get pregnant and why are you crying, and I made a point I said, I don’t want her to be the one. And I told them why and she happened to be the one on the calendar that day they didn’t have any control over it. So when she came back in to check on me after delivery, you know, it felt kind of like told yourself. 

P: She didn’t say anything. 

S: Not that I remember now if it stands out. So, if she did a great job sewing me up and everything because you can’t even see it. So, that’s amazing. Yeah, and somebody told me, Well, maybe it did her good to see how she said not to do it and it turned out better than okay

 

P: yeah yeah I agree. I mean it’s a learning, learning opportunity for her, and in my movie version of your story. She’s apologizing at your bedside, while you’re holding your baby. Just so you know, that’s when I when I write the movie. Yes. So, does it take a while to come out of the anesthesia after those whose section.

S: I don’t really know how much time went by, I remember what you know how they have to do the massaging of the uterus when you have a C section. 

P: Yeah, 

S: that was killing me, and they’re just like, I don’t understand why and then I realized later, I didn’t have an epidural. Usually these women aren’t feeling this…it was torture. And, but yeah and I remember before I had the baby I told me how it’s been, Joe come see me just stay with the baby. Don’t worry about me. And then in my recovery, I guess I totally flipped and like I want to say my husband. So he was like are you sure cuz she told me to stay with the baby.

P: It is, you know, you never know what you’re gonna feel like in that circumstance, yeah beforehand right so, so that makes sense. And then, and I’m assuming your son was fine, aced his APGAR.

S: Yeah he was, I don’t know what his APGAR was he was in NICU for four or five hours. And the other interesting thing is my husband did not get to be part of the delivery, because it was a surgery. Wait, and they said, you know you we would usually like the husband’s end to be moral support for the wives but you’re not going to be awake so he will not be there, so that was kind of a bummer for him, but he went and spent, you know they came and got him immediately, and they went to NICU together.

P: That’s awesome, did why did your son go to the NICU was because of the general anesthesia.

S: Yeah. Yeah, they just wanted to watch him, and he was only in there for a couple hours before they moved him to the maternity ward without me.

P: That’s like a drive by, that’s nice. 

S; Yes. 

P: And then what was that what was your recovery like in the hospital.

S: So they insisted that I go to ICU that night, just to be extra cautious, and at first they won’t even let me see the baby, and my husband’s like, No, you need to get her up here so she can see her son, so I got like five minutes in the hallway with our son before they took me to ICU. 

P: That’s real hard right…that’s a hard thing to be separate in the beginning, 

S: very hard.  And I remember like I was wide awake in the middle of the night, they tried to bring in some pumps to help me get that going. But I didn’t have my baby, which that’s all I want it was my baby,

P:  yeah, yeah, yeah…And so, how long were you in it, I see I’m assuming they just don’t want babies in the ICU.

S: I guess and I don’t remember them saying why they just put him in with my husband in a maternity room on the, on the ward. So and it was a private room because we got lucky with that. Um, and my husband like looking back, he’s like, I was kind of happy to have that time because you got him this whole nine months. I got him.

P: That is kind of nice for your husband. Yeah, I interviewed someone else who was in the ICU after her birth and she said they had a rule that there were no babies in the ICU because they’re worried about germ exchange between people in the ICU and a new baby and 

S: that makes sense. Yeah. 

P: So, I’ve definitely heard that that part before. And so, like, did the pumping work, how does that how does that go,

S: it didn’t go very well. It just, I tried once or twice but it didn’t work

P: And did you have any notions of like I definitely want to breastfeed or were you

S: Yeah, I was set to where this was going to happen. And we, I tried many times, it just didn’t, and I just finally said okay, this isn’t what’s important. You know, I let go of it, because it was better because my husband was going to be the one to get up in the middle of the night to feed. So it was,it was better. 

P: that makes sense. Yeah. And did you have any like notions of like I definitely want to breastfeed or were you 

S: Oh yeah, I was set to where this was going to happen. And we, I tried many times, it just didn’t, and I just finally said okay, this isn’t what’s important.

P: That’s amazing perspective because I’ve definitely I’ve seen my friends struggle with it, but there is like a lot of pressure to breastfeed just everywhere. So it’s a little bit tricky to to carve your own path in the beginning, so that’s hard so kudos to you for being able to give it up in a, in a way that makes sense for your family. 

S: Yeah, 

P: all those formulas have DAPA now and all the, you know, stuff that breast milk has and certainly it’s not exactly the same but it seems a much better substitute than maybe like our parents. 

S: right I would agree. 

P: And so, what was your recovery like when you got home,

S: I was pretty weak at first, but you know within a week or two I was fine like I remember he was born December 9 And my mom worked at the school I grew up in, so they had a Christmas program, like maybe a week later, and I remember we took him there so he could see Santa. 

P: Wow, 

S: yeah so we can have our first picture with him the Santa, because I didn’t want to take him to the mall yet. 

P: Yeah, 

S: and I would be kids good I worked with the school here as a school psychologist so all the kids wanted this you know they saw me pregnant so they were thrilled to see the baby and so that was fun. But yeah, 

P: awesome. 

S: I’ve been around and doing stuff. 

P: How big was he when he was born, I neglected to ask

S: he was five pounds five ounces. 

P: So that’s a good size. 

S: Yeah, 18 inches tall, and he had the biggest feet it’s like his feet were the only things that had room to grow. 

P; That’s very funny. 

S: Yes. 

P: And how old is he now. 

S: He is 10 

P: Wow, awesome. So what’s the into 

S: He loves cars like Hot Wheels car video games Minecraft, your typical boy step Roblox that kind of thing.

P: That’s super cute both of my kids were addicted to Minecraft, at some point.

S:  Yes, I think that’s a right of passage

P: no kidding. That’s very fun. So, what an amazing and triumphant journey you have had here. I’m so glad to hear it and I hope that you are, you know, shouting from the rooftops so everyone who follows behind you knows like yes this is possible or get a second opinion.

S: Yeah, and since then I’ve met up on Facebook with other women with my disease who have also had babies. So, if that had been the case, I wouldn’t have felt so alone so like we’re no charting new territory so that I think is helpful too.

P: That’s amazing. So, I am interested to hear if you could go back and give advice to your younger self, what do you think you’d tell her.

S: Just don’t stop believing it. And it was interesting because as soon as I got pregnant, I had this sense of peace come over me that the baby was going to be fine. So I wasn’t really stressed out, there wasn’t really a point where I said oh I wish I wouldn’t have done this, I just was very calm and like excited and like I knew everything was going to be okay. So, I think I would go back and tell her, everything’s gonna be okay, right, you can do this, and you’re going to be fine. 

P: So why don’t we talk a little bit about your book 

S: in the spring, I put out a children’s book, I have actually written in grad school, so it’s been, you know, just kind of sitting around for 13 years and I find the guy the illustrated consequences are tiny. And it’s about some animal friends who, instead of being embarrassed or ashamed that the ways that they’re different. they’re different in all different ways, they, they look for the differences and other people and they encourage it and celebrate it, so that they are, you know, proud of who they are as individual and that, you know, together we’re stronger with our differences and trying to be just like everyone else.

P: That sounds super cool, and you’ll send me a link and I’ll people will be able to find it. 

S: Yeah, absolutely. 

P: Okay, awesome. That’s awesome, that’s so that’s such a great story. I totally appreciate you sharing it with us. Thanks so much for coming on the show. 

S: Thank you so much for having me. 

P: One thing I didn’t understand before I became a mother is that becoming apparent requires a lot of toughness, both physical and mental and serious toughness have been tested her whole life. She seems wildly overqualified for this job . Her story is also a good example of what it’s like to live on the edge of medical understanding. As she said she and her husband just had to make a decision to have the baby at some point, because her experience is unique enough that their decision, couldn’t be guided by medical expertise. Thanks again to Sarah for sharing her amazing story. I’ll put a link in the show notes for Sarah’s class destination tomorrow, and her book differences are dynamite. Hope you enjoyed this episode, feel free to like and subscribe and leave a review if you can. It helps other people find the show. Thanks for listening. We’ll be back soon with another story of overcoming.