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.