Episode 73: A Birth Visited by Too Many Medical Interventions: Nicole’s Story, Part I
Episode 73SN: A Birth Visited by Too Many Medical Interventions: Nicole’s story, Part I
Today’s guest walked into pregnancy with an expectation that the process would be as smooth for her as it had been for her mother, as it was for the farm animals she’d been surrounded by for her whole life, as it was from 50,000 feet: civilization depends on this process and women’s bodies were made for this project. Although the pregnancy part was relatively straightforward, the ways in which her first birth unfolded deviated profoundly from her expectation. In this first part of our conversation we’ll hear how she processed that first experience, and how she used what she learned in this experience to alter the births that followed.
Relationship between Pain Medication & Fever
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7976662/
https://www.karger.com/Article/FullText/504805
Audio Transcript
Paulette: Hi Welcome to War Stories from the Womb. I’m your host Paulette Kamenecka. I’m a writer and an economist and the mother of two girls
Today’s guest walked into pregnancy with an expectation that the process would be as smooth for her as it had been for her mother, as it was for the farm animals she’d been surrounded by for her whole life, as it was from 50,000 feet: civilization depends on this process and women’s bodies were made for this project. Although the pregnancy part was relatively straightforward, the ways in which her first birth unfolded deviated profoundly from her expectation. In this first part of our conversation we’ll hear how she processed that first experience, and how she used what she learned in this experience to alter the births that followed.
Let’s get to her inspiring story
P: Hi, thanks so much for coming on the show. Can you tell us your name and where you’re from?
Nicole: Sure. My name is Nicole. I hail from the Midwest, Indiana. I’m halfway between Chicago and Indianapolis.
P: Okay, so let’s talk pregnancy. You have three kids?
N: Three. Yep, that’s right.
P: And what’s the one of the ages?
N: three alive? I’ve three alive. Yep. So my kids are 420
P: Wow, nice. That’s well spaced. Well done.
N: I couldn’t have done it better if I planned it.
P: Yeah. Yeah, totally. I agree. So before you got pregnant, what did you think pregnancy would be like? What were you imagining?
N: Uh, well, uh, so it all kind of happened kind of fast for me. My husband and I have been married now I think for seven years but we have been together for about 20 years.
And yeah, you know, when we were kids, we knew we knew we were gonna have kids, when we were kids, and that was something we always talked about when we grow up when we get married when we have kids. So we always had this, like far off distant idea. of in the future we will have children, but being unmarried teenagers, you know, we’re like avoiding that like the plague.
P: yeah
N: We don’t want to be pregnant. We don’t you know, we don’t want that. You all have that. So we got married, and month and a half later, we were pregnant. It wasn’t quite the honeymoon baby. But we didn’t plan that we weren’t trying it wasn’t intended was not intended, but we were very surprised by it. And so my experience with it was going practically my whole life avoiding pregnancy.
P: Yeah,
N: to now being pregnant and it being socially acceptable, where like, so I didn’t have that time for my mind to shift from avoiding it to desiring it. So that was what what really struck me about my first pregnancy easy Yeah, that emotional trip into dealing with what what was happening?
P: Well, good to good you know, struggle with the front end. Did you find out with like a home kid or how did you how did you find out you’re pregnant?
N: I had an inkling who and I took a test and it was positive. And I, at that time, didn’t think you know, anything could happen. If the home pregnancy test says it’s positive than it’s positive and we just went with it. You know, we, you know, immediately called the doctor because that’s what you do when you’re pregnant, right? You go to the doctor, so we call the doctor we make the appointment we waited the traditional three months to tell everybody you know, in case something bad happened. We did all of those things like the way the cultural norm is so we went we went through all of that and that was all I mean, it’s still like deer in the headlights. You know, I just went from avoiding this to now everybody’s excited about it.
P: That’s kind of amazing. I wonder where the three month rule. I feel like my doctor told me that although I did not follow it at all and had a miscarriage and just had to tell everyone but I think it’s I think it’s from I think my doctor said you might want to wait, but I can’t remember where it comes from. Anyway,
N: I think that’s an old rule when I don’t know when doctors first started playing a big important role in pregnancy and they just advised you know, you want to save face. If you do have a miscarriage. You don’t want to have to go around telling everybody your business that you had a miscarriage and, you know, we thought we thought that that must be important. So that’s what we did.
P: Yeah, yeah. So it was the first trimester easy.
N: The whole pregnancy was pretty easy. Really. I didn’t have a lot of morning sickness. I craved pickles. I was working in a factory at the time. I was on my feet a lot time and that was the big joke like crazy pregnant lady drinking pickle juice. And I did I am but I had heartburn in my third trimester and that was really the hardest thing. You know, everybody has the discomfort and the tiredness and that part of it. But looking back on it, it was pretty easy. I know though that there were days when I was like, Oh my gosh, I can’t do this anymore. Like in the moment you deal with that, but But when it’s not extreme, and there’s not medical conditions and things like that, you just say Oh, this must be what everybody does. This is
P: we just sort of accept it because it’s because how else is it gonna go right? That’s what you’re told. Yeah. So take us to the day of the birth. How do we know today’s today? And then let’s walk slowly through that day.
N: Yeah, sure. So. So looking back on everything that happened where my expectations didn’t really match up to what was happening was like with the birth part of it, and, and that was where, like, the experience just hit me like a Mack truck. So I grew up on a farm. You know, I assumed pigs and cows and horses. You know everything goats, sheep, I’ve seen everything be born. I know like, I knew when I was a kid like population how that happens. So I’ve always known this and I’ve been around forever. And when I got pregnant, my mom’s advice to me was, you know how this works. Don’t read the literature that they give you. It will scare you to death. You know how birth works. You’ve seen it done. Trust your body and it will happen. And my mom, in my mind was a warrior. She had four kids and the first three were born in a hospital completely naturally. The fourth one was a C section. You know, and there’s, you know, the story around you know, how the baby wouldn’t come down to the birth canal and that’s just how it was and whatever. But, you know, I had this wonderful example in my life of how birth was supposed to work. So I thought, okay, I don’t need to read anything. I don’t need to prepare my body knows what to do. I’ve seen it done. It’s going to happen. So I didn’t read anything, not What to Expect When You’re Expecting I didn’t watch videos. I didn’t blogs, nothing.
And my husband says he knew that I was going to go into labor because I came home and I was like, our yard is a mess. I hate it. We’re going to clean it. All up like the baby is coming. I don’t want to have to come home and deal with a messy yard. We’re going to mow it and we’re going to weed it and we’re going to pull all the shrubs out of the flower bed. And you know, I just had all this energy and he said, you know, he reminds me of sitting on the couch after doing all of that work. I was just sitting there saying, I don’t know why everybody says pregnancy is so tiring. And I don’t know why the third trimester is supposed to be so bad because I just have all this energy and I feel so great. He’s like, uh huh, he knew what was coming.
So that night after doing all of this yard work and just feeling so amazing. I got up to go pee at midnight. And as I was sitting on the toilet, I heard like an audible pop.
P: Oh wow
N: That is a gush of water. You know like the things that doesn’t happen to everybody but that’s what it was. And it was read amniotic fluid and I like immediately just began shaking with fear like head to toe overcome with fear, like my whole body to the core was shaking. So I had to wait for this session to stop I had to go wake my husband up in the middle of the night. I have to say you know it’s time we have to no it didn’t take long once he heard me say it’s time like he was immediately awake and alert and up and out of bed and I had a bag packed and you know I am prepared that much at least we did not have a car seat. It was not in our car, but we’re like that’s the least of our worries. We’ll figure it out later. So we grab our bag and we go to the hospital and I didn’t think you know amniotic fluid was gonna leak I had no idea so I just put on jeans and you know I’m still leaking in the car. we didn’t have a trash bag. I made a mess of the car. I walked into the emergency room entrance of the hospital just like water still pouring down my legs and my husband got me a wheelchair and the people are like looking at me like what are you doing here? And I’m like, my water broke and they were like, oh, and then it became an emergency to get me checked in a wheelchair and to the labor and delivery. And so, all of this time though I’m still shaking with fear. We get to labor and delivery and we have this whole big rig mo row. Are you really in labor? Are you feeling contractions? Is this really your water breaking? And, you know, then the they had to do an amniotic test where they had to like swab me to determine that the fluid that was coming out really buzzed amniotic fluid. When it came back positive then they decided that I must really be in labor and I will be allowed to stay because they were so busy that night.
P: That is like a little circus environment there. Although I think most people don’t experience the kind of dramatic and obvious water breaking that you did. So So I think some people are really unsure themselves like oh my Warbreaker broke or not although it seems like yours is pretty clear.
N: absolutely it was
P: And so at this point you’re not feeling contractions are you are
N: i i probably had some pain in my back but I wasn’t feeling like miserable countable contractions I just my water had broken, but I’m also still shivering with fear. And, you know, in the birth that I’ve had since then, when looking back at that situation, I know that that fear response in my body was stopping any contractions that would have happened with that. So like this fear, this flight response that I was having definitely shut down. Anything that was happening.
P: Yeah, there’s a lot of chemistry involved in that in that response. Right. So you can imagine it is telling your body like not now.
N: Oh, well yeah, I mean, an animal’s in labor and there’s an ear Okay. Body says don’t be born because you’ll be taking your days and that’s, that’s what my body was going through. Because even though I like mentally knew that my body was capable of giving birth, I didn’t believe in my body like in my subconscious mind, you know, like, my body was fat and ugly. I hated it. I was constantly putting it on diets and berating it and saying, you know, I hate you all of these cultural stories that we have about women’s bodies. And and that was what was putting me into this fear like this mental juxtaposition of I know I can do this as opposed to the true like deep down beliefs that I have that my body was a piece of garbage like a piece of garbage can’t do something amazing. And and that’s that what, what, threw my first birth off the rails for sure.
P: Yeah, that sounds like a really hard thing to work through in the moment. And did you have
N: I was not aware of it in the moment. took several years afterwards to come to that.
P: Well, you probably knew you were fearful. Right?
N: Yeah, I definitely knew I was afraid and that but you know, I just thought, you know, my, I’m afraid but my body’s gonna do it. And when it happens, I’ll just go along with it. Yeah, okay.
P: And so, since you’re waiting for and stopping contractions at the same time, how does that progress?
N: Yeah, it doesn’t.
It doesn’t progress at all. So after it was about six hours, they have me hooked up to machines and they were measuring my contractions and I was kind of sleeping off and on but I wasn’t feeling the pain and I felt poorly, but I wasn’t feeling regular measurable contractions. So they
Come in and they hook up an idea that kind of, I think it was they started hanging Pitocin at that time. And looking back on it. I see you know, the audacity that they had to come in and talk to my husband about this. They didn’t talk to me about any of it. I didn’t give my consent. Obviously, I wasn’t going to disagree with them at that time. But it was not me giving consent.
P: why aren’t they talking to you?
N: I was tired. I was sleepy and he was awake. So rather than, you know, trying to rouse me and have a conversation with me, they just went right to my husband and talked with him. Because like yep, if that’s what we need to do, then that’s what we need to do. And over the next six hours, they have three bags of Pitocin
P; oh Wow.
N: Which was causing back labor. So by noon, 12 hours after I had been admitted. To the hospital by noon, I was ready for pain medication.
P: Yeah, no kidding
N: They hung up a pain medication. And still they were measuring contractions and saying you know, we see you’re having contractions, you’re in labor. They were checking my dilation constantly which you know, that’s a whole another story of invasion of self being uncomfortable and just adding to those to those hormones that are slowing down labor. But so yeah, by noon then 12 hours later, I was on Pitocin and pain meds
P: man, this is this is hard.
N: So what not what I expected when I went to the hospital, that’s for sure.
P: Did you think it would be fast like what what was the image in your mind? Yeah,
N: so So in my mind, I thought you know, this is gonna be quick and easy. I’m just gonna lay there and my body will take over and do what it’s supposed to do. And eventually a baby will pop out. And I will have this baby in my arms. And that’s, that’s all the thought. That’s all the space. I allowed this event to have in my mind.
P: Yeah, that makes sense. I think people are fuzzy in describing birth, right? They kind of walk fast by that part. And I think it’s hard to find the right vocabulary to make you viscerally appreciate the pain
N: for the first two births. For me that was true by my third birth that wasn’t so true anymore.
P:Interesting. Well, I’m interested to hear how we get there.
N: Yeah.
P: So how do we progress like how do we
N: Yeah, so noon, they start giving me pain medication and then from noon to six, my temperature starts to increase which they attributed to possible infection because my water has broke and that’s the risk of having your why you have to go to the hospital when your water breaks, is because of that risk of infection.
They don’t talk about how the pain medication that they were hanging, for me causes your body temperature to rise.
P: Okay, so Nicole mentions of the pain medications in labor may have caused her fever. So this turns out is not entirely straightforward. Like many things about birth. There are some studies that suggest that an epidural can be associated with a non infectious rise in temperature, but there are many other factors that can contribute to fever, including things like a long duration of labor, and a long time separating ruptured membranes from delivery. I put some links in the show notes on this topic. If you’re interested in the details.
N: so my temperature is rising possible infections still not feeling contractions, six o’clock comes and the on call doctor for the evening comes on to the ward and there’s lots of other women in birth the whole word of school they have women in other rooms of the hospital who are in labor, but can’t come into this labor and delivery and it’s a pretty small rural hospital, really, it was a private kind of thing. It wasn’t part of a huge network. So it’s not a huge fancy place. So the hospital is dealing with their own constraints besides me. Taking up this room, progressing really slowly. Around 6pm They say you know your fever is starting to go up. We need to start doing fetal heart monitoring to make sure that the baby is safe while your body temperature is increasing. You know, we went to to walk we want you to do things to try and move things along. Because if you don’t, and that’s what they started telling me around six o’clock that evening, so 18 hours after I got to the hospital. If you don’t, then we will do a C section. So that kind of also starts weighing on my mind like oh my god, am I not capable of giving birth? Am I going to have to have a C section?
So you know, I’ve got all of that going on. I do the walking they give me more pain meds, they increase I think probably the day to start working on the contractions and around nine o’clock. I went ahead and took the epidural, the first epidural
P: Oh wow,
N: labor doesn’t progress. nothing’s really happening. Around 11 o’clock. They come in and say you’re going to push I think they weren’t declaring me to be around nine centimeters dilated, but by the measurements of the contractions I was having something should have been happening. They criticize the way I’m pushing and say you’re not doing it right. This is how you do it and 11 o’clock goes by and they keep making me push and I’m pushing according to readings on a machine. Not according to my body. Like I’m so out of my mind. I don’t really even know what’s going on. Like I’m I’m desperately afraid of what’s happening right now. And it came to like 1130 and the nurse went and got the doctor and said, You know she’s pushed, nothing’s happening. They decided your body temperature is too high. At 1130. They decided you’re going to have a C section so they started prepping that they started checking my epidural. I could feel where they were poking and all the tests that they were doing so I had another epidural and the anesthesiologist that came in and did it. He had to come in from home wherever he was at to do it. And he just said I’m going to give you two to make sure that you get through the next however long it’s going to take you because again the hospital has a lot of other constraints they were dealing with. He wanted to make sure he didn’t have to do it again right before they did the operation.
It was between 1130 and 1145 or so they do the extra epidurals they have my husband and they put him in you know the full HEPA suit with his beard cover and all of that and
P: wait How are you feeling? Are you are you upset or where are you?
N: I’m drugged out of my mind at this point. I’m still shivering with fear but I just like so out of my body that I I’m I’m not capable of giving consent. I’m not capable of not giving consent.
P: Yeah,
N: I’m just I’m just going along with it. I’m desperately afraid of what’s happening. I’m in fear. I’m disappointed because, you know, I never thought that I would need the epidural. I never thought I would need the pain meds and I’ve taken all of that and now they’re telling me that my baby is in danger. Heart rate might be low that my body temperature is increasing, who’s going to be born with an infection? Just fear.
P: Okay, so this is the issue of fever if the epidural is a catalyst for a fever, but it’s a non infectious source, then we’re not worried that the baby will be born with an infection. Some theories suggest that the epidural along with other factors may induce an inflammatory response in the mother’s body. If this is the case, then it’s not likely that something is transmitted. To the baby and the baby doesn’t need antibiotics. So although we don’t have a definitive answer yet to this, this is an, important focus of study.
N: Yeah, everything was here. Everything was saved my life saved my babies life
P: yeah,
N: and they went we went into labor and delivery and the C section was fine and maybe boy was born. And they put me in a room and my in laws. Got to see my baby before I did.
P: Wow.
N: Yeah, yeah. And looking back that was one of the thing that was hardest for me, especially, you know, in the postpartum recovery was they put me up in the surgery board. They did the surgery. I saw that like they helped the baby’s butt up like you have a boy here he is. And they cleaned him up and took him away. And then they took me to a room to get cleaned up. And I don’t even know what happened what they were doing. You know what happened while they were cleaning me up but they gave me a picture. A photograph of this naked squirmy little thing that had salve in its eyes, you know had on its head and like, that’s how I got a picture. And, and that was like, again, like so surreal. So out of body. There’s not nobody nothing in my arms. My belly is soft and squishy. And I don’t have a baby. And, you know, we had we had called people before I went into surgery just because you know, again, kind of like the three months rule with announcing your pregnancy. It’s you call people because what if something happens while you’re in surgery? Which again shows how fearful we were?
P: yeah
N: what if someone dies with this C section. So my in laws were at the hospital. My mom had come to the hospital and my husband followed the nurses with the baby to see them wash baby after he was born. And he has very fond memories of walking into the room and talking and, and my son like instantly looking for him recognizing His voice. So
P: yeah, so that’s cool
N: has fond memories. Yeah. But it was I don’t know, maybe an hour before I got to even see him. And then like, just the surreal moment of is this little thing. This score me a little baby my and having them that first hold your baby.
P: It feels like you’ve been put through a very weird version of a birth in which you’re present but not entirely and they’re like not treating you like your president at any point. Right? It’s wacky to criticize you’re pushing Oh, you mean from the 1000s of times. I’ve done it before and you know,
N: absolutely
P: the consent thing is weird and shuffling too often. You have the baby off to different rooms, like Okay, we’re done with her. Let’s just that’s just weird.
N: Yeah. And you know, at the time, I don’t have the presence of mind or the perspective that I gained over the next few years to know to say something’s wrong with this. Yeah, yeah. You can’t say what you don’t know. And I absolutely did not know in that moment.
P: But it sounds like it fell off. You have nothing to compare it to.
N: Right. But it just has nothing to compare it to. Yeah, yeah. So you know, then I have the whole hospital stay and you know, people come to see the baby. And I was I was really dedicated to breastfeeding and that didn’t really work well, and baby was kind of grumpy. And it turned out that he had high bilirubin so he was orange and they wanted him to lay under this light. So not only do I have like the surreal meeting of my son, but now they say don’t hold him put him under this light. You know, don’t interact with him except to feed him you know in the hole coming in all the time to check your temperature so you never really get any sleep and just all of the things just was not a great bonding time.
P: Yeah,
N: my mom came to stay with me which really felt good, which was really good. Besides that, just the birth experience of not being considered an active participant in the birth to a person to whom it was happening, that they had to deal with in the process.
P: Yeah, all that sounds really hard to manage emotionally. And certainly your experience didn’t match your expectation at all. What’s postpartum like?
N: My dad came to stay with me after the birth, which was an incredibly generous gesture on behalf of my dad. But in hindsight, and even in the moment, like it was so awkward, like my parents were splitting up in the moment. My dad was like, one upping my mom by being able to be the one who was there. With me. He is not really a baby or a kid person. He was trying to like treat me like his kid. And at the same time, allow me space to be a mom. It was really uncomfortable. So I have these five days, you know where my husband is gone. He had to go back to work and I have to deal with this and driving back and forth to the doctor and baby not nursing and nobody. I had zero support of people saying yes you can rescue they were all saying Oh, baby’s not latching right give him formula. Like no person said, Oh, he’s not laughing. Let me help you.
P: Yeah.
N: And it was only my stubborn persistence that did that but he finally latched on to finally nurse and I finally did that and when that got easier, then I get this you know, whole emotional wave of you know how did that happen? And I think it was probably after my second child was born. But I look back on that time now and I say that that was trauma in my day.
P: Yup, yup
N: I knew that it wasn’t right that what happened wasn’t right and after baby was born, the next morning the surgeon had come in and you know, I expressed to him my disappointment in what had happened. And I said, is it going to be possible for me to have a vaginal birth in my next pregnancy? You know, I’m already planning my next one and I just got the first one in my arm. And he says, no, no, no, V backs are dangerous. You know, in the 90s. We pushed everybody to do it. It was this big thing and we damaged a lot of women, we damaged women in the V back process and we don’t do that anymore. So if you ever see sex and you always have a C section, and besides, your hips are too small, you’re really too small of a person to be giving birth anyway. And that was just that was his answer. And it kind of was weird in the moment when he said that because my mom might know again, my example in birth is smaller than me. And she had these three babies naturally and and she was fine. So how was that the case? And it was about 18 months. I finally am starting to heal. I say, you know, that was a really sucky experience. I never want to have that again. I know I’m going to have kids in the future. And I’m never doing that again. And you know, I start reading things on the internet. I start watching YouTube videos, and around the time that I’m thinking about all of this, we got pregnant again. Like we weren’t trying it. We weren’t not trying but it just happened. And it was good timing and it was right. And so I’m pregnant now. And I’m thinking about all of this, and that freaking doctor was absolutely wrong. I am capable of giving birth and I’m gonna prove it to him.
P: Thanks again to Nicole for sharing her experience. With this first birth.
Her experience of the hospital has a steep learning curve that she uses in future births her attempt to get the birth she was hoping for.
Thanks again. Thanks again to Nicole for sharing her story. Her experience in the hospital has steep learning curve that she uses in future births and her attempt to get the birth she was hoping for. Unlike many women who go into birth with a fully formed birth plan, it calls hoping to avoid another experience. She feels like a disposable contributor to the whole event.
Episode 67: The Power of Gut Instinct: Kristine’s Story, Part II
Episode 67SN: The Power of Gut Instinct: Kristine’s Story, Part II
Today we hear the second half of my conversation with Justine. Last week we heard about her first pregnancy that ended in a stillbirth. She just started talking about her second pregnancy, which was looking and feeling too much like the first one for her comfort. And she’s gone into the hospital at 27 weeks to get checked out. Near the end of our conversation, when reflecting on her experiences with pregnancy and delivery, Kristine wonders again about the possible impact that trauma could have on her pregnancies. To give us a sense of prevalent issue.
I spoke with a clinical psychologist who studies trauma and pregnancy. Her conversation is included.
cover art care of: Maddison, owner of County Road Crochet, find her work here
To find Kristine’s writing, go here
Preemie weight
https://www.whattoexpect.com/first-year/ask-heidi/premature-baby-size.aspx
Retinopathy of Prematurity
https://www.nei.nih.gov/learn-about-eye-health/eye-conditions-and-diseases/retinopathy-prematurity
Full Interview with Dr. Natalie Stevens:
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 girls. Today we hear the second half of my conversation with Justine. Last week we heard about her first pregnancy that ended in a stillbirth. She just started talking about her second pregnancy, which was looking and feeling too much like the first one for her comfort. And she’s gone into the hospital at 27 weeks to get checked out. Near the end of our conversation, when reflecting on her experiences with pregnancy and delivery, Kristine wonders again about the possible impact that trauma could have on her pregnancies. To give us a sense of prevalent issue.
I spoke with a clinical psychologist who studies trauma and pregnancy. Her conversation is included.
Let’s get back to Kristine’s story.
K: I got to the same gestational age or as became hyper concerned that something was wrong.
P: And that because you because you felt something different or just that I felt like
K: there was too much similarity. You know, gestational li small, not a ton of movements, you know nothing that should have really blossomed as a second pregnancy should you know once your body’s gone through that once but again, my first pregnancy being so a typical no one could really say well, maybe this is just what your body does. Or there’s you know, this is this wasn’t like that kind of thing, but I yeah, there just didn’t come a date in May 2008 Or I said I think there’s something wrong and going in kind of thing.
P: did you drive to the far hospital or you went to the near one?
K: Yeah, I by that time, we we’ve had a few emergency trips for various reasons. And it was very clear that if you’re, if there’s anything at all complicated about it, you’re gonna get transferred anyway, so you might as well just drive there. So we did and we were admitted. And that just started the whole process of figuring out how much of this is normal, you know, yes, your fetus is in distress you know, we don’t know but we don’t know. What’s what’s normal here. And
P: when they say the fetus was in distress because of a heart rate issue? Okay,
K: yeah, and and it became, you know, became our decision quite quickly, you know, within a matter of hours, you know, do you want to just wait this out and see what happens with this traumatic history, or do you want to start on I forget what it is. It’s a surfactant that they unstart to help the baby’s lungs in emergency situation.
P: So surfactant is a substance that makes the lungs more pliable. Premature babies can be born before enough surfactant has been made with the poor lung function
K: and or do you want to just deliver her early and take your chances on what she wants you can get from the NICU. And I don’t remember the pin drop of the decision. But I remember both of us being a man of our chances were better with her being delivered.
P: Yeah.
K: And it was not an easy decision. And it was not scary. But I did discover after the fact that the one thing that was right in that decision is that the NICU was very successful. They hadn’t lost a baby of any kind of distressing many years.
P: Oh, that’s great.
K: And the OB, I discovered after the fact is was a doctor that all the other nurses really wanted on their own case.
P: That’s lucky.
K: Yes. And so between the two of them, we had good feedback, but the OB was very much there’s something wrong my guess is that this is a dire situation. And the NICU, who’s a very cerebral research renowned, published researcher, was much more, you know, thoughtful, he’s like, Well, this could just be normal for your body, but that was came straight out of the confidence that whatever happened happened, and they would deal with it.
P: yeah, Yeah.
K; And, and we were lucky that those two things came together at the same time. So yeah, it was delivered in 27 weeks and five days.
P: What was that birth like?
K: Again, it wasn’t prepared for it. It wasn’t prepared for a cesarean. chose to be awake. Which for me is the cocktail of sedatives and and everything else that I am not familiar with. So when they say as they pull on plunger, this is going to give you a headache it Did you know immediately the headache what was cool about that the operating room. I learned after the fact again, that every single practitioner was a woman.
P: Oh, that’s so cool.
K: the anesthesiologist, t the OB forming a surgery and everyone else attending so
P: that feels comfortable. I like that.
K: Yeah. So they did an emergency C section as well.
P: It sounds like yep.
K: An emergency and then I didn’t see her for a whole night. We didn’t she was going in the afternoon. You know, whisked away before I saw anything. And then a whole night I mean, we got reports, but at the same time, you know, in order to see her you have to get yourself physically out of bed after a C section. Get yourself down there. And that’s after they’d already been flying you to start pumping. You know, in the night I remember thinking whoa, but at the same time, yeah. You have to do the things that no one tells you that you need to be prepared for but you do and yeah, so we got we did that here.
P: let me ask a your question about the birth? Did you hear her cry?
K: No, she was way too small. They you know, if, if there was anything to be observed, I think they could tell me or it’s written somewhere in the record. You know that she’s super active. I think about premies that you don’t realize you’ve never watched one in the NICU is that they’re really mobile. But think about how mobile they are in the womb. Yeah, that’s how mobile they are outside the body too.
P: Yeah.
K: And so they are flip flopping like little fish in their isolettes because they don’t have the body weight to slow them down.
P: Yeah, that’s interesting. Yeah.
K: So I think there was somewhere on our record saying that mobile you know, it moving the clincher that we didn’t know learn until after the fact is that she did not receive she didn’t require intubation. She came out breathing, and stayed that way.
P: Amazing. For 27 weeks. That’s amazing and stayed
K: that way for two full weeks.
P:I feel like you have an Olympian.
K: She does she does like to swim. She preferred to ride horses. And then when she did receive oxygen, this is jumping. headwind go back and get details. But it was supplemental, it was never intubated. And so the weaning process was was pretty easy. And I did meet other NICU families in that timeframe. Some of them are burdened by by oxygen for life. Yeah. And I remember thinking how much how cumbersome it was just to bring them home with a little aid, you know, an eight milliliters of oxygen, which is barely, you know, barely the threshold to even have to monitor for anything, but many families don’t have that experience.
P: So let’s talk about the NICU. How long was she there for
K: a shockingly short amount of time for a smallest us she was born at one pound? 13 ounces. So you don’t realize how light they are? Because they are they look fully formed? Yes, but they fit in the palm of your hand. And she was there from May 22 Until honestly the middle of July. So probably just under two months.
P: that Does seem really short.
K: Yeah, she came home weighing four pounds
P: How did that go? That’s easily My mind was had all kinds of issues but she was like six pounds. I found that very stressful. Yeah.
K: Oh, there’s I mean, they come home with you know, the tiny micro diapers that they only issue to hospitals and the preemie clothes don’t fit and, you know this and that. Well, it was you know, it was a pretty steady progression. But of course we didn’t know what the progression was at the time, the whatever the developmental hole in their heart muscle that needs to close between the ventricles that closed on time. Even though she was outside the womb. She never had lung pulmonary issues. They were concerned at the time they released her about her vision and her hearing. Hearing is all resolved and vision did not she was she didn’t meet the threshold for retinopathy of prematurity. And that launched into an infant laser surgery when she was a little guy but
P: okay, so retinopathy of prematurity. ROP is an eye disease. That’s my current preemies form before 30 weeks are babies who weigh less than three pounds at birth. ROP happens when abnormal blood vessels grow in the retina which is the light sensitive layer of tissue in the back of your eye. Normally the blood vessels of the retina finish developing closer to the end of 40 weeks. So babies born very early, these blood vessels may stop developing normally, blood vessels can grow in the wrong direction. Blood vessels are attached to the retina. So if they go too far in the wrong direction, they can pull the retina up off the back of the eye.
K: Anyway, coming home at four pounds. What was cumbersome to me was the fact that she did have that whiff of oxygen. And so then they come with a heart monitor. And so between those two things, you’ve got four wires tethering you to 10 feet of space and, and needing to change it a couple of times a day. 24 I can’t remember what that was. But anyway, it was a lot of stuff. And we had to we wanted to make sure we were at least responsible with it. So we had to stay overnight with her in the hospital under surveillance to make sure that you know we could monitor these systems.
P: And Did did you appreciate that adult supervision or did you think oh, we could definitely do this
K: at the time it was an all new parents stuff. I was like Okay, here we go. Because it just is what it is. And in the meantime, there had been this weird learning curve with pumping
P: Yeah,
K: because I you know, I’m felt strongly about it, but I had no idea of what kind of commitment pumping was when your intent wasn’t nursing at all.
P: Yeah.
K: And so I was pumping, freezing it in essentially, you know, those little two ounce urine cups that they issue from a hospital or they used to and happens to be the right size for feeding a NICU. Baby.
P: Yeah.
K: And so I had a stash of Lowe’s at the hospital to refer to it in that and then deliver it to the hospital, you know, every couple of days, but that regimen was working. And so they were very adamant about that. And so that’s what she started on and by the time she was able to take a bottle that she did and stayed on stage on a breast milk regimen. She had a few other supplemental weird things like liquid caffeine. couple little things that had to be added supplements to her milk. But the clincher there was a she refused to nurse and so even though she was home, the pumping continued. I realized many many women do that by choice. It’s their profession and they’re there. The rest of their life more, but at the time, it was still cumbersome. Maybe I just had old technology or bad bad attitude about it. I don’t know I did it. And I didn’t do it begrudgingly. But it was it was a lot.
P: That sounds like a lot. It’s you know, bringing home an infant under perfect circumstances a lot. So in this case, it’s just when we were in the hospital, we have baby in the NICU. Also, I wanted to stay forever with like, you know all the nurses every day. How can you send us home to be on our own? We don’t know anything. So I’m amazed that you did all that on your own
K: well, it was a leap of faith, you know, at the time because I couldn’t afford care for her in order to keep working. So I had some back and forth with my employer at the time as to when exactly my maternity leave should start. Because I had been spending oodles of time in the NICU and it didn’t work out very well. So I ended up needing to maintain whatever my insurance margin was from my employer, but I needed to leave my work to be able to care for her time. And you know, there’s a little tiny baby who sleeps even more than a regular sized infant and you know, so there’s a lot of downtime, but it’s still care. You find the replays, especially in a rural setting. And so that’s what we did.
P: How old is she now?
K; She’s 13
P: Oh my god, that’s amazing. Wow.
K: And what was even more amazing. Besides the scent was written off to the approved maturity is that nothing else seemed to falter. By the time she was a year old. She was on the growth chart for her actual age, gestational age, and has since gotten way off. She’s 510 her feet are size 11 and a half.
P: Wow. That’s amazing.
K: Yeah. Her father is very tall. And so at the time I remember someone telling me well, you know, typical, you know, she gets her overall stature could be stunted by the time I joke, like, Well, I hope I hope so. And she No, I think he’s plateaued out now. She’s taller than I am. She takes very seriously.
P: I don’t know if he was very funny. My daughter does, too. I don’t know if you’re a Phineas and Ferb fan. Have you ever seen that show? Yeah. Well, five for 10 is a flawless girl.
K; I will tell her that. That’s funny.
P: Never less than five for 10 My girls say it all the time. None of us are five or 10. So we’re all yearning for that accomplishment.
K: Yeah. Yep. I have to I have learned field to be as tall as she is. And it’s such a it’s such a strange thing to be looking her in the eye that that she comments on it every time.
P: That is amazing. Wow. Yeah, that is some journey. So with, I wonder with her birth, you didn’t examine the placenta or anything like that after the delivery.
K: I think there was so many things I didn’t know or think about there. She has that big fat medical record. Again, because her NICU primary was a researcher. I didn’t realize until after long months after maybe a year after when they were just codifying everything. That went into her care and everything they surveilled for a year or more that the surfactant they gave her at birth was some of the earliest they’d ever administered to a baby that small
P: oh wow.
K: And, you know, of course, I probably signed signing something that gave them permission to pursue that therapy. But at the time, I couldn’t No, probably couldn’t have lived with that information at the time. But you really
P: you wouldn’t have signed it. You wouldn’t have said yes to it. If you had known.
K: I don’t know if I wouldn’t have said yes, but I didn’t want to know about that risk. And I would have had an opinion about that risk at that time. But the way it worked out, you know, that’s what it is.
P: Yeah. In those emergency situations. It’s interesting to see what they would do. And it’s amazing that she spent such a short time in the NICU given how young she was. And it sounds like you didn’t get steroids before they delivered you to help with lung maturity.
K: Probably they probably did, but the window of time was too short. Yeah, yes. So the, you know, as you needed, what, eight hours, 12 hours, something like that, and the gap was only three hour.
P: oh Wow, that that’s kind of amazing, right? The progress they’ve made in helping premies to breathe is is an amazing accomplishment. Yep. Yep,
K: I follow up on that was good again, or hearing if good or vision is not a you know, not great, but it’s not a documented you know, when people from getting a driver’s license or anything that is isn’t a hardship that they will have dealt with
P: But does that mean that she wears glasses or it’s something more expensive than that?
K: She had surgery when she was an infant infant, like babies basically at her term date. And what was interesting about that time was that she saw an ophthalmologist at Mayo in Rochester. And they had recently changed the threshold for qualification for surgery, and it’ll have lowered and so because she was one of the first babies to meet that threshold, the entire clinic was looking at her she was probably served by 12 different physicians just to make sure yes, definitively, this qualifies and we’re going to do XYZ.
Some kids have that needs the same surgery and never need visual correction. In her case, by the time she was a year, maybe, you know, their eyes can still pass but by the time she was a year they were they were starting to look at lenses and then as soon as we could keep goggles on her head she started wearing lenses and then there was the biting your nails wait and see how long it takes for their eyes to fully adjust and settle and stop changing stop getting worse. So the first couple of years of her life and probably stabilized by the time she was around nine. But it is what it is. And I don’t think it necessarily gets worse. But the question then becomes what has their little infant brain done to account for the fact that their vision has always been lopsided, substantially lopsided, even with correction.
P: does that mean one I worked for them the other way better?
K: Yep, revision even with glasses is probably 20/40. And without it I don’t know. And and that launches into my most recent chapters, which is you know, how to address education issues, and how much of them can be pegged to prematurity. So vision was a first thing developmental delays. And, you know, I’ve been the one along the way saying, you know, what, yeah, there’s this, this and this happening where there’s clearly delay, but I don’t see the gap necessarily getting bigger. I just see that it’s a delay that we’ve defined a little bit better with each passing year. You know, is it a year, two years, you know, what’s, what is it? And then you want to say that you just learned to compensate for all for all the things vision for academic things that are academically challenging things that are socially challenging. In her case, it helps a lot but she is so called because she was there. And people wouldn’t notice that she might have any kind of academic challenge unless she was around and asked to do something that’s difficult for her
P: that’s such an inspiring story. That she’s done. So well. If you are looking back on this experience. Now, is there any advice you would have given to your younger self?
K: I’m not sure. Honestly, I think I’m just that much older than people who would be experiencing or pursuing anything. Even like what I experienced because of the age of the internet that you can, you know, as scary as it is to research anything medical on the internet, you have such access to all the scenarios. And I think you could at least learn more about what could happen and be aware. So you know, my younger self, I think it’s all the same options. I’m still learning and I’m now divorced, still learning all the same license that when your gut tells you there’s something wrong or stressful or toxic in your life, your relationship. It’s not always wise to just bootstrap it.
P: Yeah.
K: That’s you, you really have to stop and get to the bottom of those things because you know, whatever you want to read about epigenetic trauma.
P: So this is an issue that Kristine has brought up a few times how trauma could have affected her pregnancy, and the development of her babies I took this question to Dr. Natalie Stevens. Today, we’re lucky to get a chance to talk with Dr. Natalie Stevens, a clinical psychologist and assistant professor at Rush Medical Center in Chicago. Thanks so much for coming on today. Doctor.
Dr. Stevens: Thank you for inviting me.
P: I wanted to talk with you because you study the importance of the impact of a history of trauma on pregnancy, and how trauma informed care can benefit patients. But rather than distill all your work and effectively capture the scope, why don’t you tell us a little bit about your work?
Dr. Stevens: Yes, absolutely. Well, prior to going to graduate school for clinical health psychology, I trained as a childbirth doula, and I was trying to see which path seemed to fit most whether I wanted to go a midwifery or medical school path or more psychological path and I knew that I needed to have some experiences from the setting in which I would be working and it turns out that I chose the health psychology path which doesn’t involve providing any medical care but rather depends on understanding from the patient’s perspective, what it is like being in a medical setting when you’re going through some kind of health related experience. And so my research and clinical focus has always been on the transitions. of care, through pregnancy and postpartum which also includes fertility and fertility loss, other topics like that. And when I started this over 10 years ago, it the concept of trauma really wasn’t considered a lot of the attention. Back then was mostly focused on depression, preventing and treating perinatal depression. So that area has come a long way.
Paulette kamenecka 23:17
For sure. It’s kind of shocking that this is new, which given the pregnancy is not that new but so thank you for your work, because this seems vitally important. One thing that when we talk about trauma I think people can get confused by is, is what does that mean? Does that mean, you know, a child survivor of a war or, you know, what’s the scope of that? Can you maybe define for us what we’re looking at
Unknown Speaker 23:41
Absolutely. And it depends on who you’re talking to. Because when I started my work early on, working pretty closely with obstetricians and the obstetric residency program at Rush, the word trauma in the medical setting means a physical trauma that requires even more clarification. So a psychological trauma is more often what we’re thinking about when we use the term trauma and it’s an event that is a stressor that is out of the ordinary beyond the the intensity or level of threat to a person’s health, life, safety, bodily integrity than what is typically experienced.
P:Today, we’re gonna talk about perceived concerns about how trauma may have affected the outcome of our pregnancies. Can trauma cause slower growth for the fetus in utero and trauma cause issues with the placenta? Do you think there’s any connection there? And and, you know, is it related to premature delivery?
Dr. Stevens: Yeah, that this is such a fascinating and complex question. But the short answer is, yes, there. There are physiological things, processes that have been sort of teased apart by various researchers and projects to try to see what the connection might be between both having a history of trauma, but not necessarily a diagnosis of PTSD having a history of PTSD that isn’t present during the pregnancy. Or having PTSD while you’re pregnant, that has been examined in relation to prematurity, low birth weights. And those are those are the two primary outcomes, but there are a number of complications and things that quote unquote, can go wrong. That I think feed into a lot of the anxiety that pregnant people feel. So there are other things going on here. Trauma doesn’t only lead to PTSD, there’s also the risk of depression, substance misuse and anxiety. So I was thinking about that and the story you described, that person doesn’t have to have all the full criteria for PTSD in order to have a lot of hyper vigilance in the subsequent pregnancy when all of these signals are coming up that remind them in parallel. What happened before. So then there are other studies that have looked at anxiety symptoms, not specifically traumatic stress symptoms, but anxiety symptoms, that have also shown an association with these outcomes. But I think the important thing to remember about all of that is that this is the larger scale epidemiological research and it’s really, really difficult to if not impossible, and as researchers and scientists we don’t we don’t do this to extrapolate from those findings to an individual case. So the other thing I think it’s important to mention, and there’s some really great, accessible information at the National Center for PTSD website that talks about different risk factors for PTSD and how women are more likely to develop it than men are. Part of that is greater exposure to trauma, greater exposure to things like sexual violence, which are more likely to lead to PTSD and that the key here is the idea of what what does the brain do, what does the person’s thinking do or how does their thinking change as a result of the trauma? And so there’s some evidence to suggest that women are more likely to blame themselves for things like sexual assault, but also the instance you’re describing something that happened to my pregnancy and that self blame coupled with the social support, not not having those supportive people around you, that you feel safe and and perhaps are helping you to challenge that narrative are really important process. So I’m speaking more to the psychosocial processes because that’s more my area, but there is absolutely some fascinating studies that I have read about the links between trauma and inflammation. The way that it affects the fetal placental unit, you know, this kind of unit where the pregnant person’s body and the fetal unit are coming together. And there are certainly many studies that have pointed to, although not completely described, or found, that there’s there are alterations when there’s a history of trauma, even even epigenetically even in previous generations. If I can repeat back what I think they’re saying is two things. Thing Number One is there’s definitely research on the fact that history of trauma and maybe trauma during the pregnancy can have physiological effects that might be correlated with low birth weight or prematurity that can’t explain one person’s experience. But he somewhat natural inclination we all have because the pregnancy is going on in our own body to claim responsibility for the outcome is not helpful and probably not right, given how complicated this
P; process is. Right? If you had that much control over your own pregnancy, everyone would be born with like an eight pound share. Right? Exactly
Episode 64: Giving Birth to Motherhood: Amie & Katie
Episode 64SN: Giving Birth to Motherhood: Amie and Katie
Today we hear from two women, one’s an author and generally in the book world and the other is an author, grief counsel and therapist. Individually, these women encountered challenges with their own pregnancies. They’ve come together to write a book that helps women to process the events of their pregnancies and birth by writing about it.
To see more of Amie’s work, click here
To see more of Katie’s work, click here
To find their book, Giving Birth to Motherhood, click here
HELLP syndrome
https://my.clevelandclinic.org/health/diseases/21637-hellp-syndrome
https://www.preeclampsia.org/hellp-syndrome
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. Today we hear from two women, one’s an author and generally in the book world and the other is an author, grief counsel and therapist. Individually, these women encountered challenges with their own pregnancies. They’ve come together to write a book that helps women to process the events of their pregnancies and birth by writing about it. Let’s get to their story
So thank you both for coming on the show. Why don’t you introduce yourselves and tell us where you are and a little about your background.
Amie: Yes, so I’m Amie McCracken. I’m originally from Colorado, but I live in Munich, Germany now hence having met Katie. She’s also here. And I’m an editor and author, a book designer. I worked in kind of the book world. But when I had my son, it brought up a whole different topic that I wanted to write about, about birth and all that stuff. So that was how I ended up writing a book on that topic.
Katie: Yeah. And I’m Katie Rossler. I’m a transformative grief guide and licensed counselor and author as well. And this is my second book that we’re coming out with. And I have three kids. The first one was a quite traumatic birth experience and so when Amy and I first met, somewhere along the lines, we started to talk a little bit about birth story somehow it really did come up like quite naturally and we shared our stories and from that, we knew there was a partnership later on. We’ve become great friends, but we knew there was a partnership later on it and writing something to help others.
P: And Katie, what puts you in Germany?
K: I married a man with an accent. You know, they hook you and pull you in and you’re like, Oh, sure. Sounds great. But I grew up in a military family. So moving around, was like, Yeah, I can live in Europe. I had lived here before. Yeah, but now it’s six years here. And I’m like, Oh, we’re staying over here, which I do truly love. I mean, I’ve talked about this. It’s, it’s very hard once you really fall in love with the place and you get used to it to go back. I don’t know.
P: So I’m guessing you’re both fluent. In German.
K: Amie is me, not so much.
P: So you can you can live there easily with mostly English.
K: Yeah, we’re in a major city, so it helps. Awesome. Great. Yeah.
P: So why don’t we start talking about your book project that you get together on birth? Stories. So what’s the name of the book?
A; It’s, let me get the full title. So that I have that. It’s giving birth to motherhood, embrace being a mom through the powerful healing process of writing your birth story.
P: Cool. So we’re all three of us very much aligned here. So would you like to talk about specifically what brought you to this project? And then we’re what the project does for other people? Sure,
A: definitely. Definitely. So initially, I when I had my son, I thought everything went fine. I mean, it didn’t go fine. It was problematic. It was traumatic. It was difficult. But he was healthy. I was healthy. So I was like, everything’s fine. Everybody told me that everybody was like, everything’s fine. But I sat down when he was five months old to write down what happened just for my own memory. And through writing that I started to discover what actually went wrong and that I was actually angry about what went wrong, and that I was very frustrated by the control that I lost.
P: So I asked, let’s go slowly here. So the issue here is the birth itself, the pregnancy is fine
A: sort of so I’m a type one diabetic, so the pregnancy was high risk. Anyways, that’s how I ended up in kind of a more problematic delivery.
P: What is it what does it mean to be a type one diabetic and pregnant? Why is that immediately high risk,
A: for the same reasons that gestational diabetes has high risk tendencies, basically, the baby will grow larger because my body has harder has a harder time processing insulin.
P: Even if you’re even if you’re like on medication, and it’s controlled.
A: Yep. Yep. But I have to be much, much more controlled during the pregnancy in order for the baby to not grow too big. And so what ended up happening is I was induced at 37 weeks because he was too big. So yeah. And it like that, that brings up its own complications, because then vaginal births are more difficult because the baby’s bigger and all kinds of things but also, when he comes out if my blood sugar was not controlled during delivery, he could have a low blood sugar which ended up happening so he had to go to the NICU and be taken care of right away. Yeah, so it it just presents some problems, which I knew all of that. ahead of time. I was aware of it. I was ready for it. I was prepped for it, which was actually quite different. For Katie’s story. She was not prepped for a traumatic birth. She was prepped for everything to be normal. But for me, it took writing my birth story out to realize that I was angry about what had happened that I was not satisfied with how it went down.
P: What would you have changed?
A: I don’t know that I could have changed anything. And that’s unfortunate about how the system works is that what ended up happening is in the middle of well, near the end of my delivery when they decided to go for a C section because I wasn’t progressing. They took over the control of my blood sugars that I had been controlling them and they took that over they put me on an insulin drip instead of my insulin pump which I had control over. And my blood sugar went up from there, and they didn’t quite deal with it. And so then when he came out, his body produced too much insulin that made his blood sugar low, and I could have prevented that. But it felt like the system didn’t allow me to prevent it.
P: Did they take away your control because they thought you’d be incapacitated by birth or?
A: Yeah, so essentially, when they were prepping for the C section, they were like, you can’t possibly take care of this while you’re on the operating table. So we have to now take care of this. They would do that also for a diabetic who went into a vaginal birth when you get kind of through transition they take over because you just can’t pay attention anymore. So on the one hand, it’s a good thing. I mean, they are they are taking care of it, but I feel they didn’t pay enough attention, but then they also didn’t give me options afterwards.
There were a lot of things. If he had breastfed right away. There’s a lot of sugar in the colostrum. If he had been left attached to the umbilical cord, there’s a lot of sugar left in that blood if he had been put on my chest that can help regulate blood sugar, but I wasn’t allowed any of that because the system calls for a C section where the baby is kind of whisked away, right away. And so I lost that control. I lost the ability to bring his blood sugar up in ways that naturally my body could have done so in part it was frustration at my body and frustration of the system.
P: Yeah, that sounds like that sounds extremely frustrating especially since you’re used to type one means you were born with it. Is that what type one?
A: No, I’m I wasn’t born with it. I was 11 but I’ve had it
P: for so long that you have for most of your life control your own blood sugar. So to have that whisked away at such a critical time I can imagine it would be would feel really unnerving and not right especially I mean, I guess if he if the care team had taken over and he did not have high blood sugar. Yeah, you’d have been okay with that.
A: I think yeah, I mean, it would have gone different if it had been a vaginal birth. They could have left the cord attached. They could have put him right on me. The C section definitely complicated things. But of course in other countries in Australia, I know specifically in Australia, they do allow skin to skin contact on the C section table. They will put the baby on mom on the operating table while they close mom. And we had even asked if they would let my husband do it because any form of skin to skin will regulate breathing blood sugar, heart rate all those things. And they said yes, so he had his or jacket on backwards so that he could put him on his chest he took his shirt off and had the OR coat on but then they took him away and just didn’t didn’t let my husband do that either. So that was definitely anger the system. They even took him to the NICU and didn’t tell us where he was they my husband had to go searching around the hospital for him
P: Yeah, that that feels like a dream where you show up to a test with no clothes on or something. Exactly. Where is my baby? I’m sure you know that the placenta develops insulin resistance later in the pregnancy. So it becomes harder to regulate.
A: It’s nuts because actually the hormones in the first trimester make you super insulin. Sensitive. So you’re full of very, very low blood sugar in the first trimester. second trimester is that honeymoon period. And then third trimester you become resistant so then you need more insulin. So it’s just it’s it’s massively frustrating to to control all of it because it’s really even though I’ve dealt with it my whole life. It was very different in a pregnancy, adding on the worry of like what it’s doing to the baby. I’m like, Oh, I gotta get this right.
P: And I can’t imagine it’s made worse by the fact that everyone told you it was fine.
A: Yeah, I mean, he was healthy. He came out of the NICU after a couple of days and everything was okay. We went home. I was okay. We were both healthy. And yeah, but I think I really started to realize it because I would see articles on Facebook, about like skin, skin and how good it is. And I would just be mad. I was so angry. And so when I sat down to write it down, that was when I realized it was about the control that was taken away from me. I was frustrated. I wasn’t happy with my birth. I really needed to process it and heall it and understand what happened. And so then that brought up the idea of like, I need to help other moms do this. I need to write a book that teaches them how to process their birth by writing about it. So that’s where the idea was born was. I processed my own birth by writing it down. And I filled a whole journal. It was like, three days straight, where I was just writing and scribbling and going crazy.
Paulette kamenecka 11:00
So that’s amazing. And so and so now let’s was hear how Katie comes into the same vein. Why don’t you give us a little like, sense of what your experience was
K: the traumatic the other traumatic birth right? Yeah, so I knew right I had the boring pregnancy, the textbook pregnancy, and then I read about the book but like I never read anything about C section, because everything was progressing normal, flipped, everything was good. This
P: is this the first birth?
K: this is the first birth. And then it would have been five days before she was due. So she was born on July 6, and fourth July fireworks are wonderful. Then on the sixth, I had a couple of days where I noticed some upper back pain that was just a little off and felt like I assumed I’d done the like moving furniture in the baby’s bedroom. And you’re not supposed to do that. I just pulled something but it was like progressively getting more painful and at night it was really really bad. So I woke up that morning and I just went ahead and called my doctor was like, you know, hey, maybe just muscular like let’s just beach like we don’t come come into the hospital. I’m on call this weekend. And I was like, oh, you know, that’s sort of a dream. Like your doctor is the one who’s on call, like, Okay, sure. Yeah. So we go and they take my blood pressure and they’re like, have you had blood pressure problems during this time? You know, it’s funny here in Germany, you get this mother book, like it’s like a past book that keeps all your blood pressure’s all your all your stuff. And I look at that now I’m like, Man, that would have been amazing to have because I was like, No, it was always normal and like perfect textbook, and I wish I’d been able to show the book like, here’s all the stuff.
P: Yeah.
K: So they call the doctor because every time they took it off, like I’m sure I’m just nervous being here and it’s just affecting me and like No, no, it’s that. Like it’s it’s really quite hard. And they call the doctor and she ordered blood work. And that’s when they found that I had HELLP syndrome and showed up really fast. Some people get in their second trimester, some getting the third and then it’s you know, they have a little bit more warning than I did. And yeah, what was happening in my upper back was my liver was struggling. And so I was feeling the basically the spasms or pain of that. And they were prepping, they had to prep me very quickly for a blood transfusion. And they were like, you know, we just don’t know we don’t know if you can clot and My poor husband, he he was just a big shock to both of us. I was still willing like, oh, everything’s great. Everything’s fine. I wasn’t feeling worn down. I wasn’t feeling like something that’s happening. And the doctor she was an amazing doctor, and she truly said like, you know, we don’t have time to even induce you. Like baby really needs to come out because it’s not anything wrong with a baby. It’s basically killing you
P: Yeah,
K: so it’s time. It’s just time. And yeah, it was one of those where you don’t have time to think you go into like Project mode and truly was primed for a moment like that. Throughout my whole life has always been, you know, crisis management or helping with you know, in the university helping with different things. I always had training on this I knew exactly call my mother do this do all these things. And it was after she was born. So I got I got to meet a 45 minutes after I was under my husband was in the nursery waiting for her. Nobody got to be in there with us. It was after that that it kind of set in I was on magnesium sulfate. It was a big shock to the system and then I had the sweet little you know, baby which I attached very quickly to her and my husband for man was like for three days having to just do it himself. Like get her dressed change a diaper quarterback next to me anything I needed, so exhausted, and I had not for a whole year after saying I gave birth, because for me giving birth was vaginall. And it was wasn’t until I did EMDR therapy that it was like okay, I can say I gave for and it wasn’t about control of the system. It was my own body. A feeling like my body had failed me. And that you know, like, how does this happen? Like, everything was textbook and then all of a sudden it goes south really quickly. You know, and it’s kind of like what he did. Like you just learn as much as you can after the fact and you start to better educate yourself on some of the things and my doctor handled everything so wonderfully. But there were parts of the story that did upset me. And I realized, you know, really it was also writing the story. And I actually had two miscarriages in 2019 and was able to reconcile and heal some of the stuff from the first trauma of my daughter being born by the anesthesiologist, at that first birth was talking about the murders that had come through the night before and all the blood and glory all the seven I’m like I’m about to go under and you’re talking about these deaths. So when I had to have a operation for the first miscarriage, I was like Can I speak the anesthesiologist and she came in she’s like, What can I help you with it? I was like, you are only allowed to talk about positive things around me. This like weird, like, only positive thing and I am walking to the OR. You’re not wheeling me on anything. I am walking I can get up I am going like there is nothing where my body feels like I can’t do I can’t take care of it kind of thing. And it was amazing. I had a wonderful team. I was visiting my family in the States when it happened. And it was just an amazing doctor and nurse staff team as well. And we’re like only positive you can you’re in control. You can do this whatever you need. That healed that first trauma fully after that first year with EMDR therapy being able to say for and then being able to heal the I had a voice and I could say hey, stop talking about things that are negative when I’m about to go under and I don’t know if I’m gonna make it that was really really powerful. Really, really helpful.
P: Yeah, that sounds like a lot of good lord. After the three days I’m like he’s gonna sulfate blood pressure’s normal. Everything.
K: You have to stay on blood pressure medicine for I think I stayed on for about four to six weeks mine my blood pressure regulated pretty fast went back to normal so you’re you’re checking it every three to four hours still at home, and you’re taking the medicine. And then there’s a point where as I with my third child, I had blood pressure issues after the birth and there’s a point on that medicine where you’re starting to regulate and then it gets to be too much and you get really lightheaded easily so like, call them you know, like it’s time to get me off with me off this. Yeah, so they had to put me on that to just keep things regulated until my body could just go to more baseline status.
P: And so being a therapist, my sense is you understood the obviously the power of talking about what happened, but there’s something special about writing it down, right?
K: Yeah, completely. That was the big thing that when any came to me and we really started talking about this book, it was like it needs to have a therapeutic side to why writing is going to be so helpful and there is something about seeing it in front of you because when you speak it, it’s not there anymore. Unless you record it and watch it again. When you write it and you have to look at it, you know or type it out and you look at it. There is a you’re more in touch with what happened in a big part of the book, we talk about how you really get to be the observer versus go through the trauma again and that and we guide you on how to do that in the way that you storytel And the way that you write about certain situations that occur. It’s not to dumb anything down or make false positive it’s truly just still see it on the paper but not feel it where you feel like everything’s just been ripped back up again. And that was really important for both of us like we wanted this to be a therapeutic tool not a write it all out and then like then good luck… Hey, even up up you know, we teach a lot of therapeutic tools of how to deal with the emotions, how to deal with the analytical mind that wants to attack, criticize your writing. And then at the very end, we talked about closure practices and what to do with your birth story. Because most of us feel even more empowerment by helping others to not have to go into what we did and that was a big thing that he said like this book is going to be about other women able to save each other from future situations and maybe change the system. By being able to speak out more so many of us forget you can go back and talk to your doctor or your nurses afterwards. And they feel like oh, you know, it’s not my place and things like that. But the reality is is you are paying them to do the service. And they are human. They’re going to make mistakes. That’s like me as a therapist. I am human. I’m going to say the wrong thing. I’m going to ask the wrong question. But I know that people hold me to a certain level just like we do doctors and nurses. So talking with the person and then being able to go like even just saying I’m sorry, or I didn’t realize or you know, you were our fifth C section that day, and I was just exhausted.
P: Yeah, context can be really helpful. Right?
K; totally
P: Yeah. So I totally agree that conversation is ephemeral and so it’s hard to get the same feeling from it. It’s hard to become the observer that although there is something I think in the back and forth and having people ask questions, and it’s, that’s a little bit like editing, right, where you’re reviewing things that you said, and is this true? And how do I feel about this really, and especially in your case, Amy where There’s there’s a lot of subtlety to it. And there’s a lot of things that go on slightly differently. You might feel totally differently about your birth story.
A: Completely. Yes. But I think that’s why writing it down and understanding what did happen. Was was what helped me is that beforehand, there were a lot of what ifs there were ton of what ifs and so I researched the heck out of it. I knew everything that could possibly happen. But it was the processing afterwards and understanding the path that things did take what reality actually happened and we talked about this a lot in the book we actually start out with looking at what your expectations were; what you hoped was going to happen what you dreamed for. And then you’ve turned that around and you compare it to what really happened and why did that not work for you and why did you feel the way that you felt? Because, again, we don’t have a ton of control over how it plays out?
P: Yeah, I think you’re I think it’s smart. And I’ve spent a lot of time on the podcast talking about what your expectations were because so many of them are so deeply varied that you don’t really know about them until they’re frustrated right until it doesn’t happen. So like Katie and your story where you’re saying, I couldn’t call it a birth because that wasn’t my idea of a birth. That idea came from somewhere, right?
K: Right. And that was something that when we the expectation section is quite thorough on you know your mother women’s voices near life, social media, society, culture, religion, all of these things that really embed messages into your mind. And the beautiful thing is the book is a journal as well. So it has lots of prompting questions. So you’re not just like, okay, read this. Now. I’ve got to figure it out. Even in the writing of the story. There’s so many questions to help you break it down. So you don’t get caught up in the Okay, where do I go now? Or how do I do this? And with the expectation section, I think it really helps you start to put on paper oh my gosh, I I thought this thought this
P: Yeah,
K: you know, there are simple things that most of us don’t even realize that we actually think like that good things happen to good people and bad things happen to bad people. That’s why we go why is this day like this thing? What did I do to deserve this? So many women feel that way when their birth doesn’t go, right? What did I do? What did I did and they put the blame on themselves. And when you sit down and write down what expectations you have in life, and of birth and pregnancy, it helps you go like, well, that’s kind of crazy because that’s not how life really goes like okay, so how do I start to rewrite those beliefs because I’m now raising a little being and I don’t necessarily want them to, especially if I’ve three girls, I don’t want them to fall into that same pattern. I want them to know that that scar that mom has is the same way that they email is one of them came out badly to C section. All of it was giving birth. So I talked about that, you know, how do babies come out? Well, you know, there’s there’s a couple of ways here and here. You see this this right here this bar, how to um, you came out. One of your females are here, and it just normalizes it. I didn’t have those conversations growing up. I grew up in a Southern Baptist family. We didn’t talk about things. You know, there was no, it was only on my birth was fast and simple and easy. Or for my mom the birth was difficult. But there were C sections in my family. And there were miscarriages or things like that. So it’s, you know, you just didn’t talk about those things. And that’s something I want different. You know, it’s a generational thing that I’m breaking, really that we can talk about our bodies and how babies come out and how difficult it can be.
P: Yeah, I think it’s unfortunate that feels like culturally there isn’t space for and so like all these birth stories, have things about them that are complicated and hard and frustrating and not what we expected and beautiful and completely miraculous to have a healthy children at the end of them. Right. So it’s just a much more complicated story is kind of the real one, but that’s never what you’re sold, right? You’re sold ice cream and butterflies and that’s all there is it’s
K: Yeah, rainbows and unicorns always turn out that way and we even address you know, those moms who did have there are some moms who have wonderful birth experiences. And then that want to sell you on how they did and how you can follow in their footsteps. Our bodies are all different, like my HELLP syndrome was not anything on my health radar. Whereas with Amy having type one diabetes, she already knew, hey, I have these risks. You can’t then go oh for both of you it would work to do this, like this. Yeah, no birthing and all these things like it’s beautiful that there’s all these resources, but it’s not a one size fits all.
P: Yeah, for sure. I’m guessing Amy and Tom will correct me if I’m wrong here but even preparing for things that might happen. feels different than actually experiencing it
A: very much. Very much so because I knew the clinical terms for things I knew what to, quote, expect, but I didn’t know what emotions would come along with that. I didn’t know how it would feel
P; Yeah.
A: To experience all those clinical terms that I understood and I my my dad’s a veterinarian, so I grew up in a somewhat medical family like we do understand how bodies function.I’ve watched Cows and dogs and horses give birth and sheep like I’ve watched a lot of animals give birth but the the internal the mental, the like going through it is just so different than reading in a book or watching someone I took photos of a friend at her birth so I had been out of birth. And it still you can’t know what to what you’re going to feel what you’re going to experience internally. That that mental hurdle that mental marathon that you’re running, when you give birth is just an explanatory like you just you cannot explain it
P: Yeah, the embodied experience like type defies language, right? It’s
A: very much and that we kind of discuss that a little bit in the book as well because we want women to understand that your identity is entirely new from one moment to the next you you go from a pregnant woman to a mother, and it’s just a massive shift that isn’t really mirrored in anything else in life. There. There are other big shifts. There are other big changes in life. But that is one that is so wholly and completely different. And it’s it it takes a little bit of getting to know yourself again, because you are a new person on the other side of it.
P: Yeah, I interviewed someone not that long ago who said like the old you is gone, right? There’s no cross that threshold and then you without children no longer will ever exist. And it’s just a completely different space to occupy, which is which is a giant thing that we don’t talk about at all. You know, we talk about the strollers and the Boppy and the you know, baby clothes but not the really important thing. So it’s so great that you guys are are talking about that.
K: Yeah, I mean, this is this is why there’s so much of the grief work I do because people hit the midlife crisis and they’re just like, this isn’t the life I signed up or I’m like because you weren’t grieving all the shifts and changes up until now.
P: Yeah,
K; when really look at that. That career didn’t work out the way you thought or motherhood wasn’t what you thought it would or being married or divorce or you know all of these things. And if you’re not grieving men doesn’t mean like you’re holding on to it and wailing and all that but like, really, truly embodying grief and going through that work. Then you’re going to hit a point in your life where you really feel the identity crisis that makes you kind of go do other things that you regret later on or hurt other people are really implode on yourself. So for us it’s like a good stepping stone of like, okay, we want this experience
Unknown Speaker 0:03
It takes a little bit of getting to know yourself again, because you are a new person on the other side of it.
P: Yeah, I interviewed someone not that long ago who said like the old view is gone, right? There’s no you’ve crossed that threshold and then you without children no longer will ever exist and it’s just a completely different space to occupy, which is which is a giant thing that we don’t talk about at all. You know, we talk about the strollers and the Boppy and you know, baby clothes but not the really important thing. So it’s so great that you guys are are talking about that.
K: Yeah, I mean, this is this is why there’s so much of the grief for it and I do because people hit the midlife crisis, and they’re just like, this isn’t the life I signed up for. I’m like, because you weren’t grieving all the shifts and changes up until now. Yeah, and really look at that. That career didn’t work out the way he thought or motherhood wasn’t like he thought about it or being married or divorce or you know, all of these things, and you’re not grieving. That doesn’t mean like you’re holding on to it and wailing and all that but like, really truly embodying grief and going through that work. Then you’re gonna hit a point in your life where you really feel the identity crisis that makes you kind of go do other things that you regret later on, or other people are really implode on yourself. So for us, this is like a good stepping stone of like, okay, we want this experience, to not be something you own for so many years that you don’t later on, though you are.
P: So it sounds like what you’re saying is processing the experience in some way once you integrate it into your life to get a better sense of where you are in the moment.
K: Yes, that’s a wonderful Yeah, summary.
P: Okay, good. That sounds that sounds. That sounds amazing. I love that there’s space to journal and that there are prompts because for many people, it is a giant experience where it’s hard necessarily, unlike your experience, Katie where it’s obvious where the extreme elements lie. You know, for some people, it’s all over the place, right? There’s something weird in the first trimester or the whole pregnancy felt weird or something right? It’s just it’s not so cut and dry. So those signposts about like, what are you feeling about this or that seem like they’d be totally useful to help people plot that out?
K: Yeah, a lot of what we were finding already in the market around the story of create your birth story, didn’t guide you enough. Didn’t really walk you through the steps. And because of that, you lose motivation. Yeah. And with each tab or to have a chapter that has so many questions, that kind of keeps the ball rolling, you stay invested, and you start to really see the healing power of what you’re doing.
P: And do you guys have like a repository for those stories once women write them? Like a website? With the book or
A: that’s, that’s in the works? That will be a thing? Yes, definitely.
P: That feels like wailing wall or something. That’s cool.
A: Yeah, I mean, one of the things we want to be careful of is not pushing that, that same trauma onto the next mothers. So we want to make sure that if someone is sharing their story, that they’re doing it in a way that shows that they’ve healed that shows that they are empowered by learning their story and working through their story. Because what we’ve found is that you know, you have grandma who comes in and tells you your baby shower and you’re just like, Okay, I’m terrified now. Thank you. And we don’t want people to be pushing their trauma onto everybody else. So the end of the book really works towards finding ways that you can help others using your story. So either you learn how to tell your story in a way that doesn’t everyone else, or you potentially create an oral version, which is what Katie has done with her girls is created an oral version for your child which helps you understand how to tell the story in a way that it doesn’t get rid of the nasty parts, but it makes them powerful, it makes them mom went through this and she did it. And that’s the good part of this. So yeah, we
P: are able to see the action. And I would say good news. Bad news is that, no matter what, although, I’m sure if it’s your grandmother, you think there’s genetic connection, like maybe I am in the same line or we’re dealing with our mothers, right? How were how were their births to kind of project what will happen with us and mine bear no relationship to my mother’s. So I don’t know how useful it is but but like I can feel the nervousness when you describe like the grandmother saying that to the granddaughter, but I think, you know, this is like a tricky line to walk out. Sharing the trauma, scaring other people. I think it is it is necessary to get really, really out there to get like a true narrative of this is what it could contain. This is how I managed it
A: . Yeah, I think and I think you’re less likely to push the trauma on someone else if you have processed it. The problem is grandma has not actually dealt with the fact that her birth was crazy and insane and scary. And so she’s just kind of pushing the scary onto the next person. Whereas if you actually process it and deal with it and heal from it, you can still share the parts that were not so great, but not in a way that’s going to trigger the trauma.
K: and I think they can sayThings like I wish I had told the nurse I wish I had stopped and asked more questions or that allows that to go okay, let me make a mental note of that or tell my partner we need to ask a lot of questions and write my questions down. It’s how you start to help others by sharing also when you realize looking back wished have been done differently. Or you know what, like you said sometimes, context helps so much so being able to heal that you can say hey, well I realized my doctor is human, and he or she will make decisions on the spot visual variety. That then are out of my control unless I yell stop. Yeah, no, you don’t have the right to do that. But we’re not going to do that because this is a doctor bus. So it allows the next generations of moms coming up to think differently in the moment or to feel empowered to get a doula or someone to be in there with them that can empower them. Because they thought oh, wow, you know, story, and I really need another support person because my husband might almost pass out. Might not be able to handle what comes to me. And that’s a lack of any. Why not? Why not have that extra support? So really, that’s where we think it can start to shift shift how people speak to the system, how they handle things going on around them and how they feel more empowered.
P: That’s awesome. We remind us again what the title is?
K: yes, it’s giving birth to motherhood.
P: that’s a great title. So congratulations on that. Congratulations on the book and where and when can we find it
We’re launching it to tember 26th Although around the first week of September, it will be available for pre order. Okay, cool. That’s anywhere, anywhere, anywhere and everywhere and anywhere.
PThat sounds awesome. Thanks so much for coming on and sharing this is such a great idea.
A&K: Thank you for having us.
P: Thanks again to Amy and Katie for sharing a little bit about what motivated them to write the book, Giving birth to Motherhood. I love it when someone uses the challenging parts of their own experience to try to pave the way for an easier experience for the people who follow after them. I’ll share links to Amy’s website and Katie’s website in the show notes. You can check that out at war stories from the womb. Com. Thanks for listening. We’ll be back next week with another inspiring story.
Episode 63: Suddenly Blindness, a Run in with Preeclampsia, Diana’s Story, Part II
Episode 63 SN: Suddenly Blindness, a Run in with Preeclampsia, Diana’s Story, Part II
Today we hear part two of my conversation with Diana about her experiences with pregnancy and delivery. Last week, our conversation ended with Diana 41 weeks pregnant, partially dilated, stomping around in the hall of the hospital trying to get her baby to move into a better position for birth. When all of a sudden she loses her sight. We’ll pick up the conversation where we left off in this part of the episode I also include the insights of a doctor training in ophthalmology and neuro ophthalmology.
To find Diana’s writing, go here
Bell’s Palsy in Pregnancy
Sarah Ruhl’s book is here
Risk of Preeclampsia in a First or Second Pregnancy
https://www.preeclampsia.org/the-news/community-support/after-preeclampsia-another-pregnancy-or-not
Abortion Statistics
https://www.guttmacher.org/united-states/abortion/demographics
Audio Transcript
Paulette: Hi, welcome to war stories from the womb. I’m your host, Paulette kamenecka. I’m an economist and writer and the mother of two girls. Today we hear part two of my conversation with Diana about her experiences with pregnancy and delivery. Last week, our conversation ended with Diana 41 weeks pregnant, partially dilated, stomping around in the hall of the hospital trying to get her baby to move into a better position for birth. When all of a sudden she loses her sight. We’ll pick up the conversation where we left off in this part of the episode I also include the insights of a doctor training in ophthalmology and neuro ophthalmology.
Diana: So let’s go back to the chronology they told me to go stomp down the hall sleep at night I’ve been in active Labor’s you know for at least 12 hours maybe longer but also I’d been in that prodromal labor for days have contractions that stop and start but little very painful contractions. They just weren’t doing anything. And I’m stomping and like half naked I mean it must have been looked absolutely insane. And then I went blind. I couldn’t see
P: out in the hole while you’re stomping?
D: Yeah. And I started screaming I can’t see anything I can’t see. And I think my husband had been with me and he calls for the midwife or whoever is attending and they kind of come and get me back in the bed. And I checked my blood pressure. And it is sky high. I mean, I think they’d been monitoring it a little but I hadn’t really shown signs that were in the danger zone beyond maybe like a little bit of elevation. But I had severe preeclampsia. So much so that I had lost my vision because your brain swells and, you know, something had happened to the ocular nerve and I could not see I was blind. And that is where at that point. I pretty much don’t remember anything and I have to take the rest of the experience from my husband Tim story where it’s very, very serious.
P: Today we’re lucky to have Dr. Avi sonra on the show. She’s a doctor trained in ophthalmology and neuro ophthalmology and currently finished her training in neurology at the University of Kentucky, Dr. Abu Samara, thanks for coming on the show.
Dr. Abusamra: Oh, thank you very much for having me today.
P: We’re here to talk about Diana, who runs into severe preeclampsia many hours into her first delivery, and it takes the form of high blood pressure and complete blindness she was shocked by the sudden onset. I’m wondering if preeclampsia tends to overtake a person so quickly.
Dr. Abusamra: Yeah, yeah, it can. definitely can. So you know, the definition of the clamp says the new onset hypertension, and that’s associated with the proteinuria. Their success should be certain amount of protein in the urine. Or the new onset of hypertension in a patient who did not have hypertension before in association with some organ dysfunction. And I think the heart and the brain and it can effect the eyes so yeah, it can it can make the patient turn around so quickly.
P: Can you explain how preeclampsia creates blindness?
Dr. Abusamra: Yeah, so most of the DataLogic changes that happens in in the pregnancy are actually related to gestational hypertension and preeclampsia and eclampsia and preeclampsia and eclampsia there’s like a vascular damage endothelial damage, and this damage will we’ve cause different pathologies. Blindness in the preeclampsia and eclampsia is rare, but it happens and I think the the incidence rate is around one to 2% one to 3% of severe preeclampsia. Preeclampsia can result in blindness and the blindness and eclampsia. Preeclampsia can happen because of either damage that happened within the eye itself like the ocular structure some somewhere in the eye or damage happen or due to insult to the brain surprisingly. So if it’s if it’s caused by damage to the eye, it’s either caused for example, by bilateral retinal detachment, sometimes eclampsia of severe enough can cause serious detachment of the sample some some layers of the retina, and typically in a big lousier. It’s bilateral and it’s a dramatic and it can cause bilateral vision loss.
P: Let me stop you there for one second. So you’re saying high blood pressure causes enough pressure on the eye that it part of the eye is detaching, and it happens in both eyes. That’s how easily
Dr. Abusamra: it’s not exactly the the hypertension itself. It’s what results from the hypertension. For example, there’s there’s edema forming between the layers of the retina because of the severe hypertension and the vascular injury that can cause the Internet to detect. It’s called like serous retinal detachment and it’s a dramatic in preeclampsia, and usually multiple of the eyes
P: do we think that happens in some people because of the specific architecture of veins in their eye?
Dr. Abusamra: we don’t know the exact mechanism is not completed and patients get affected is not clear either, but this can happen. But they will think about it that the treatment is conservative management and once the reason for the detachment stops because I’ve been controlling the blood pressure. It resolves. Nowadays there’s there’s more focus to one or the other cause of blindness and the people I’m seeing eclampsia, which is actually the brain. So there’s something called cortical blindness which means that the patient will develop blindness without any issues with the structure of the eye itself. So if you examine the eye, it’s fine. There’s nothing to suggest nothing to explain why the patient was visual, right? However, it’s closed because of the damage or like an insult to the part of the brain that is responsible about interpreting vision, which is usually which is called the occipital cortex. So this type of disorder the cortical blindness is usually a part of a syndrome called PRES. PRES is the posterior posterior reversible encephalopathy syndrome. And patients in such syndrome will be complaining of headaches, sometimes they’re confused seizure and blindness. This is because of the severe hypertension will cause damage to the autoregulation of the blood vessels inside the brain. And the most common area that’s affected in such cases is the occipital lobe and the parietal lobe. occipital lobe is the is the part of the brain that controls vision. So that’s why patient might lose vision because of preeclampsia
P: what I’m focused on in that description is I thought you said reversible.
Dr. Abusamra: Yes. First of all, yeah,
P: so even though it’s we’re describing it as damage it we it can be fixed.
Dr. Abusamra: Yeah. And so yeah, it’s, it’s more of a like a temporary damage. That would be because of the severe hypertension and the DIS regulation of the blood supply to that area of the brain. There’ll be a temporary, dysfunctional in that area of the brain that controls the division, and that’s why a patient might suddenly become blind
D: at that point to have severe preeclampsia.
P: I had like I’m covered with goosebumps. Oh my god. Yeah, just it seems like it came on so fast.
D: It did. I mean, I it’s hard to know what the different markers were. I never asked like Well, what was my blood pressure, you know, a day ago, but clearly they weren’t worried about it. Right. And you know, the, like I said about the the formula like I’ve been so active and healthy and like everything had been great or whatever. Not everything was great. I was kind of depressed and my dad had died and all that but physically, I think I I presented healthy and but then there I was still at six centimeters with the baby and occipital, posterior and I was blind. And it was terrifying. It was terrifying for me. It was more terrifying for my husband who was watching and I think started to be afraid that I might die.
P: Yeah,
D: and nobody was paying attention to him.
P: has everyone said it’s preeclampsia?
D: I mean, once they took the readings, I mean, I think they had to check my blood pressure right away and they got the whatever they’ve been they put the band on for the baby’s heart rate. And probably I’m not probably getting all the details right because I was blind and I was kind of out of my head. So what they do right away is they give you something called magnesium sulfate, which basically kind of stabilizes you. There was no way I was going to be able to give a vaginal birth in that state
P: yeah
D:, I was blind. I was kind of out of my mind. The baby was stuck. And so they gave me this mag sulfate, which made me completely loopy. I had no idea where I was and this was the thing was really scary for Tim. I had no idea that I was even pregnant and in labor anymore. So I was like hallucinating and calling out things like what’s going on and why does it hurt like?
P: So at some point, obviously they put her on magnesium sulfate. She said she didn’t know she was pregnant or why she was in the hospital. And I’m wondering why magnesium sulfate has that consequence or
Dr. Abusamra: I’m not sure if it’s actually due to the magnesium sulfate. Now you’re talking about magnesium because I know that magnesium they use it in pregnancy and patients who have preeclampsia or eclampsia to treat the hypertension and return seizures. But maybe she was confused because I’m not sure what was the reason for her vision loss. But if you if you should see if she’s saying that she was confused at that time, that she actually developed PRES, which is the posterior reversible encephalopathy syndrome, where patients actually confused by the hospital like they disoriented to time to place they don’t know what’s going on with them. So it’s gonna be this is part of her hypertensive emergency that happened in the time of preeclampsia rather than the magnesium is the magnesium should be like a treatment for your condition not causing her to be confused.
D: So they said we need to do an emergency C section. She has preeclampsia. We need to get the baby delivered. But it was I don’t know like Saturday night in a small hospital in Keene New Hampshire. And it took a while to like get the anesthesiologist It was like he said it was two hours of waiting.
P: wow…Oh my god
D: with me in that state. I mean maybe it wasn’t quite that long. But with me in that state not even knowing I was pregnant, being blind and going from natural birth goals in the walk in like the tub to blind severe preeclampsia and hallucinating so at that point. I really don’t remember anything. He remembers a lot more than I do. When they did this. Like no one was like, we’re going to do a C section. This is what’s going to happen like it was just full on emergency mode.
P: Yeah, yeah.
D: No one talked us through it. Even if I had been able to understand certainly no one talked him through it. And I had never read the chapter on C sections in the birthing book, because that wasn’t gonna happen to me. I was a yoga teacher and I was super healthy and I exercised and took my vitamins and like, did my Hypno birthing exercises. So who knows if that would have made any difference but that was part of just my unpreparedness I want to say right now on this podcast like every woman should read the chapter, just read that chapter just understand that sometimes there are situations where this is a necessary outcome. And like you should understand what it is and also maybe what your options are for that kind of a delivery. So I don’t think Tim was even allowed in the room. Maybe you know, I can’t you know, there’s certain things that are hazy, but eventually our baby was our baby Ava was delivered. And I couldn’t see her. But because I was blind still but I remember this is like such a powerful physical memory was like they took her and they held her up to my face, and I could smell her and then they whisked her away to have the you know, things sectioned out. And that was another real grief because we had had this plan of skin to skin afterwards and you lay the baby on the chest and like none of those things happened.
P: Yeah, yeah.
D: And for a long time I worried and I I was so sad that I failed my my baby because she didn’t get that. In fact, my mom had even given me a book on how important skin to skin was. It was some beautiful book of pictures and it was like showing that that sacred time after the birth is very quiet and it was like, that didn’t happen for us, you know?
P: Yeah,
D: but here’s the thing. Our baby was so healthy. She was a eight pounds, 10 ounces. And like, you know, she’d been in there, you know, a long past 40 weeks and do this big, round cheeks. She nursed immediately with no trouble ever latching no trouble ever with nursing. And so then by the next day, so we spent like a good three days in the hospital, you know, recovering and everything. My vision did slowly return. So that was obviously a great relief and blessing.
P: While you’re waiting for that to happen. Have they told you usually people get their vision back or….
D: I don’t really remember that interim time. The timeline between when she was delivered when they brought her to me like all of that like I couldn’t see I think I was just I mean also they gave me I went under for I was fully sedated for the action. Yeah. Which I think I think it’s better to just have local and not have general anaesthetic but
P: my understanding is that is that it’s much faster acting to get general so yeah, when it becomes an emergency. That’s why they flip the script and make it Yeah,
D: yeah. So you know, there’s so much of it, that’s just it’s just hazy. They’re these sort of parts of the memory that burn really bright like the baby being like, I could smell that her and then I could hear her crying, which is obviously good noise and but then kind of fast forward to being in our hospital room and there’s baby Ava, and she had a full head of dark hair that kind of stuck with red temps that kind of stuck up. She was totally adorable in a way that like a lot of newborns are and she was nursing and healthy and had all the Apgar you know was a champ and she would like lay on Tim’s on like within the first day lay on his chest and she could kind of frog kick, like up it. I mean, that was amazing. And I realized pretty quickly, like whatever trauma that I’ve been through and that we’ve been all been through together. Like this baby was thriving. And I feel like as I had to process what happened over the next weeks and months and even years I held on to I kept my baby alive and strong. And she is okay. And that’s the most important thing. It’s not whether I had that ecstatic, orgasmic waterbirth in my living room, naturally like you know, be a birth goddess. That’s beautiful if another woman can have it and and I had to let go of that and then instead look at my real life baby who was just amazing.
P: That is amazing. And it sounds like your symptoms resolved slowly. While you were in the hospital. By the time they release you was she was your blood pressure normal?
D: Yeah, they kept me on the mag sulfate and they had to get it down to a certain time before they wouldn’t really say one other thing happened that was pretty scary. Was that by the next like by the next day, by the time my vision came back. At some point in the interim after the birth I developed a Bell’s palsy in my face so I had like a whole drooping side of the face. Scary. They were like they didn’t know if I’d had a stroke. Yeah, they didn’t know why they didn’t know if it would resolve.
P: Bell’s Palsy is a facial nerve neuropathy. That’s a rare disorder, but apparently occurs at higher frequencies in pregnancy. Almost 30% of cases are associated with preeclampsia or gestational hypertension. In fact, pregnant women are three times more likely to experience Bell’s palsy than non pregnant women. With a predominance in the third trimester. Several theories exist as to why there’s an increased incidence of Bell’s Palsy and pregnancy. And those include the following increased total body water leading to swelling and our compression of the facial nerve. weakened immune system especially in the third trimester, which can lead the reactivation of the herpes simplex virus. Increased blood clotting factors and elevated levels of female hormones estrogen and progesterone.
D: actually there’s a writer Sarah Ruhl are you he said price range she just she had a Bell’s Palsy. After twins and mine did was like over the course of the three plus days, but that was another sense of like, my body has been through some really extraordinary like that and that sense of like am I gonna be back to normal, whatever normal is.
P: Yeah, that seems terrifying. And another thing I’m interested in is like you my first pregnancy. Delivery involves a lot of trauma and we have a second child. Yes, and how to walk into that is different for everyone. So, so share with that was like how do we Why don’t we have a second one?
D: I know. I know. I mean, I guess the reason like you think why would you ever want to do I mean I started research include camp clam Sia, I went to see how often it was that you it’s actually more common in first pregnancies. And like I think I read the statistic around repeat preeclampsia. I’m not gonna able to quote it now and maybe it’s different.
P: The risk of developing preeclampsia in a second pregnancy if you had it in the first depends on when you had it in the prior pregnancy, how severe it was additional risk factors that you might have to just give a sense of the numbers and article and British Medical Journal using a giant sample found that the risk of preeclampsia in any pregnancy was 3%. The risk was 4.1% in the first pregnancy and 1.7 and later pregnancies during the second pregnancy. The risk was 14.7% for women who had developed preeclampsia, and then first pregnancy and 1.1% for those who had not
D; when I did get pregnant the second time and it was like another sort of accident. Ava was I think around 13 months like my kids are less than two years apart. So she was maybe yeah, 14 months when I got pregnant. I was still not menstruating like I was nursing a lot I think I thought it was going to be really hard to get pregnant because I wasn’t it was so there I was pregnant again. And I was like yeah, I’m gonna have a VBAC. You know, like redemption story, and actually a nurse a visiting nurse who’d come to look at my C section scar. And we haven’t even talked about like the C section recovery, which was like really long and arduous but she was like, Yeah, you can always have a VBAC. She kind of said it offhanded and I felt like that was such a, you know, a lovely seed to plant but I the local hospital, like they wouldn’t see me there. I was considered a high risk pregnancy. So the only prenatal care and like the only place that would let me deliver was at a hospital over an hour or like an hour and 15 away. So that’s where I had to go because they specialized in high risk. Pregnancy.
P: If you’re not at high risk to develop preeclampsia, what what are we worried about? I mean, maybe I was at higher risk.
D: That’s a good point.
P: I’m not I’m not contesting I’m just asking.
D: No, I think also the fact that I wanted a VBAC.
P: Yeah,
D: I think it’s I’ve been willing to have a planned C section. We could have done it at the local hospital. Yay. In a chilled out way. And let me tell you, I actually looking back I’m like, That actually sounds pretty relaxed ish. Maybe I should have done that. But I really wanted to try for that feedback. And so I needed to go through these people, you know, the providers who were kind of specialized because I think I think it was more about the the I think the risk of of rupture during you know, that’s what they’re worried about,
P: especially if it’s not if it’s less than two years apart, right?
D:Yes, exactly. So they’re, they’re all these things. It wasn’t just a was a VBAC. It was said maybe the history of preeclampsia but then it was also the close together and
P: was your first C section. Is it horizontal? Is that it’s horizontal?
D: Yeah. But, you know, I’ve sort of learned some things about C sections. Definitely the ones that are like fast and urgent or refer surgery my body, right. So for Carmen my second, it was also an August I did certain things different during that pregnancy. They didn’t want to let me go beyond 40 weeks for whatever reasons it was about the chances of preeclampsia start increasing after that 14 week mark. And I did a lot of different things like acupuncture and rosemary Evening Primrose oils and like, all the different things herbs to try to get things ready. But Carmen came right on her due day and I think I had a I had like the checkup prenatal checkup like right around that time. I think they might have done like they swept the membrane, that membranes and then I basically like went into labor. So I didn’t need the kind of induction that I did with the first baby. But I actually had an amazing I did a different Hypno birthing class with a different teacher who knew the full history of trauma. I also had a therapist who I had done a really cool technique on trauma processing called EMDR. Without that, I don’t think I would have been prepared to go into labor again, given how scary it was. So I you know, it was a more I don’t know, like maybe a more normal progression, things went faster. When you try for a VBAC. You have to wear the belt the entire time. So you are being monitored. There’s a lot of precautions. And basically, I I got to a certain point it kind of stalled. Carmen was in that same position, that occipital posterior and later a midwife would say, yeah, there’s probably something about your pelvic geometry. That is why your babies are in that position. And I didn’t even know that was a thing, but there you go. That’s nothing I could control.
P: Yeah.
D: But you know, I was like, probably, I don’t know, like eight centimeters and I was really tired. And then I was like, I want an epidural. My fears around the same interventions were totally gone in the same way because I saw what had happened before. So I kind of went to sleep because I was so so tired. And during that time, I basically fully dilated and started feeling the need to push which I’ve never gotten to the first time. So I kind of woke up out of that sleep and I was like I need to push I need to push and it was exciting. And then like it was like I’m doing it this time like this, you know, I was ready. I’m gonna like push this baby out. Like I Hypno birthing like everything. And then you know, I had this big monitor on and the baby’s heart rate went way down to like 30 or something and it stayed down and all the alarms and buzzes are going off.
And then it goes way up, and it starts doing tech cardio doing like up and down, up and down, up and down. And they called in the big guns. And it was like, something’s not right and when you’re having a VBAC and something like that happens, they don’t give you another chance. I was like, I’m like, Come on, I’m ready to push like I want to do this and they’re like, they’re afraid of a uterine rupture and that’s why the baby’s not okay. And at that point, they rushed me like I was naked on the bed. They got me on a gurney and they ran me down the hall naked to the O R. And they’re like, We need to get this baby out now. And I was I was like, no, no, please let me try like I want to push her out. And they kind of they checked me one more time and there was like a tiny lip of cervix which hadn’t like fully dilated, and they’re like, it’s gonna be too long. Like it’s gonna take too long for and the baby’s in distress, and we can’t risk it.
And that was that and they same thing they put me under Tim wasn’t allowed in. It was a very fast, very urgent, very scary emergency C section. And I had a great doula at the time. In fact, it was the same woman who had been a nurse who had said you could always have a VBAC. I’d asked her to be my doula. And she was like they were outside. of the window. And I feel like they kind of put me under still like, protesting like, let me keep trying. And my Doula was like, I saw your C section. It was really rough. Like there was a lot of blood, you bled a lot. And here’s the thing that happened, which again, didn’t know could happen. The surgeon cut my baby on the face with a scalpel.
P: Wow,
D: she was faced up again. So Carmen was born with a cut on her cheek. And the first pretty much the first thing that needed to happen to her once she cleaned up and everything but before she was given to me to nurse in the recovery room was she had to go to the plastic surgeon and she had like four tiny stitches on her face.
P: Wow. I have never heard of that. wow.
D: I was me when I finally heard about that. I was really angry. It was like, what was that doctor doing? You know? Anyway, I actually asked like in my six week chair, I was like, I want to talk to that doctor. I want to ask her what was what that was like, what happened? And that I never got the opportunity to do that.
P: But now do we think it was just a frantic rush to get the baby out?
D: Yeah. I mean, who knows what was happening? how long she’d been on for where she’d been on call for whatever. It was late. It was 1040 1035 at night. You know, I don’t I don’t know. I mean, people are human. There’s error in anything ADA. But that’s a pretty big errors to cut a newborn baby when you’re delivering a C section. And yeah, I mean, when we talk about birth trauma for our babies, you know that to come into the world that way for sure. So I I made sure like after we got home and everything I got like cranial sacral treatment for Carmen. She then she went on to have like, extreme colic like she would scream and scream for hours and I always felt like some of that was connected to like a really traumatic birth.
P: Colic sounds unbelievably hard, and I think it’s hard for people to understand just how difficult it is to live with a colicky baby unless they can witness it.
D: Oh my gosh, yes. She used to come down outside. And it luckily she was born in August. So it was like summer into fall that this was happening. I mean, it went on for like I want to say like for at least four to six months, like Oh, four months like I would walk around the neighborhood and sometimes I’d be walking her and she’d be screaming Unknown Speaker 0:02
meaning and I’d be like wondering if the neighbors were going to call like Child Protective Services. And I would be like, I’m trying to comfort my baby and I was totally powerless. Eventually she fall asleep and then I try to transfer her really carefully to like the little tick tock swing from my like baby carrier, and then maybe she would like sleep for 20 minutes and then she I mean, it was that was its own thing. You know, now she’s a fierce and incredibly healthy 14 year old varsity ice hockey player. Like she’s a very fiery Leo. You know, I think sometimes I’m like, Oh, that was just kind of her fire that we were. We were seeing that was she was expressing in that in that kind of first first few months of her life. I mean, somehow we made it through but I will say my recovery from that C section. I think if you have a planned second C section, and they kind of carefully go through the same star, like I almost have like two stars, that kind of cross. It was
P: oh wow.
D: Yeah, I mean, I’ve also had like a pelvic chronic pelvic pain condition which I had had before getting pregnant the first time that kind of came back, which I think was connected to the surgeries and trying to heal and all that scar tissue there. So and you know, so that’s when we started like, did you want a big family? You know, I knew that too. That was all my body could take. Yeah, yeah. And there was a lot of grief there. My sister just had her third baby a few months ago, and I really, you know, I felt the heartache. I mean, that’s over for me. I’m in my late 40s. I’ve two beautiful teenagers. I’m really grateful for the family I have but there’s always that sense of oh, what is or you know, it just it wasn’t my karma not for this life.
P: Yeah, it is. It is a hard thing to let go of, and we were in the same boat or we wanted a big family and it was too because of all these physical things that happened. So it is it is hard. To hard but makes sense to hold both like the gratefulness for what you have some sense of loss
D;loss, I think the loss is real and I that’s really why I’m grateful to you for having this podcast and holding the space for women mothers, I don’t know do you have dads on here too or is it just women?
P: So it’s funny I have it is just within and I tried to get most of the experts to be women because it’s yeah, I want it to be kind of women’s voices. But I was suggesting to my husband that maybe I would interview him about our birth story and he was like, Absolutely not. 0% chance.
D: That’s what my husband works. I mean, he the first birth he describes as hands down the most terrifying experience of his life.
P: Yeah,
D: I mean, he no one was telling him anything. He fully thought that I was gonna die. Maybe our baby was gonna die and he was just gonna watch it toddler Don’t be by myself. Waiting for tins are watching and I didn’t know what it was but it was the episode daughter those until April. In literally she dies.
P: Yeah. Yeah.
D: It is one of the most riveting fighting scenes like a television show. Talk about pts. Like I really did some trauma because it was so activated was like I felt and I think I understood like the day if it had been 100 years ago for me, kind of in 2005 that had been 95 There was no mag sulfate yeah and been in a hospital that would have happened like they saved my life in a way that seemed that helped me put aside my what ifs. I had a good friend at the time who had a C section and went on to have a very empowering VBAC and wrote about it and I felt a lot of jealousy and like, sense of failure. But I also just felt watching the worst case scenario play out on Downton Abbey. That actually helped me to just feel odd what I’d been through survived and like gratitude for the medical care that saved my life and like gratitude that I have these had these like strong, healthy, thriving babies, you know, because like, Isn’t that the most important part?
P: Yes, yeah. easy to lose track in the 10 months of getting there, but that is the ending we’re all looking for. Yeah, also, it was really interesting for you to watch a thing that you were kind of not present for right so now you can see everything your or some version.
D: Find and selfie and various and hallucinating so it was with all my faculties observing. It was really shocking. Yeah, that was really interesting. And so here’s like, the final thing is that I did get pregnant again
P: Wow.
D: Accidentally flare up of my chronic pelvic pain could come back and it was really ideon for years, I guess, since Carmen’s birth. That was our birth control. And I became convinced me to do everything to relieve where I was with this plane failure, which was really scary and I got the idea. And Tim scheduled a vasectomy lesson that was like the best and most compassionate thing that a man could do, especially to a woman who’s been through the kind of pelvic traumas that I have, but there was a window of time between the IUD coming out and we use some condoms. I don’t know. It has easy for me to get pregnant. I thought it’d be really hard to get pregnant at age 40.
P: Yeah,
D: it was not. And I got pregnant again. And we I had to make that decision. But it was an agonizing I understood that I would have needed a third C section. Like no one there was no not going to be a VBAC. I talked to the doctor about it, a third C section through that scar tissue which had already was in in rough shape, and hit I was already trying to treat the scar tissue to try to help with the pelvic pain. And I just knew I had like a very deep level and I talked with my doctor that like my body couldn’t really go through that or maybe it could but there was going to be a real cost in the long term for my health. And that was the decision I made and I was able to do like a medical, a chemical abortion like at home where I took the two pills and it was like just induced a miscarriage, and it was much less traumatic. than that first experience. When I was a teenager, I knew it was the right thing. And never looked back. I was just very grateful that I had access to that kind of care and could make that decision with my health care provider. So yeah, but so a lot of what ifs you know, sometimes I have because that would have been I would have had a baby like in 2014. So I would have a eight year old now, you know, so there’s definitely that. I’ve had some moments of that. But when I come back and get grounded in my body, and I almost like visualize what what’s going on down and then the C section scar and like everything. I just just like that was my limit. That was my limit. Were those those two babies, those two pregnancies, and those two surge emergency surgeries and I knew I couldn’t have gone through it again.
P: Yeah, I mean that that sounds wildly reasonable, especially since now you look at the two kids you’re responsible for right to say this becomes a bigger a different decision. I think. I think it’s most common for people to have abortions if they already have kids.
D: Oh, really?
P: So I think yeah. Okay, to be more clear about the abortion statistic according to the Guttmacher Institute, a research organization that focuses on reproductive health policy 59% of abortions are obtained by women with children.
So I think many people are making that calculus, right. What what’s cost and what can I do and now it’s not just me and it’s not just my partner. It’s yeah, it’s this family that we’ve already created.
D: Totally. And I mean, let me tell you, I don’t know what your teenage years are like, but like, we’ve gone through some intense stuff, past few years. And it’s been, I mean, at times, it’s brought me to my knees again and the ways that
P: surrender Yes, right.
D: So yeah, I’m not trying to say like people have more I mean, I think whatever you given what you can handle maybe but like two was what I could handle, you know?
P: Yeah, yeah. Yeah. Yeah. Well, that’s an amazing story and I am grateful for your good ending there.
D: Okay. Thank you. This was really cool. I like how you kind of, we kind of made a full circle.
P: Yeah. Thanks so much for coming on. Thanks so much today and for sharing her story. We didn’t get to talk too much about her writing, but I’ll link to her website in the show notes at war stories from the wound.com and you can check out our work. Thanks also to Dr. Alessandra, are insights about preeclampsia and blindness. Anyone listening to this story can relate to the fact that pregnancy and birth are complicated processes that really require flexibility and more grit than you can imagine. So many things happened in Diana’s two pregnancies and we only focused on the most dramatic aspects. We didn’t spend one minute talking about recovery from the C sections, and how challenging it must have been to have these difficult births close together in a period of intense childbearing. Her resilience and her partner’s resilience are really are really just inspiring. Thanks for listening. We’ll be back next week with another amazing story.
Transcribed by https://otter.ai
Episode 62: Suddenly Blindness–a Run in with Preeclampsia: Diana’s Story, Part I
Episode 62SN: Suddenly Blindness–a Run in with Preeclampsia: Diana’s Story, Part I
Today’s guest grew up with a mother who is something of an earth goddess, meaning that she was involved in a movement toward empowered birthing long before it’s a main cultural current. So the seeds of an idea of what a birth should look like were planted early in my guests life. In the course of her first delivery, preeclampsia fell on her out of a clear blue pregnancy–one that was normal and healthy up to that point. This condition can come with insults to any number of organs, and in her case it dramatically affected her vision. She was struck by blindness. Her story of coming to terms with the differences between her image of this process and the actual process is inspiring and so too was the way she and her husband managed the large number of obstacles they met along the way to creating their family. What follows is part one of her story. In part two, which will be released next Friday, the ninth we’re joined by a neuro ophthalmologist who explains what’s going on physically when preeclampsia includes blindness.
To find Diana’s writing, click here
Prodromal labor
https://www.healthline.com/health/pregnancy/prodromal-labor#seek-help
https://www.webmd.com/baby/prodromal-labor-overview
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. Today’s guest grew up with a mother who is something of an earth goddess, meaning that she was involved in a movement toward empowered birthing long before it’s a main cultural current. So the seeds of an idea of what a birth should look like were planted early in my guests life. In the course of her first delivery, preeclampsia fell on her out of a clear blue pregnancy–one that was normal and healthy up to that point. This condition can come with insults to any number of organs, and in her case it dramatically affected her vision. She was struck by blindness. Her story of coming to terms with the differences between her image of this process and the actual process is inspiring and so too was the way she and her husband managed the large number of obstacles they met along the way to creating their family. What follows is part one of her story. In part two, which will be released next Friday, the ninth we’re joined by a neuro ophthalmologist who explains what’s going on physically when preeclampsia includes blindness.
Let’s get to the story.
P: Hi, thanks so much for coming on the show. Can you introduce yourself and tell us where you’re from?
Diana: I am Diana Whitney, and I live in Brattleboro, Vermont.
P: Oh wow. That’s cool. How far are you from a place I would know how far are you from the Capitol?
D: That’s a good question. We’re at the very southern border of Vermont. So like the little stuff called the banana belt for people who go up to the mountains.
P: Oh, nice.
D: Three hours. from Burlington.
P: Oh, that sounds lovely. We’re here to talk about family. So let’s talk about your family. Did you grow up with siblings?
D: I did. I’m the oldest of four and my mom was sort of an earth mother type She was tall and radio with long flowing red hair. A hippie if you will. She got married barefoot in 1969 went to Woodstock. And my parents lived in England in a cottage for a while I was born there. My mom taught childbirth classes when I was little Yeah. So she actually studied with she like hit singer who was sort of a pioneering natural childbirth teacher from when my mom lived in England. And Sheila and her books and her natural childbirth theories were really influential for my mom. we lived in Washington DC when I was little and in the evenings these huge pregnant ladies would come into our house you know, so this was in like, the 70s and early 80s. And I remember kind of being on the stairs looking through the banister. And there is you know, my mom resplendent and they were all sitting on pillows in the living room and they were learning about about natural childbirth and Lamaze breathing. So I kind of give this because I like to say that important to my own birth story was was like a very idealistic vision of childbirth that I think was planted in me really young. And then the other thing that was really influential is that when I was 10 years old, so I was the oldest. My mom was pregnant with my sister. And my sister was accidentally born at home and in a in a wilderness cabin in northern Maine on the Canadian border.
P: Wow.
D: Yeah, and it gets better by by candlelight during a northeaster when the power went out.
P: I was just gonna say delivered by an elk?.
D: I mean, you know, my grandfather was there who’s MD But he was a psychiatrist so you know whether he’d ever delivered a baby but my mom as a former birthing instructor, and someone who had already had three babies, basically they they knew they couldn’t make it. The hospital was like over an hour and a half away and given the storm, they knew they couldn’t make it without having the baby in the car. So
P: Wow.
D: Yeah. So it wasn’t a planned homework the way you hear about it now where if they’re siblings, they know what is up so we were upstairs and I remember listening and being scared and kind of falling asleep and anyways and then meeting my newborn baby sister by candlelight, just after midnight on August 9, and it was incredibly beautiful and miraculous and romantic. And I think that was kind of the origin of my very romantic vision of childbirth.
P: I was gonna say it’s a double edged sword to have a mother who’s like an icon. Yeah, I mean, it’s amazing to have those experiences at the same time. It’s a pretty high bar.
D: It was and I didn’t even understand it, you know, because then life went on, and my mom didn’t think about herself in that way. But I think it was being able to give birth like that is a kind of superpower right? I think a lot of women could I don’t even what I’ve been through now like that, to me. It sounds really terrifying. But But she did it. She was amazing. And that some of the photos we have of like right after birth are holding the baby. It’s, you know, with my dad there. It’s just incredible.
P: That sounds amazing. And I’m guessing coming from that context. Also, you imagined you’d have a family.
D: I did… we were really close family growing up, you know, so it was me and two brothers, and then my little sister, you know, and so I babysat and kind of Yeah, just always thought it’d be something that I would do. And in in college, I remember saying, Well, I’m going to have three kids. That’s the perfect number. Four is too many, too. They just fight with each other out and I had all of these, you know, the way you do when you’re like, 20 that you think you have the world figured out, but as life would have it, you know, there was there was not it was not possible for me, given my physical limitations and what I went through with both of the births of my two daughters that I could have had a third.
P: I also said six and we have to so I hear Yeah, that’s a common you know, who doesn’t want camp at their house all the time?
D: Did you come from a big family?
P: I’m the third of four.
D: :Okay,
P: and we’re you know, three of us are really tight together and my little sister’s eight years below me, she’s the best one by far. So I think what would happen if we continue the line? So I’m sympathetic to this. So you you’re walking into birth with this very idealized and beautiful oily so before you got pregnant the first time was it easy to get pregnant?
D: Yeah, I mean, let’s be honest. Yeah, I I was really blessed with fertility. Actually got pregnant accidentally in college with my boyfriend who was very serious with and you know, had to make the hard but necessary decision I was 19 to terminate and think I learned then how easy it was for me to get pregnant. And that was a trauma that I had to heal from. And then when I did I got married. We don’t want to stop here for a second.
P: Do you want to walk fast by that one?
D: No, I can talk about I was sort of like, oh, I don’t know who your audience is. And I don’t want it like if there’s like anti choice people who are gonna be like, pissed about that. You know, I think as long as we talk about respectfully, it is right or no, and I actually I just testified in front of the Vermont House of Representatives about it because they’re voting on a reproductive rights bill. So it’s a story that’s very open that I’ve written about. I was really lucky because I actually had a really wonderful, supportive, loving boyfriend, who was devastated and scared and looking out for me, and we’d made a dumb mistake. I was using a diaphragm and he’d come to visit me over the Christmas break. And I’d left it at school when there was a big snowstorm and it was like, Oh, should we drive and buy some condoms? Oh, we’ll be fine. It’s just once you know, it was that sort of invincibility syndrome. And it really was like, the one time and then I felt so stupid. And yet, I had people around me giving reassuring me that I was human. That it like not to blame myself. I told my parents I mean really had amazing parents. So I called them and told them and they were supportive, and they paid for it. I mean, all of these sort of shame pieces that the culture puts in that I could have experienced from my family. I didn’t. And then the health care that I got at the local hospital was amazing and very compassionate, which is really what every woman every person deserves, is to have like compassionate care as you’re trying to make a make a really painful choice or B goes through with, you know, a painful procedure. I went to a lot of therapy to help with it. I’m a writer. So I actually wrote a lot I wrote poems, I’ve written essays, and that sort of helped me move through. And I did sort of rituals on my own. I mean, there’s there’s a whole story about what happened because actually the college when I was looking for when we were looking for a pregnancy test to confirm the one we’ve taken at home, the college health center didn’t have any pregnancy tests, which come on
P: that’s bizarre
D:. I mean, that’s, yeah, like 5000 college students. So it was sort of a fluke. And they actually sent us to one of those crisis pregnancy centers, which was its own crazy experience in New Hampshire, where they tried to where they told me the due date of the baby and told me about prenatal vitamins. And so that was its own really weird thing. I just feel so lucky that I was. I had those supportive people around me. And I even like I told some of my friends, my closest friends. I was a varsity ski racer. I had to tell my coach, she was supportive. She told me to, you know, take the time I needed but she believed I could keep going with my season. So like, I was really privileged. I’m really lucky. And so I don’t feel like I carried around this burden of of trauma. You know, I think that said, I felt like I needed to be very respectful about around my fertility. So then when I got married in 2004, and it was only a few months after that we got pregnant and it we weren’t really trying. We weren’t being super careful. But we were, I don’t know doing some kind of loose rhythm method II thing, you know, I’m not, you know, having intercourse during the fertile times, but obviously it didn’t work. So I I got pregnant, not sort of trying hard. And I was I was 32 when my first baby was born.
P: Wait, so let’s talk about that pregnancy. Yeah, you get Pregnant Easily and then and then. Are you imagining that you’re going to be like floating on a cloud all nine months?
D: Yeah. Yeah. So I actually I had a very healthy pregnancy, like I really was, you know, I had the usual morning sickness, see nauseous stuff, but I stayed very active. You know, I was a ski racer and a lifelong athlete and I stayed active. I was a ski coach. I kept hiking and skiing and and I sort of jogged as long as I could, but then I, you know, I just I kept moving and kept doing yoga. I’m also a yoga teacher. And I really believed that those things that I was doing, were going to guarantee me that there was going to be an equation like, you eat healthy. You do all the exercises that are good for prenatal women. You read the books, you read the right books, and that will equal this natural birth. That you have dreamed of. And let me just tell you, like, that’s not true. I mean, I learned that birth is a mystery, and there are no guarantees and there’s no formula and that because this was something afterwards that I wrestled with, I blamed myself for so long. I went back over and over what if, what if I done this? You know, the books that I was reading during pregnancy? Some of them were she looked like the ones my mom had given me. Sheila kids singers guide to natural childbirth. Oh, I read ina may Gaskin spiritual midwifery and all about those women on the farm in Tennessee who have these natural blissful births. They may be even orgasmic during labor. And then I took hypnobirthing and I was in a class that I joined here in Brattleboro, Vermont called Conscious pregnancy, where we did art projects and visualizations, and it was very beautiful. It was very idealistic, and it frankly was total bullshit when what happened to me ended up happening. There was nothing nothing from that class that actually prepared me for the reality of what happened to my body.
P: Well, biology is messy, right? That’s like, that’s what we learn. I like the way you described the equation because I think that is exactly how most of us are thinking about it. I do a and b and I will get C and that’s how it works. And it may be that you have a better chance of getting C if you do a me but you still don’t know where are you as an individual. Why in that whole, the realm of possibility.
D: Right. And I think one of the big things that I think a wise midwife told me at some point was the experience of of motherhood is one of surrender. And that is you know, that may have that happens in your pregnancy. It happens during labor or it happens with your you’re trying to nurse your newborn or deal with colic or your toddler or your teenager like it’s gonna happen, it’s gonna bring you to your knees and you’re just gonna have to surrender and be it face that you’re out of control at some point. And I think for different people, different women, it happens at different stages. And I think, for me, my pregnancy really did was pretty damn great. And so I yeah, I think that’s why I was so blindsided. And that’s an interesting word because of what ended up happening. But there’s one other piece that was really important to what happened is that my baby was due I think her due date was like August 14, and in early July, my dad died suddenly of a heart attack. So this was my beloved father. My family very, very close. He was he was just turned 61 So I was actually at conscious pregnancy class in the evening like doing the painting exercise or the visualizing the green light, healing light or whatever it was, and the phone rang. They found me there and it was my I don’t know who calling from the hospital to tell us my dad was dead. So everything that happened in those last I think it was like five weeks so I was probably like 34 weeks, maybe, maybe maybe more 3435 weeks. But that last like month of my pregnancy was absolutely suffused with the experience of shock and grief. And there’s no science. There’s no obstetrician who can prove that there was a connection between my dad’s death and what happened in my labor, but I know I know and actually had one like one of the doctors who hadn’t attended my birth but who was like talking to me at one of my follow up appointments and I wanted I said, why why did this happen to me? And we talked about what happened with my dad and he he kind of said something like that, that we can’t draw an exact correlation. And there’s nothing about preeclampsia that. I mean, it’s a mystery to science. But he said but you know, inside of you that there is a connection.
P: Yeah, I’m so sorry about your dad. That does sound shocking. And it’s hard to imagine that something that’s that powerful wouldn’t have an effect somewhere
D: some effect, right. I looked for reasons for so long afterwards. And at this point, like, you know, almost 17 years it’s sort of just you know, come to an acceptance about that was my particular karma to have kind of birth.
P: I also think my birth was visited by many mysteries as well. And it ultimately it worked out and everyone was alive, all good, but that wasn’t obvious for many months that it would have been that way. But I think this search for a reason, at least in my case was even though I can accept, I can accept intellectually that I have no control. I think viscerally my attempt to try to get a story that makes sense about how this happened is some attempt to feel like oh, it would have been impossible to control it if I had known because real, like bodily acceptance of the fact that you have no control is a tricky thing to manage.
D: Absolutely. I mean, we do have aspects and that’s why we study the breathing and birthing positions. And there is an aspect right that we can bring our our awareness of our bodies into this experience, right? But then, like you said, there’s there’s a whole host of other factors and biology and so another thing that feels important to me when I talked about the conscious pregnancy and the hypnobirthing that I was taking, is the the sort of culture I was living with in here in Southern Vermont. In hippy crunchy I call it like more organic than thou the it has shifted. Now I feel like maybe I’m also just give less shits, because I’m like a woman in my late 40s But then in as a brand new pregnant. You know, I felt young and naive and starry eyed and I was a yoga teacher and I was into, you know, rituals and and natural, natural and the whole culture was so frankly so judging about any kind of intervention that a woman might have in her labor experience. So everything that I learned not just from reading Ina may Gaskin but from going to these classes or talking to Inishowen, I wanted to have a homework. I up until the point where my father died. I was planning a home birth with a tub in my living room for my first baby and I heard all these ecstatic stories of women who did that and that to me seemed like I mean, it sounds so ridiculous now, but it seemed to me like the crowning glory of like the divine feminine power is like to push out a baby through your vagina in a tub in your living room. And the exact opposite end up happening for me.
P: although I’m gonna stop you there for one second to say it’s, I think the first part of what you were saying still holds true.there is something divine and unbelievable in the act of, you know, birthing a baby carrying a baby all that stuff.
D: Yes.
P: Whether it gets you to the 11th level of heaven in a tub in your living room result is each person has experienced but so take us to the How do you know today’s the day like take us to the birth?
D: Yeah, well, I so I had decided after my dad died and the midwife sort of flaked out. She was like, Oh, I think I’m going to be traveling around your due day and here’s my backup midwife. And I at that point was like, I need to know who my people are, you know, my dad just died. So I switched to a birthing center at the local hospital which also had broken tabs. So that was important. But what happened was, my due date came in went. And I was huge. it was late August and it was like hot and sweaty. And then people kept calling on the phone to ask if the baby was there yet. You know my mother in law, my mother and I didn’t want to see anyone. I was so grumpy and I wasn’t sleeping much as at the end of pregnancy. You know, it’s really it was maybe a combination of discomfort and being enormous and hot. And maybe also really impatient for the baby. So I kept going and I was so had been basically warned not to do any sort of intervention, any kind of even mild induction you know, just wait natural, natural natural. And then we got to this point, probably like over a week past the due date, where I would I went into what felt like labor at night, and the contractions are pretty strong. Like coming like three minutes. Apart, not able to sleep, having to breathe and do all the stuff during them. And then when we were like okay in the morning, we’re gonna go to the birthing center and this is it and then during the day, it would just stop and this is what I mean by like nothing in my birthing classes prepared me because I did not know that that was a thing. And there is That’s true. It’s called prodromal labor, I guess. And that went on for almost five days.
P: oh Wow.
So prodromal labor is quote, real labor and that the contractions are real and very much like the contractions in active labor. But in this case, the contractions start and stop and they don’t cause changes in the cervix. In active labor. The contractions are opening the cervix. We don’t really know what causes prodromal labor and its arrival doesn’t necessarily mean that active labor is on the near horizon. It can come a month before the baby is born.
D: So during that time, I could barely eat and I wasn’t sleeping and I was getting weaker and weaker. And I was really scared and confused. You know and this is where the what ifs come in. Why didn’t she go to the hospital and maybe get an induction she’s 10 days pass or you know well, it was almost 42 weeks, but I was so frightened. And I’d had the like fear of God burned into me about Pitocin or whatever the like these dangerous things were that were going to result in an intervention and a C section and all these horrible outcomes. So I didn’t I didn’t. And then I actually was on the phone with a midwife who had taught me the Hypno birthing and she wasn’t my midwife.
And she said, I’m really getting scared for you, Diana. You’re not sleeping and you’re just at the beginning of this. You need to eat and sleep and gather your strength and like you should go to the hospital. And so I went and I think what they did was you know, they checked me out to see if I was dilated and maybe it was like one or two centimeters but like really not things had not really gotten going. So I think they gave me like they actually gave me a sleeping pills so I could sleep a little through the contractions and then they did an induction they did a something called cervadil which I didn’t even know was a thing. It’s you know, the little cert you know, put the stuff on your cervix. I kind of slept through it I think maybe and and now when I think back I’m like that if I had done that five days earlier, like who knows I was so exhausted by the time things really got going.
P: Yeah,
D: but that did get things going. So there we were, and we were in and out of the job. And to be honest, I don’t know how other women like I don’t know if you remember I my memories of that birth are very blurred. Maybe it was due to just the sleep deprivation for like the days leading up to it. Maybe it was just in the zone. But what happened was I had the baby was what they call op or sunnyside up occipital posterior, which was also not really a thing that I’d known about was that your baby could be in a position, which means you’re gonna have excruciating back labor and things aren’t gonna progress.
P: Yeah.
D: So I was like they said I was doing great and they kept checking me and I was like only at six centimeters you know? And they’re like your baby sunnyside up. You have to go try to shift her otherwise this isn’t going to progress. And I don’t know how many hours we’ve been at it. I mean, but basically this is the culmination of like a whole five day thing.
PI’m not sure what shift her means. What does that mean?
D: they were they told me to go out and stomp up and down the hall.
You know in my I was delirious to try to get the baby to roll or something. You know, I guess she wasn’t low enough yet that so her she wouldn’t be like face up.
P: These seem like crazy instructions for someone in your situation like they might as well have asked you to go jump rope.
D: Like exactly. I know but I was like okay, you know, because I remember they kept checking me like still only six centimeters like it was stalled stalled stalled. This is why it stalled because your baby’s in this position and the thing about back labor, which you know, I learned after this whole experience that this is very similar to what my mother had with me.
P: Oh, wow.
D: Like she never told me that after I gave birth and she said yeah, you were occipital posterior. You were sunnyside up. I had back labor. It was excruciating. That was the word she used.
And this is what goes unsaid between mothers and daughters because there’s me right in the candle light with the homebirth baby and reading the Sheila kids singer and like thinking my mom was this goddess and her first baby. I was a low forceps delivery in 1973 She says she knows that if she didn’t give in in England if she had given birth in like the US today I would have been a C section no question.
P: Yeah, yeah,
D: you know, anyways, you know, I came out with my head all squeezed from the forceps. Yeah. And she she tore like that she just ripped her whole perineum after that forceps delivery. I mean, she said it was excruciating. So I’m not. I kind of wish maybe you don’t you can’t tell a woman that ahead of time.
P: This is a good thing that I am trying to get to the heart of in kind of recasting the narrative of what pregnancy is, is like and includes for people who you know, for your your daughters or my daughters.
I want to inform without scaring you to say like this is a panoply of things that might happen or none of that happened but but just don’t be a you may have felt differently if you knew Oh, back labor is a thing. And it’s really challenging and like it’s supposed to suck like this much. Right,
D: right. And even I feel like that sort of glorification of natural birth which was in my community. For example, when my sister had her first baby. She was at a different kind of community in San Francisco, like a more urban one. And I don’t know, she just was like, oh, yeah, and then I got my epidural.
P: Yeah.
D: Like here that was considered failing. You know, going down this terrible slope of interventions, like, you know, they’re just so many choices that I felt like I wasn’t presented with maybe because of this idealization of a natural labor, which for all the things that were going on with my body, so the position my baby was in…. So so let’s go back to the chronology, they told me to go stomp down the hall, you know, and it’s late at night. I’ve been inactive laborers, you know, for at least 12 hours, maybe longer, but also I’d been in that prodromal labor for days of contractions that stop and start but literally very painful contractions. They just weren’t doing anything. And I’m stomping.
And like, half naked I mean, I must have been looked absolutely insane. And then I went blind. I couldn’t see
P: out in the hall while you’re stopping. Yeah.
D: And I started screaming. I can’t see anything I can’t see.
P: I’m going to stop the interview here. Midway through Diana’s story. At this point, she’s fully and completely left the realm of a delivery that bears any resemblance to her expectations. Preeclampsia affects five to 8% of pregnancies. And as it did in Diana’s case, it can come on suddenly. It’s hard to fully appreciate the extreme stress Diana and her husband felt when she lost her sight.
Many women seem to have encountered high blood pressure on the way to preeclampsia or other things in pregnancy report that having high blood pressure doesn’t really feel like anything. So even though it’s dangerous, it doesn’t feel scary in the same way that complete
so even though it’s dangerous, it doesn’t feel scary in the way that complete vision loss would. Even when the doctors told her she had severe preeclampsia, the uncertainty of how her case would develop loomed large: if she’d regain her sight, if the baby would be okay, if she would be okay were unknowns for long enough to leave a lasting impression. Pregnancy is often referred to as a stress test, and more often than not I’ve thought about this in the context of the physical challenges of pregnancy but Diana and her partner experience a whole other dimension. It’s an important story to hear both to recognize the amazing resilience and grit Diana displays, and to better manage our own expectations of all the things that pregnancy can contain.
Thanks for listening. We’ll be back next week with the conclusion of this story and commentary from a neuro opthalmologist.