Episode 75: A Late Visit from a Preeclampsia Diagnosis: Joy’s Story, Part I
Episode 75 SN: A Late Visit from a Preeclampsia Diagnosis: Joy’s Story, Part I
Today’s guest walked into pregnancy carefully. She is a health journalist who had researched and reported on pregnancy issues and this work influenced her ideas about the kind of birth she wanted to have. Things began swimmingly, and it wasn’t until the third trimester when the first signs of what would become preeclampsia began to emerge, but nothing is diagnosed at this point. The birth was the beginning of a chaotic couple of days in the hospital. It’s not until after the birth that preeclampsia is caught and the turmoil of her experience really impressed upon her the challenges of navigating a complicated medical event. What follows is the first part of our conversation.
I also had the opportunity to interview two scientist physicians who have researched preeclampsia and have tended to women with the condition. We’ll hear more from these doctors in part 2 of the conversation.
Relationship between morning sickness and pregnancy viability
https://www.verywellfamily.com/does-no-morning-sickness-mean-miscarriage-2371250
https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2553283
https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2553283
Epidurals and lower blood pressure
https://pubmed.ncbi.nlm.nih.gov/23021700/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7276328/
Audio Transcript
Paulette: Hi, welcome to horror stories from the womb. I’m your host, Paulette Kamenecka. I’m a writer and an economist and a mother of two girls. Today’s guest walked into pregnancy carefully. She’s a health journalist who had researched and reported our pregnancy issues. This work influenced your ideas about the kind of birth she wanted to have. Things began swimmingly. And it wasn’t until the third trimester when the first signs of what would become preeclampsia began to emerge, but nothing is diagnosed at this point. The birth was the beginning of a chaotic couple of days in the hospital. And it’s not until after birth that preeclampsia has caught a turmoil of her experience really impressed upon her. The challenges of navigating a complicated medical event. What follows is the first part of our conversation. I also had the opportunity to interview two scientists/physicians, whose research papers yet attended one with a condition, both here wanting these doctors to have this conversation.
Let’s get to this inspiring story.
P: Hi, thanks so much for coming on the show. Can you introduce yourself and tell us where you’re from?
J : My name is Joy, and I live in Austin, Texas.
P Excellent, Thanks so much for coming. Joy. So here we are. We’re going to talk about the family that you feel that you have right now. And sometimes the family you have is a reflection of the family that you’re from. Let’s just talk briefly about the family that you have come from.Do you have siblings?
J: I have one younger brother. He’s six years younger than me and he lives in the northern suburbs of Austin and round.
P: Oh, nice to boost age. Yeah, we’re close by and did growing up with a sibling make you think I want kids or not really.
J: Being six years younger, there was enough of an age gap. You never really want to play together, that sort of thing. And then by the time I was in high school, I did my own thing.So no, I
wouldn’t say how did you know at some point that you want a family?
J: I met my husband after a few years that we were together. We talked about it a lot. But we were also very hesitant about the state of the world at the time, which now seems depressing.
P: Quaint?
J: Yeah, exactly. And I had a lot going on in my own personal life with my mother’s health, which definitely derailed me for a few years as well. And so yeah, it was it’s not the kind of decision that the two of us would ever make lightly. It’s something we’ve put a lot of just like any major decision,
P when you go to get pregnant is easy to get pregnant.
J: Yeah, it was pretty easy to get pregnant. I think it took like four or five months. Kind of trying, you know, but not like being very serious. didn’t need any help with it.
P: Okay, good. And what’s the first trimester like
J : the first trimester was really pretty easy. I did not have any morning sickness, which is sometimes can be a bad sign. Because it’s an indication of all like the hormones and all the things that are changing in the body.
P : So this is a good question. Does morning sickness have a deeper meaning? Does it mean that pregnancy is doing well or poorly? It looks like in general the answer to this is no. Lack of morning sickness doesn’t imply that pregnancy is on the wrong path. There was an article in 2016 in an important medical journal that found that for women who had one or two previous miscarriages, morning sickness was associated with reduced risk of pregnancy loss. But this finding is limited to people who have previously experienced miscarriage.
J And I really didn’t have too much of that. I don’t even remember being all that tired when that I hear no quite calm. So it really wasn’t that bad first trimester.
P Okay, good. Did you have I should have asked this before, but did you have a concept of what pregnancy would be like before you stepped into it?
J Yes, I have been a health reporter in New York City at that point for a long time. For a while I had worked in White Plains, New York, which is a suburban community north of New York, and it’s very wealthy. And really the health concerns there are dramatically different than the health concerns where I grew up in Corpus Christi. And I had met women who were debating things and looking at the science journals, and interventions in birth, and really, they really approached it from this very privileged standpoint of like there’s too many interventions in birth. And that kind of influence my view, by the time I got ready, I really was like, Oh, my gosh, the C section is that should not be happening to me and I tried to go for very, quote, natural childbirth as much as I could, you know, it’s about that was sort of the background approach.
P So does that mean you went to like midwifery instead of a traditional OB
J Yes, I went to my OB. When I got pregnant. She didn’t have privileges or whatever at a one hospital in Manhattan that had a birth center, which was at the time the sequence was about and so I switched to a mid wave clinic and have more midwives because they I had a birthing center at the hospital that I liked that it was within a hospital if anything went wrong. I was already there.
P Yeah. That seems like the right kind of insurance.
J: Yeah, exactly. Yeah. So we’re, we toured the birth center in those early days and yeah, and it seemed like a good setup.
P So does that mean that your your care is more kind of gentle and sporadic throughout your pregnancy?
J I wouldn’t say sporadic I think you have just as many appointments as you would. I mean, I don’t know for sure, as you would have been OB and you have those sonograms you know starting at the regular schedule, and you have a lot of visits. And so I think the I don’t know what the big difference would be there might have been less testing and you know, bloodwork, maybe I’m not sure, but I remember having that doing the glucose test, all that sort of stuff.
P Okay, so that sounds familiar. And maybe a birthing center that is situated inside a hospital is slightly different than a birthing center on its own, because it’s just
J: yeah,
P: by proximity and selection and all these other things. And so second trimester still doing well.
J : Yeah, doing pretty well. I remember we traveled to Costa Rica and it was a good trip. And yeah, second, second trimester. I think they’re, you know, looking back in hindsight, if there was a little bit of an indication the baby’s growth wasn’t like it’s starting to slow down near the end of the second trimester, the belly measurements, you know, towards towards that end of the second trimester. I remember seeing them like, okay, and I didn’t look super pregnant by the end of the second trimester. I remember people saying I looked less pregnant than I was. People don’t hold back with their opinions.
P: Yes, yeah. Pregnant women seem to be public property. I do remember having to like fend off paws that were coming my way. To touch the pregnant belly, which I don’t remember selling tickets. You are not in line. Don’t. Don’t touch me that way. So the baby’s baby going a little bit slower, but no one’s upset about that.
J: No,no, and I you know, I don’t even remember, I went through a process of looking exhaustively, looking through my medical records after the fact. And it’s hard to say if at the time I was really thinking about it, I definitely remember looking at the record. Oh, there might have been some signs here.
P Yeah, I mean, it’s interesting when you look after the facts, right that things look a little bit different, but we’ll get to that because I read your story in cosmopolitan, which is, I’m glad that it’s published because it is important and kind of shocking. As shocking as it was to experience it’s it is shocking to read.
J: Yeah.
P: So we’ll get we’ll get to that. So third trimester rolls around and what’s that like?
J That’s really hard, really hard. And I remember what to say around like week 33-34 My hands started. It was like a burning sensation. It started hurting, hurting to write which I was a writer and a reporter and you know, using my pen taking notes in a meeting or whatever, my hands would just start hurting and they were kind of bright red. They weren’t really swollen like with edema, but they hurt. And I started developing an upper gastric pain of pain on my right side up towards the top and I went to my midwife, I complained about it and in my chart, it said, you know, suggested ice packs for hands and she called the belly pain. The ligament pain like the
P: round ligament?
J: round ligament like yes, yeah, that was written in my chart. It was actually my liver but that was you know, was written in my chart. And then I also had a couple of times where I went in with high blood pressure. And I remember distinctly going in there once and the midwife you’d see different midwives each time, which I think was not a good thing that there were that was not consistent way of getting care, and they were also had way too many patients. I mean, the waiting room waiting was atrocious, sit out there for a really long time to see your midwife. Um, you know, in hindsight, it just was not a good experience.
But one of the times that I was having my blood pressure measured, it was high. She’s like she’s she Shepherd shuffled me over to a second room that was dark and heavy lay down on my side, I retook my measurement, and that’s what ended up in my chart. And at the time, I don’t know what was going through my mind. I knew I kind of you know, was vaguely aware of what preeclampsia was but I also had this attitude that that that wouldn’t happen to me. I don’t know why. But you know, that was really dangerous but she did. And that was probably week 36,37. When when stuff like that was happening, and I was definitely just miserable those last few weeks not feeling good. And I went all the way to 41st week.
P: Wow.
J: Yeah.
P: So So let’s talk a little bit about that third trimester no one’s running tests to check stuff.
J: No, no, I didn’t get any bloodwork done. And I you know, I’m really curious now, if that would have shown anything with the liver enzymes. Yeah, just the regular go in, take your blood pressure. Take your vitals, measure the belly. Again. The belly growth was a week or two behind what you would see normally.
P And are you worried or you’re you’re trusting entirely the midwives?
J I’m not worried. Yeah, I’m miserable. And I’m in because I did go and I told them, you know, I’m having these issues, and they said it was these other things. You know, I just was like, Okay, I guess, I guess this is how it’s supposed to be. I also had really bad insomnia, because I was so uncomfortable. And I just remember like, being up all night, like trying to find a comfortable position to lay in and just not getting any sleep and I thought, okay, I guess that’s normal too. You just it’s hard to know what’s normal and what’s not and tell you a full range of like Swelling is normal, your ankles swell, you know, that sort of stuff.
P It is it is interesting, and I’m completely and fervently of two minds about all this which is on the one hand, so little is known about pregnancy. And all these complications that you easily could be in that bin of nothing serious going on here. And preeclampsia it while it’s significant issue is not super common. It’s not like 30% of the people have preeclampsia; at the same time. We need to be screening everyone in the fall. It’s not serious then to make sure they’re in the right bit. Right.
J: Yeah, yeah. And you’re reminding me of an important thing that happened one way that my case was different, you know, they were doing the urine checks. Every time I go in my urine was always normal throughout the entire thing. My kidneys were always fine. I never had protein in my urine and but I did have elevated liver enzymes, quite high and right around around November after I gave birth about six or seven months after ACOG. The American College of Obstetrics and Gynecology changed their guidelines to say we should not rely solely on protein in the urine and high blood pressure. You should just be high blood pressure at that point you need to do the full battery of tests because protein can be some women go into this variant of the liver versus the kidney and that that was me and I think that might have been one of the ways I was felt they were thrown off by me.
P What year is this?
J : this is 2013
P: And how old are you?
J: I was 36 Mine delivered.
P: Okay, so the definition of preeclampsia has changed over time to become
J I haven’t Yes, I haven’t looked into it really since then. I got very involved with it. And three years after I gave birth in terms of I know I was on the Patient Advisory Council for the preeclampsia Foundation, wrote that article and since then, it may have changed. But I do remember that year they updated those guidelines because they knew they were missing. They knew they weren’t missing people by being that narrow.
P 12:47
Yeah, it continues to evolve that now for sure they say it does not require protein in the urine to be defined as preeclampsia. I brought this question of the definition of preeclampsia to two experts.
Today we’re lucky to have not one but two amazing scientist/ physicians who research issues around preeclampsia on the show. The first is Dr. Suzanne Oparil. Who if I introduce Dr. Oparil, with all the professional designations that follow her name, the society she’s a part of and the groundbreaking work she’s done. we’d be here all day. So I’m going to I’m going to summarize here. I’ll say that she’s a cardiologist at the University of Alabama Medical School of Birmingham, who was interested in the fundamental mechanisms of cardiovascular disease. She’s authored tons of work on preeclampsia, among other things, and is on the Medical Advisory Board of the preeclampsia Foundation. And we’ll talk about one of the groundbreaking clinical studies that she’s a part of a little bit later. And I also want to introduce Dr. Rachel Sinkey, who’s an Assistant Professor of Obstetrics and Gynaecology, in the Division of Maternal Fetal Medicine at the University of Alabama medical school, who has also authored just a zillion papers on hypertension in pregnancy and preeclampsia. Doctors this feels like a dream team. So thank you so much for spending some time with us this morning.
Dr. Oparil: You’re welcome. It’s an honor to work with Rachel who taught him 90% Of what I know about preeclampsia.
Dr. Sinkey: That’s so not true but it’s an honor to be on your show today with Dr. Oparil
P: Well we’re glad to have you both. We’re gonna start off with what I’m hoping is a softball. Can you tell us what is preeclampsia.
Dr. Oparil: go fot it.
Dr. Sinkey: Absolutely And since this is my bread and butter, we see this so often. It’s just so important to teach our trainees but basically it is either new onset hypertension in a patient who didn’t previously have hypertension, plus either protein in the patient’s urine or other signs of end organ damage. Or the patient has a history of hypertension, then it can be associated with worsening hypertension. Worsening proteinuria and potentially end organ damage.
P Okay, so it sounds like in that definition, you have essentially told us how it’s usually diagnosed. You’re looking for those markers.
Dr. Sinkey: Exactly.
P: Today, we’re here to talk about Joy’s experience. She had a new onset of high blood pressure and heightened liver enzymes. But wasn’t diagnosed as ill after delivery. So I’m guessing there’s something tricky about making a diagnosis of preeclampsia on someone is that consistent with your experience?
Dr. Sinkey: You’re exactly right all it and the thing is it’s very tricky is that if you are diagnosed before delivery of the infant, then you still have circulating hormones in your body even after delivery and for some women, yes, most women are delivered diagnosed prior to delivery. However, there are some women that aren’t diagnosed until after delivery. And so trying to explain to explain it to families is really challenging and it can it can be a tricky diagnosis.
P Do we know what causes preeclampsia?
Dr. Sinkey : We blame the placenta. We are still investigating the underlying causes and I think not having an exact clear understanding of the underlying pathophysiology of preeclampsia also may help to explain why we don’t have treatment yet. So I hope that over the coming decades as our huge appreciation and respect for our basic scientists, colleagues who study this on a daily basis, hopefully as we learn more about the underlying causes, we can also develop therapeutics to prevent it and anti trade.
Dr. Oparil: I would guess though there are going to be multiple underlying cause it’s not going to be one thing, one molecule probably.
P : Okay, so now you’re not feeling great. It seems like maybe it’s normal because everyone’s telling you it’s normal. That’s another thing that’s like a dissonance right where you’re like, Okay, so this terrible feeling is what everyone does, like, yeah, that doesn’t seem like the marketing I hear around pregnancy. And so what you’re imagining like a birth with an epidural or what’s your picture?
J : right, I would that’s what I was. That a was you know, just as few intervention as possible. If I could make it without it. I wasn’t opposed to an epidural but if I can make it without it, I wanted to try it. I come from this like stock of women. That so my grandparents my my grandmother was a twin and she was one of 13 siblings. My great grandmother had 13 children in a log cabin by herself. Yeah. And I had that. There was a newspaper article written about her. She was like so anachronistic. Even in the 60s, she wore a bonnet and had a log cabin and I had a newspaper clipping off her when the headline mentioned that their teen children in the Log cabin I was like give an event living can do it then you know I can do that sort of attitude. And you know, I did not inherit those genetics apparently. Yeah, I definitely changed my mind on the pain control pretty quickly.
P Well, it is an interesting thing. I remember being terrified of birth, like once I was seven months pregnant. Yeah, kind of that idea that this baby that you’re growing is gonna have to exit your body somehow. Yeah. And how’s that going to work?
J: Right.
P: And I too, took stock of like this has happened for eons. Yeah, we’ve been having giving birth in fields by themselves. But unlike you, I thought I’m not one of those women. Yeah, that’s in the field. That’s not me. But so I like your your spirit and your and the mindset that you’re going in with but at least it feels like empowering to think I can do this. My body can do this.
J Yeah. Yeah. But I, you know, if I could go back in time, I think I would have never seen a midwife I would have stayed with an OB. And yeah, I would have been more open minded to everything. I think my biggest lesson was like don’t have a birth plan. The baby has a birth plan, you know,
P : it’s hard not to get attached to some form of control, which I think is what that birth plan is because you’re walking into the unknown. So it makes sense to me that people would want a little something to cling to but But you’re right, that doesn’t always land.
J Right. Exactly
P: So now you how do you get past your due date? You just do. There’s nothing going on.
J: You know those days are a little hazy because I was definitely feeling really bad but I remember I made it to my final week appointment. And, and then yeah, a few days after that. I started having contractions. But yeah, those last few days are definitely blurry.
P : So so how do we get to the hospital? Does your water break or like what take us to the day?
J Yeah, I had two trips to the hospital. So the first was around. I had been laboring all day and calling into the clinic and reporting to them on timing and contractions. I had your back contractions I had a lot of pain in that in the back. Just I just know hammering is the way I refer to it. I remember sitting on the first of all, my husband kind of pressing on my back and I was just, you know, at that point, you’re starting to realize like this is this is just the beginning.
P You and You knew this was a contraction.
J: Yeah, yes. Because it was coming in. It was coming in, wakes up and it would go away and then it would come back. And we were timing them and I think they got to five minutes. Although I don’t remember that precisely. But we went in, I wanted to go in and it was like when in the morning went into the hospital went into the triage of labor and delivery and I was only dilated to one centimeter. And so they sent me home but I also have high blood pressure I had it’s like 145 over 90, and I had a racing heartbeat. And I remember the midwife it was a different one this time asking my husband like, Oh, does she have anxiety? Does she get anxious easily? And I think he said, You know, I think he was sort of like well, you know, I guess like he didn’t quite know how to answer that. What you think would have come up before I’m in triage. And so they sent me home at one inches dilated and say you know, you know, keep in touch and call us and I can’t remember exactly what the designation was to call back in. So we go home, and things continue like that for a while but I start feeling worse and worse. And again, it’s so hard to know like, is this labor or is this something else?
P: you feel worse means that you’re getting a headache now
J: I have I was kind of like a flu type feeling like a general just generalized fatigue and anxiety. My heart was elevated probably for a month really. But you know, this sense of like impending doom, which is my favorite experience and then at a certain point I call it and I think I felt lightheaded. And I called him to the midwife and I was like I don’t feel good. And so she said, Oh, you’re probably dehydrated. So Brendan my husband ran out and got some power rate. And then I drink that power away and I proceeded to vomit all over the kitchen. And as I’m throwing up, my water breaks.
P: Wow….no shade for your husband, but Powerade sounds vile.
J : I happen to like the red one. Reason Yeah, when it’s really cold, the red one kind of spot. I don’t drink it often. But you know, we were trying to I didn’t have much of an appetite and if she you know she wanted me to stay hydrated. So
P: okay absolved…sounds like he did the right thing
J: Yeah, yeah, exactly. Yeah, well, eventually, but it did get all over the kitchen. And yeah, and then the water breaking was like this. You know, just these two things. Two things happening physically at once was insane. And even then I have been learning a birth class. But sometimes when we get to the transition phase of labor, they grow up or they feel nauseated. And so I told Brendan I was like, I think this is normal, like you know, to be growing up and have your water break and things just feel like they’re accelerating. So at that point, my biggest concern is that I’m about to have a baby. And so we go into the I call the midwife and she says come in right away when I when I said that I’ve just been throwing up
P let me ask you a question this transition is like seven centimeters dilated right so yes yeah,
J but this one had been like 12 hours on a triage so I you know, I could
P: okay totally legit Yeah, okay.
J: Yeah. And it’s, it’s kind of you know, with the, for me, you know that’s a bad thing to be just just handle your decisions on how much the dilation is happening and keeping you at home as long as possible. In my situation where I’m already having all these vital sign issues and stuff, who cares when I’m dilated? I need to be in a hospital.
P: agreed
J: But that was missed. You know that that wasn’t caught and so ended up getting very sick at home. And I remember taking we’ll take a cab into the city and there’s a lot of traffic was lunchtime, just like driving around the west side of Manhattan feeling like shit covered in vomit at that point.
P: So, so how does this feels a little bit like a TV movie here?I know the cab drivers happy to take you or where you’re going to get back from the cab or
J: I don’t remember. I really don’t remember I remember like looking at all the like fancy shops in Midtown. And we’re just kind of crawling along. Yeah. And then I get to the hospital and the midwife meets us down in the lobby and she’s like Where were you? Really we were in traffic, you know, like, drive as fast as we can. And then she like escorted us up to triage.
P: Are you feeling scared now? Or what are we now we have anxiety? Yes, yeah, exactly. Right.
I’m feeling scared for you. And obviously I know how this turns out but you still worried about the high blood pressure and the fast heart rate and, and a fast heart rate. The thing that’s bad about that as opposed to high blood pressure is most people say you can’t feel high blood pressure necessarily. Right. But the fast heart rate is a freaky thing to feel.
J Yeah, it is. Yeah. And it’s and it feels exactly like anxiety. So yeah, and so there was this this, I was definitely anxious. And at that point, one weird thing that happened to me. And I don’t and I’ll never know if this was anxiety or if this was the high blood pressure or both. I started hearing like an ocean sound kind of a shot like that. He was holding shells up to my ear. And I went into some sort of other space at that point where I was listening to the sound. I was very calm. And I didn’t say anything to anybody, but like hearing the sound. I don’t think I was really aware of it. In that sense. Like I should say, thing was just like intense. I think it was just the intensity, everything. And in triage, I get a cervical exam and meconium spills out, which is the baby’s first bowel movement. And if it happens in utero, it’s usually a sign of distress, and the baby can accidentally aspirate or swallow it and then get very sick and so once they saw that I think I still wasn’t dilated enough technically to whatever be admitted, but at that point didn’t take me to the hospital because of the meconium. And I said right away I want an epidural men so
P: I’m gonna pause you right there though for a second to say the thing that gets you in as a sign of distress for the baby. All these things have happened to you. You don’t sound entirely lucid once you have the shell sound right, which is a little disconcerting in a way that you can’t access or communicates. None of that none of that gets you access. To the room. Right? That’s a problem. That’s what I remember.
J: You know, it’s t’s because it is such a chaotic situation. That that that is what I remember being the like, being almost relieved, you know that. There’s no way they’re gonna send me home. I don’t have to go do this by myself. Yeah.
P Crazy. So they put you in a room and and what happens then
J :I get the epidural pretty quickly. And then they give me Pitocin very quick. The you know, depending on what hospital on what OB I might have had, I think a lot of situations they probably would have given me a few sections that the employee but they chose to continue with labor, vaginal labor, and so I had the idea of getting the Pitocin and then the epidural, it actually can lower your blood pressure and and women who have normal blood pressure, it can go into too low. In my case, it just made it look normal. Basically, I’d have to look back at the charts at what it was reading at but it was a high or low and that can be a side effect of getting an epidural anesthesia.
P: How does an epidural lower blood pressure so epidural block affects nerve fibers that control muscle contractions inside the blood vessels. This can cause blood vessels to relax lowering blood pressure. This doesn’t happen for all women who use an epidural but does affect a significant share of women.
J So that might have been another situation where that threw them off like once they got me in. And I had midwife looking at my case at that point, not an OB yet and so an OB might have been like well, she came in with high blood pressure and when she got the epidural and drop, this might be preeclampsia. You know that connection wasn’t as far as I knew, they might have been. It didn’t stay in my chart around that time like watch BP closely. So I think they were aware of something was going on. Like there’s a diagnosis.
P Well, this is all a little scary. How’s your husband faring since he’s present?
J: Yeah,he seems to be doing okay. Like it’s we both felt relieved once I was in the room and had the fetal monitor on me and had the the constant attention of a nurse and all that sort of stuff. And I was so much calmer once I had the epidural and I was laying down and can focus a little bit more. I didn’t feel great, but I you know, again, I’m like, How are you supposed to feel? And it took a long time still, though even with all the Pitocin for things to speed up enough to get to the pushing stage of things.
P: so even though they’re worried about the meconium for the baby, this is not a rush situation.
J : I went in and went in the afternoon, that’s like a time and then I delivered at like 130 in the morning.
P: Okay. And so what’s what’s delivery like with you feeling so awful?
J: Yeah, it was it was scary because they knew that, you know, they knew that she had the meconium so they had a neonatologist from the ICU standing in the room. And I have brought in like the little or big kind of almost looks like an x ray table where they examine the baby. She was standing in the corner like watching my birth, the last like hour took a long time. And I hope that she was watching the heart rate monitor and the fetal signs. They don’t know. I just remember being like I don’t know who this woman is, and she’s standing there. And so yeah Adela is born and very quickly, they rush over to table and the neonatologist takes a tube and aspirates her so my first look at Adela is her with a tube down her throat having fluids suctioned out and so that was just like, you know, you’re just terrified. Hoping she Okay? don’t really understand what’s going on.
P: And my guess is there’s no crying because they don’t want her to cry because their afraid she’ll aspirate
J: Right, exactly. There’s no crying and then they do hand her to me. But it’s brief and I can see that she’s not breathing normally she’s like that panting
P: Yeah.
J: And so basically, you know, you can hold her for a few minutes but we need to take her to the NICU and meanwhile they’re stitching me up I have like an internal tear and an external tear. Can’t feel it but you know, the midwife has done our stitching me up and then they take her to the NICU. And then yeah, the next like three days are just absolute hell for me
P: This already sounds like way too much. Delivery where their silence is terrifying. Right, right. When she when she exits her body and you cannot hear Yeah, I wish we’ve all been trying to listen for sound scary on it’s own. Not feeling well. Then they’re gonna take her away again.
J: Yeah, Her birthday was six, six pounds, nine ounces, and considering the gestational age being at like 41 weeks she was small. She was like at 10% or eight to 10% of what’s normal and that, to me, it was like that’s the sign of growth restriction. She was like getting the nutrition from my placenta that she should have been no one. No one ever discussed that with me though. But when I saw the numbers, I was like, wow, she’s I thought she’s going to be huge based on everything that happened.
P: Yeah, yes. So now they have moved you into recovery. I’m assuming and, and baby Adela is in the NICU?
J: Yeah, she’s in the NICU and I moved to this flip the floor or an area of the hospital. We’re just NICU moms, which I didn’t know was a thing. Either, but I’m sharing a room which I really hated with another woman who had had twins, and I think she was having twins have been there a little bit longer, and they immediately want me to start pumping, because I have a breast pump. And though again, like the sleep was such at that point, I was so sleep deprived going into it. And then it’s like 130 in the morning and they’re really wanting me to try to use the breast pump. And then I remember sharing, it’s just like a curtain between us.
P: Yeah,
J: she’s a twin mom and she is using the breast pump constantly. It’s right by my head and I just cannot sleep I brought earplugs and like an iPod you know, trying to drown out the sound and she’d have family coming in and out. You know, it was just like, you know, so noisy and, you know, just hazy. And I think I think I made one visit to Adela before we started to get more concerned about me. You know, I didn’t feel good. The like 12 hours after I gave birth and it kept me on the IV pole for a while. I guess I was on the IV pole for a really long time but they hadn’t taken out the Pitocin they had I don’t know I guess they keep it in after delivery to continue to shrink the uterus But my nurse at that point it was really the the that RN who picked up and she was like your blood pressure is high. Your blood pressure is high. And she kept telling me this. I was like, you know, I don’t know what it was I don’t know how to respond. I was like, you know, and you know, and she just like she’d come in and she was just concerned. She was concerned. She was the surgeon and so she called the midwife and the midwife came in. And she told me Oh, I think we might you might have preeclampsia and at that point I started crying
P:I’m going to stop my conversation with Joy here, and we’ll pick up the rest of the conversation next Friday. For now I’ll say that this experience of medical care is harrowing to hear about, so I can’t imagine what it was like to experience it. I appreciate that Joy shared it with us, because as hard as it must be to talk about it, it’s important to examine and understand how this is happening to someone at one of the most vulnerable times of her life. Birth is one of those experiences that stays with you for the rest of your life…which doesn’t mean it should be perfect, but to the degree we can keep it from being traumatic, that should very much be our goal. I find Joy’s ability to analyze and relate her experience a real testament to her strength and resilience and it’s inspiring to hear how she used that experience to help other women who ran into preeclampsia
Thanks for listening.
We’ll be back next week with the rest of Joy’s story and more from Dr. Oparil and Dr. Sinkey who share more about their exciting work on preeclampsia
Episode 11SN Wrestling with Preeclampsia: Audrey
Like many women, today’s guest imagined that having a child would be straightforward–that’s the way she’d always seen it portrayed in the culture around her. And at the start, her expectation and experience lined up well. Getting pregnant wasn’t a challenge and being pregnant, was an exercise in smooth sailing for many months. But then the swelling hit, followed by an episode of fainting, and she and her husband found themselves caught up in the whirlwind of preeclampsia, including some of the more disconcerting features of this condition. She is fortunate to have excellent medical care and now both she and her baby seem to be enjoying toddlerhood. Listen to her story of overcoming.
Cover Art provided by Stephanie Davern from Mamapaints on Etsy
Preeclampsia research
https://journals.physiology.org/doi/full/10.1152/physiolgenomics.00017.2018
Blood pressure and preeclampsia
Recurrence of preeclampsia
Umbilical cord and preeclampsia
Paternal determinants in preeclampsia
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6330890/
Sucking reflex
https://www.stanfordchildrens.org/en/topic/default?id=newborn-reflexes-90-P02630
Dr. Rana’s research
https://www.tandfonline.com/doi/full/10.3109/10641955.2013.784788?scroll=top&needAccess=true
https://pubmed.ncbi.nlm.nih.gov/26105375/
https://www.ahajournals.org/doi/epub/10.1161/CIRCULATIONAHA.111.054361
(for more of her research, you can search https://pubmed.ncbi.nlm.nih.gov/ with Dr. Rana’s name and ‘preeclampsia’ as the keyword)
Audio Transcript
Hi, welcome to war stories from the womb. I’m your host Paulette Kamenecka. Like many women, today’s guest imagined that having a child would be straightforward. That’s the way she’d always seen it portrayed the culture around her, and at the start, her expectation and experience lined up well. But into the third trimester, the swelling hit, followed by an episode of fainting, and she and her husband found themselves caught up in the whirlwind of preeclampsia, including some of the more disconcerting features of this condition. Fortunate to have excellent medical care, now both she and her daughter are immersed in the joy of toddlerhood.
After our conversation, I went back into the interview to add details about some of the medical issues that came up. I also spoke with a great maternal fetal medicine doctor who specializes in preeclampsia research. I’m including her insights, not to scare anyone, but to give a full picture of what pre-eclampsia involves.
Let’s get to the interview.
P:Can you tell us your name and where you’re from.
A: My name is Audrey tipper and I am from St John’s Michigan.
P: Oh wow, cool. Is it snowing there.
A: And we just finally got our first dusting of snow yesterday.
P: Do you have one child?
A: We have one we’re one and done actually.
P: Oh, great.
A: We were originally planning on two we thought but because of my experience, and also because of my own personal history, and we’re really happy as a triad and we’re just gonna stick with that I think
P: that’s awesome.
A: Yeah,
P: well good I’m glad that you’re, you know over this part of it right,
A: yes. Yeah,
P: so before you ever got pregnant, what did you think it would be like?
A: you know, I, looking back, I thought that everything was gonna go like this textbook right like, I think that I thought that it was just, you know you get pregnant because they constantly, like your whole life, like you gotta be careful to not do that right. And so I just thought that it would just be super easy and then there you go, and then you go through the process and then you have a baby. And that’s it, and that’s not that I mean, that’s not really what happened for me. Yeah, the getting pregnant was for us we were thankful it was easy, but I know that that can be a challenge for other people and so that part was not our challenging part.
P: Good, we’ll take what we can get right.
A: Yeah, exactly.
P: Did you find out you’re pregnant from a home kit.
A: Yep, yep, we just did it. Yeah, just a little over the counter first response or something.
P: Yeah, yeah. Well, that’s exciting. Yeah, and then take us through the story like what, what, how was the first part of your pregnancy, did you have morning sickness or
A: I had a bit of morning sickness and I was still working, I have a degree in Hospitality and Tourism Management and at that point I was managing a property that rented space to a variety of food vendors or. We also had a lot of events and that sort of thing. So some weeks my hours were decent other weeks were long so you know that was just part of what I was doing. And so yeah I definitely had some, some morning sickness, a little bit in the beginning but then the next like like I guess you’d say the second trimester was was just fine. I was just pregnant and it really didn’t affect too much going upstairs. I was a lot more winded, you know, that kind of thing. But other than that, it was what I thought was pretty normal really then past that I started having issues with swelling. Then as I have, I started swelling like a lot, and I mean it was, it was so much that it was, it was painful,
P: does that I mean like ankles or…what’s getting swollen?
A: My hands, my feet, my legs just really everything honestly my face, you know, looking at pictures you can see it in there too. I was just really swelling and my aunt had had some issues with with her blood pressure and that sort of thing. And so she asked me hey have you talked to your doctor about this, she’s also a nurse so she’s, you know, that’s very you know, the thing that she would notice right away.
P: Yeah,
A: and I said yeah I did actually and they that the doctor that I saw, because that that the practice that I had had several doctors, and at that point in the I was seeing a different doctor every week so that way I could get to know them, if in case they were the one on call whenever I went into labor. Oh yeah so I was seeing all the doctors and the doctors that I saw that day. She really didn’t make me feel at all comfortable about my worries, and my husband and I laughed and we were like, Oh man, that was, was terrible. I hope she’s not the one on call whenever we, you know, go in and.
P: Did she say it wasn’t an issue or like what did she say?
A: Yeah, she was like, I’m sorry, so she was like basically just that I had to suck it up, that it was just part of being pregnant with some people swell and that’s just the way that it is. And so I, so I laughed and I cried actually because I was so upset that that because I was in pain and it was difficult and frustrating. And…
P: I don’t know that I would anticipate that either Right?
A: no, no, I figured she was gonna do something to help me whatever it was I didn’t know but you know she has degree she’s got way more experienced than I do. So yeah, I really didn’t anticipate that at all. And so then at that point I guess we would have been. Let’s see, we would have still had eight weeks ago, so what’s that 32 weeks Iguess
P: Yeah, exactly.
A: So two weeks later, I had another appointment that afternoon, but that the night before, I had gotten up in the middle of the night, to use the restroom because that’s what we do when we’re pregnant.
P: Yeah.
A: And the way my, my bathroom is set up the toilet actually sits in a little alcove so I can, I can put my elbows, you know to wall to wall if I were to, you know, press them out a little bit so it’s just, it’s really just the toilets in this little piece I mean, there’s the bathroom is larger than that but that’s just where the toilet, and I’m really thankful that our house is set up that way because while I was using the restroom, just like what I felt like it was in the movies. I literally passed out on the toilet.
P: Wow.
A: Yeah. And so, I remember thinking, like the next day I’m like that’s just crazy who does that, that’s totally like in a script that’s not real life.
P: Yeah, yeah.
A: And so once I came to I was leaning to the left side of the wall. I had not fallen off, and it took me a few minutes to really come back, mentally to because I realized just lay there against the wall for a while because I didn’t feel like I could stand up or have been set up at first. And so then I went back upstairs to our bedroom and I you know told my husband that I had passed out. And he said, Well, do we need to go to the ER like are you okay and I said, Well no, it felt like a normal passing out.
P: Wait, I’ll have to stop you there for a second. How often are we passing out? What does that mean?
A: I don’t know. in hindsight that should have been a sign that things are not right. Yeah, to be fair, the reason that I thought that I have a vasovagal response to getting my blood drawn. There’s nothing wrong with me. Like I’ve had my heart looked at and everything, I’m totally fine, but and I’m not afraid of the needles so I don’t know what happens for whatever reason, my body’s like oh no that’s not supposed to be here and sometimes I’ll pass out when I get. And so, to be fair, I know, like that’s like I pass out enough from that maybe less than once a year, it’s not really that often, but it’s enough that I have done it, and you’re like, okay this is normal,
P: right, right, no, no, that’s, that’s the only story you can tell, and that makes total sense.
A: Right. It is I, but, but still, that should have been like okay that’s weird to even say a little bit and so my husband and I, we went back to sleep. We didn’t get up and do anything and the next morning when we’re both thinking more clearly. He said, You know, maybe we should call the OB, and just ask about this and yeah that’s probably a good idea. So we were, we went to work, we actually carpooled that day and we’re in the car and I called the OB and I said hey this is what happened last night you know i What do you think, and I don’t know why don’t you just go into OB triage and get monitored and just have the level, you know, a checkout done. So we call our bosses, we’re gonna be a couple hours late, you know, sorry, you know, this is what happened. Okay, no big deal. So we get to OB triage and they check us in and my blood pressure is 179 over 103.
P: Uh-oh
Just a quick aside here, we know this is going to be a story about preeclampsia, There are a collection of symptoms that define preeclampsia, but elevated blood pressure is one of them. And the cutoff for what’s considered high blood pressure is 140 over 90. So Audrey’s blood pressure is way too high already.
A: They were like, Yeah, you’re not going anywhere. So they gave me this, because at this point would have been six weeks early, and or about, I mean, give or take a day I forget what the exact days were at this point that the doctor that came in. Once they moved me on to the to the actual board of delivery board was the doctor that I saw two weeks previously that we didn’t like
P: rut ro…we meet too soon.
A: And I have to say that in hindsight, the day to day business just isn’t her thing. She was amazing. Maternity Ward and, And we were like, is this the same woman but I was really really really surprised and she was able to get things done that we needed to get done for tests and you know, she just really made us feel comfortable and like she was just going to take care of us and so we were really quite thankful actually that she was the one that was there because she just handled things in a way that we felt was not only comforting but just really professional. She just did the right things.
P: That’s awesome.
A: It turns out just the day to day stuff just isn’t her bag. Yeah, yeah. We all have different things.
P: Did they think the fainting was related to the swelling like had you had high blood before?.
A: So, I was diagnosed with preeclampsia, so they put me on a magnesium drip right away, you know, and then the goal was to induce labor at that point because there’s, there’s nothing else to solve the situation from where, from where I was. So yeah, that’s, that’s just the the next steps that we started to do, and, and we didn’t, we didn’t think really too much of it we said oh I didn’t know what preeclampsia was, I had never heard of that before I was told that I was in the hospital with it.
P: I talked to a maternal fetal medicine doctor on the cutting edge of preeclampsia research, to give us some context for what Audrey is experiencing. Hi, thanks so much for coming on the show, can you introduce yourself and tell us where you’re working.
Dr. Rana: Yeah, hi. Thank you for having me here. So my name is Dr. Sarah Rana, I’m a maternal fetal medicine specialist. That’s the high risk OB provider, and I work at the University of Chicago medicine.
P: Okay great, thanks. So let’s talk for a minute about preeclampsia. Do you know how common that is,
Dr. Rana: yeah, so it kind of depends. So if you’re looking in the United States is about, I would say anywhere between five to 7% worldwide and maybe a little bit higher prevalence, you know, overall, all kinds of high blood pressures in pregnancy is like close to 10% So it’s pretty, pretty common,
P: That is common
A: And the doctor did tell him he’s like, look, this is, this is bad, you’re really sick, and this is the solution the only solution is that we have to take the baby and. And this is just this is the next steps and so okay. My husband and I carpooled so we could have date night but I guess we’re having a baby instead
P: new plan,
A: New Plan….Yeah.
P: So are we are we feeling nervous in the hospital now or you feel like I’m where I need to be and so this is okay,
A: you know, the entire time that I spent in the hospital, there was only one time that I was nervous and but otherwise I really just felt like the our doctors and nursing staff and other hospital staff just really were great. You know we were at Sparrow and Lansing here in Michigan and they just did a phenomenal job of doing what needed to be done to keep both my myself and our baby safe as well as, you know, you know they made sure Nick had drinks or snacks if he needed some of that too. So, in hindsight I realize that for us that was it was a really quite serious situation, and in hindsight, I’m a lot more nervous about it, and that majorly played into a piece of why we’re one and done because I don’t want it, I mean if you’ve had preeclampsia are statistically more likely to get it again, you know,
P: yup, yup
according to the preeclampsia Foundation research suggests that the risk of having preeclampsia, again, is approximately 20%. That’s one in five. But experts say to range from 5% to 80%, depending on when you had it in a previous pregnancy, how severe it was an additional risk factors you may have risk factors include things like age, race, whether you’re having multiples in a pregnancy, and a few other things.
A: I want to be here to raise my daughter. You know, I don’t. It’s statistically one of the leading causes of death in pregnant women, and
P: it’s totally scary. I totally agree.
A: Yeah, it’s just, I, it wasn’t worth the risk for me.
P: Yeah, and I actually. Yesterday I talked to a maternal fetal medicine doctor. Yeah, and I was saying can you explain it to me like what do you think is going on and she said we don’t understand like how I preeclampsia, comes about.
A: It’s amazing. They think I’ve read that there’s some relationship between the umbilical cord and preeclampsia, but they don’t know how or why that is. And they also think it’s possible that there’s some relationship that the husband is actually can give it to the baby so to speak to the pregnancy. And so it can come from either line, which is really interesting from a pregnancy standpoint.
P: Yeah, well his genetics are affecting your placenta Right,
A: right.
P: So it makes sense.
A: I agree.
P: So take it so obviously you’re here, and so is your daughter, so take us through the process.
A: I wasn’t sure if I wanted to do an epidural or a natural birth at first. So when I was in, originally I didn’t have that we just didn’t do anything until I, I was ready to make the decision they give me, I forget what was the Pitocin maybe or something but they gave me something, they started trying to induce, and for whatever reason, it just wasn’t working for me at all in any way shape or form. So then they tried …
P: Does that mean like you had contractions but no, your cervix didn’t
A: I didn’t have anything: no contractions my cervix wasn’t dialating was like nothing was happening. And so at that point they tried to forcibly dilate me. Which,
P: that sounds comfortable.
A: It was awful. It was incredibly painful because they stick some balloon in your cervix and then they try to blow it up.
P: Is that the Foley bulb?
A: Yes, yeah, it was really painful. That was terrible, I’m sure, like, yeah, I didn’t like that at all. So they wound up doing that twice over the. Let’s see. I don’t know how many hours but from the time I checked in. So the time we had to make different decisions was like 36 hours was a long time.
P: That is a long time.
A: And so we, we were just waiting for me to start doing anything, and nothing was happening. And this whole time I’m still on this magnesium drip which is terrible.
P: Is the magnesium sulfate making you loopy?
A: it makes me….It made me incredibly weak. I couldn’t sit up on my own hardly I couldn’t move my muscles and from what I was told the goal with the magnesium drip is to is to keep you from having strokes and seizures.
P: Yeah.
A: but I mean I couldn’t even like turn over on my side in bed, it was incredibly difficult,
I hated that. My mother in law did drive out because I hadn’t even packed a go-bag, I thought I had six weeks.
P: Yeah,
A: I thought I had all this time, no time. And so, you know, we didn’t have anything that we would have, like we had this great list, you know of all this stuff that we were going to pack, but none of it was with us because we did not plan for six weeks early. So yeah, we’re, we’re just at that point we’re just waiting. We’re waiting for my body to do anything. And so I finally start to have contractions 36 hours later. And every time I have contractions. Her heart rate drops through the floor. It basically just is completely almost non existent like they don’t even know where, like, it doesn’t even register anymore.
P: Good Lord. That’s scary.
A: It’s really scary. Yeah. So, at that point, they decided I needed to have an emergency C section because they told me Look, something is wrong. We don’t know what it is, but we need to get her out of there, and we don’t think that natural birth is the way is the way to do it safely. And so we were, you know, at that point we’re like, Oh God, this is really scary, because, you know like, this is not part of our birth plan, this is not written down. And, and so they started to prep us for surgery and, you know, I met the anesthesiologist was was awesome, actually he, he and his partner there was two of them that that work together to do that part of the job. One of them was from one of them had spent time in the army and the other expense, I want to say, Navy, Marine Corps Navy I forget which I know they’re completely different but and I have some friends in my life that I consider family that have spent time in the Marine Corps, so I like this fun banter that was normal to me, you know, between the branches was, was what they were doing and I just it felt really comfortable, which was nice because I needed something to feel semi normal in this crazy situation that. Yeah, so they wound up doing the, not the epidural, the other one, put it in the same place but it works slightly differently. And, you know, my husband was able to be in the OR with me and he’s up by my head and they took took her out, and it’s such a strange feeling because you can’t feel any of the pain but you can still feel them moving things around and you can still feel their fingers and it’s very strange.
P: I thought it felt like being on a roller coaster. Yeah, like, move all your organs back to where they’re supposed to be, I thought that was weird, I had a C section, too.
A: Okay, yeah, just the feeling of, like, yeah, that’s just strange and my husband, he said I wanted to look, even though I know that sounds weird, but I didn’t want to be a liability in case I had a problem with it. I was like thanks honey I appreciate that because I really needed to be the priority right then . They had taken right away to the queue with being six weeks early, we didn’t know. You know what state she was going to be in and what type of care she was going to need. So he went right with her and then my mother in law came in to my like recovery room and she’s so she stayed with, with me for a little bit in there, and then I still spent like another week, not quite a week in the hospital recovering because I was just that we couldn’t get my blood pressure down. And we really, they they gave me all these different types of meds I was on like three different blood pressure meds at once to try to regulate it, and we couldn’t they just couldn’t get it to come down and I want to say, maybe for like the weird thing too, because I was so sick. And because of, I think partly because of the magnesium, like I had this one picture with Linnea and I got to hold her for like a half a second, and then they took her way to the NICU and I didn’t like I didn’t get to do you know like the chest thing that you that like
P: skin to skin
A:Yeah, like you have skin to skin and you get to do any of that. And I didn’t even register that I was missing it and I didn’t even miss her at first because I was just so sick that I wasn’t functioning.
P: Yeah,
A: and like looking back on that. It feels weird because I hear all these stories from other women whose, you know, who got to experience that skin to skin and who still got to be mentally present, you know, with, with, with their babies when it after birth and I can’t relate to that at all. I didn’t even register that I needed to go see her, because I was so sick.
P: Yeah I think that’s, I think that’s fair. I think it makes sense, right. Like, you don’t have all the oxytocin because you’re not supposed to be delivering and you’re not right, you’re like, not in that frame. So yeah, that’s perfect sense.
A: Yeah, yeah, it does, I get the logic side of it, the emotional side of it, it’s a little weird. Yeah and then then like three days later, I woke up in the middle of the night. My husband had been staying with me this whole time because they had like a cot thing that they were he was able to stay on in my room. And I couldn’t breathe, I had some my chest was like, like, painful, and I couldn’t figure out, I didn’t know what was wrong with me so I press the call button for my nurse, and she came in and, and she told me later that when she called the doctor she was like, You need to get down here now I’ve been taking hair care of her for three nights and she has never acted like this. So, my husband had just stepped out for a few minutes because I was sleeping and he had went up to the NICU checked on Linnea stayed with her for a little while to spend time with her, and then he went down to the cafeteria got himself a candy bar, so he’s walking down the hallway. And here all these like, people with, with supplies, you know the rolling supplies that they bring to the rooms, they’re like running past him like he’s like, Oh, I hope they don’t turn down my hallway, they turned out my hallway. Nick’s like I hope they’re not turning into her room, she was fine when I left her, so of course like he turns them and there they are like this room is full of like 15 people and my husband’s like, what’s going on. She was fine. A few minutes ago. And so they did, like they did all kinds of different things to try to figure out what was going on and basically what was happening is I was drowning my lungs were filling with water because I had been. So, I was still so swollen and still so many issues from the, from the preeclampsia that it, it was the water was starting to release a little bit and chose to settle in my lungs.
P: Good lord is that, is that a normal preeclampsia reaction.
A: I haven’t heard anyone else having that happen. I don’t know,
P: three days after the baby was delivered. Audrey had fluid in her lungs.
Dr. Rana: Uh huh, pulmonary adema
P: yeah and her description of it was, I had so much fluid in my body from all the swelling and everything that it was the fluid was looking for a place to go and it ended up in my lungs. Is that an unusual outcome from preeclampsia.
Dr. Rana: Oh, actually not a lot of people can tell up so what happens in preeclampsia and any kind of, you know, hypertension, is after delivery. So first of all around the time of delivery people get IV fluid, and then by about like day three, day four, they start to mobilize these fluides. So in a sense, She’s kind of right in a sense that she’s saying that I had all this fluid in my body like it had to go somewhere. Normally people kind of reabsorb it back into your circulation and just merely peed out. Yeah, so you just have like, so but now you can have not only edema postpartum, it can develop even during pregnancy and, and during labor but it’s actually quite common to develop with that, after delivery and a lot of people are saying it’s because of this combination of your pre eclampsia because your vessels are leaky, then you get all this extra fluid when you were in labor and then you re mobilize all this food like three to five days after delivery, and then some people say maybe even taking drugs such as motrin, you know NSAIDS, especially if you have renal dysfunction that can also cause you know some of this impaired renal function to diurese and get all the, all the fluid out so you can then accumulate food in your lungs.
A: That was the moment before I initially gave me some lasix and it thankfully cleared me up. But that was the moment where I started to wonder if I was going to go home or not.
P: That’s terrifying.
A: Like I I started to wonder if I was gonna die like if I didn’t get to be a mom if I didn’t. If my daughter didn’t get to have both parents.
P: I’m so sorry. That is terrifying.
A: Thank you.
P:, it must have been a terrifying, it’s like must be a terrifying feeling.
A: Yeah, yeah it’s it’s really scary like. Not sure. You’re going to keep living I. Yeah, it was tough. That was the hardest night for sure.
P: So what did they give you? and it worked immediately.
A: Pretty, pretty close to immediate, really fast at least it’s called Lasix, it’s basically just a dehydrator. And it basically makes all the water, P and they say P out like a ton. And so,
P: thank God for that.
A: Yeah, seriously. Yeah,
P: so they figured out that there was water in your lungs.
A: Yeah, they did a chest X ray right there in my room that was one of the machines that they had brought in and that was one of the things that, that, that showed but because I complained of chest pain. The next day they also did like a heart like a sonogram like yeah so I had to do that. The next day, and a couple other tests that they wanted to just make sure that I wasn’t having heart issues and thankfully, it didn’t show any heart issues at all, and I was on blood pressure meds another oh I don’t know, three or four months.
P: Wow.
A: For a few months and I’ve read that some women never get off the blood pressure meds after having preeclampsia and for some women it’s about like what I experienced a few months and I’ve also read that myself and my daughter are at a higher risk factor for heart issues the rest of our life because we had preeclampsia together. There’s a lot of research that still needs to be done in order to figure out why and what can be done to help and that sort of thing but, you know, I try to stay as updated as I can now that I’ve had it
P: What does preeclampsia mean long term for women who’ve had it
Dr. Rana: There’s really no cure to preeclampsia, so there’s lots of data that preeclampsia leads to long term physical cardiovascular damage. So patients who have preeclampsia, are at risk to have lots of outcomes that are happening related to all the insults that happened during pregnancy or intrapartum period, immediate postpartum so patients who have preeclampsia at high risk will have high blood pressures after delivery, their higher chance to get readmitted with heart failure. And then after that they have a higher chance to have developing chronic hypertension, they have higher chance to have cardiovascular disease such as they can have MI and heart failures and edit me as an cardiomyopathy, they in fact have a higher chance of dying Absolutely. When you adjust for all of the risk factors of preeclampsia is a massive risk factor for long term cardiovascular dysfunction which lots of studies have now come out is not so long term actually start soon after delivery. So a lot of specialists in the, in the field are trying to walk away from the fact that just like write it off and it gets cured , we don’t want to say that you say well, delivery of the placenta and the baby will resolve some of the signs and symptoms of preeclampsia so your hypertension resolves in the acute phase, and you upload your lab abnormalities it resolves your renal function recovers, you know your kidney, your liver function will recover, but it does lead to long term, short term and long term postpartum outcomes. So, we are not saying now that it’s a cure. It’s actually just, it was all some of the symptoms but you have to watch these women really really carefully postpartum to prevent some of these complications that are happening to them after delivery.
P: So I know there is this higher risk of cardiovascular disease, but the pool of women who run into preeclampsia, is pretty heterogeneous so you can have preeclampsia at 34 weeks so you can have it later than that, it can be mild, moderate, severe are all those people at risk of cardiovascular disease or do we know whether some are more at risk than others because those two things seem like different kind of syndromes.
Dr. Rana: So they’re like two types of people like you were saying, so not just when they develop the patrons, but also what risk factors they have so there are, there are people who have pre existing cardiovascular risk factors, so if you are obese if you have higher, you know, BMI you are African-American race you have diabetes, you have other kind of risk factors that you came into pregnancy, and then that predispose you to have preeclampsia, so you know pre patients who develop preeclampsia have some of them, a lot of them have underlying chronic conditions that predispose them to have preeclampsia and then after they have preeclampsia the same cardiovascular risk continues right so then there is inflammation. There is androgenic imbalance there is all these hypotheses oxidative stress that all happens during, During pregnancy, then it kind of makes your cardiovascular system even more under stress, and then it kind of continues postpartum and then you develop long term cardiovascular disease. So that’s one group, but there’s obviously this group of patients who have no underlying cardiovascular dysfunction so you know they are not obese, they’re not have any other risk factors and they develop preeclampsia, so this is a kind of debate in the literature, whether it’s the pre existing cardiovascular disease that predisposes you to preeclampsia than that confused or preeclampsia per se, creates an insult in your body that predisposes you to have the cardiovascular dysfunction, but in terms of epidemiological evidence so yeah you’re right, patients who have term preeclampsia to slightly lower risk to have cardiovascular dysfunction compared to patients who have early eclampsia. Similarly, if you have severe preeclampsia, those people are at higher risk. If your preeclampsia in multiple pregnancies. Those people are at higher risk. If you have preeclampsia with preterm delivery so preeclampsia was that bad that you ended up delivering less than 34 weeks lesson 37 days you are at higher risk to develop cardiovascular disease and of course postpartum. If you have other cardiovascular risk factors and you certainly are at higher risk to have, you know, such as if you develop hypertension, then that’s independently increasing your risk of cardiovascular disease, above and beyond your risk to have been a risk, just associated with PMS, yeah. So yeah,
P: this sounds like this also answers another question which is, which I asked every maternal fetal medicine doctor does pregnancy reveal underlying conditions or does it cause it, and it sounds like you’re saying, both
Dr. Rana: Oh yeah, yeah, it’s a little bit of both, because there are some people and you know that’s why people are saying that maybe there are women whose cardiovascular system just cannot take the burden of whatever the markers are or whatever the, you know proteins are being released from the placenta and they just, then they develop preeclampsia. A lot of people are saying that it is like very chicken and egg theory, And the only way to prove that would be to take a cohort of people before they get pregnant, and then follow them out, you know, and then none such good studies have been done, but animal there’s animal evidence that you know if you just create preeclampsia in an animal they are at risk to have cardiovascular dysfunction later, after they deliver.
P: this is a long list of trouble that can follow on the heels of a pregnancy visited by preeclampsia. When i listened to my conversation with Dr. Rana again, I emailed her to ask if there’s anything positive that women can take away from this information and she basically said that Knowing that these risks are present, and finding them at a relatively young age, women have the opportunity to make changes to their lifestyles to potentially change their risk profile. if you follow up with your internal medicine dr and cardiologist, tell them that you had preeclampsia so that they can help you with life style changes.
P: I mean I did I say, the woman from UCSF Why do people continue to have high blood pressure after the placenta has been delivered, if that is the mechanism causing the high blood pressure and she said she didn’t know and maybe it’s a good sign that yours has, has actually resolved.
A: Yes, I am, I definitely feel like I was really lucky, I know, I mean I know it can go either way you can go on to have preeclampsia again or you can go on to never have it again and have three more kids and never have the same issue. So, it is just, you just don’t know at this point but I’m very thankful that I haven’t had any other issues, You know, after we left the house after I left the hospital we were, we were able to stay at the Ronald McDonald House, we were just so thankful for that we, that really made a huge difference for us
P: that’s an amazing organization right?
A: Oh, amazing…
P: so that you can be close to the baby in the NICU.
A: Yes, yes. And we were literally our, this house is literally across the street from the hospital where we are and I couldn’t even walk at first, across the street to get to her. That’s how much I was in pain and from my C section and so you know my husband would drive us across the streets, so we could walk into the building. And now I have a friend whose son is a month younger than linea, we were two weeks apart for our due dates and so it’s pretty exciting that we were, you know pregnant together and so I went to visit her, she also wanted to having to have a C section because she’s so tiny, it just, yeah, that was probably the best for her, but she, she was a week postpartum. And at that point I would have been five weeks postpartum. And she’s like, up and walking around and picking stuff off the floor and I was, we laughed and I was like Nick and I told her this years later, but Nick I can’t go back and visit her right now. I still can’t reach the floor and I’m five weeks postpartum because I had had so many issues, and I was on so you know different drugs for everything else and I don’t know exactly what affected what I don’t know about that but like I was so sick that I literally cried in the car because i. So,
I guess, jealous, really, really that’s what it comes down to I was jealous that somebody else had this amazing experience with their birth as compared to mine, because it was so bad…
P: Yeah, that is a dramatic difference although given that you were on medication for months after the birth, like your body, obviously had a lot of things it was going through right.
A: It was, it had a lot more. Yeah.
P: And how was linea, what how was she like, how big was, she was three pounds 11 ounces, she was very little 16 inches long, she was quite long.
P: Although, That’s not bad for that time right?
A: No. she did, she was, it was okay. Yeah, she thankfully was on breathing, assistance for only, like 12 or 24 hours, It was I can’t remember which now, but it wasn’t that long.
P: That’s awesome.
A: Yeah, the main thing that we had to wait for her to figure out was how to eat, she could not figure that out, that took probably half of the time that we were in the NICU. The doctors were like yeah she can go home but she can’t eat. So, we can’t let her go because we had a lavage feed her for a long time.
P: Is that a. Is that like a dropper or ?
A: No they stick, a tube down her nose.
P: Because she didn’t have a sucking reflex?
A: she didn’t she wasn’t able to do it. Yeah, she’s too early, I guess they learn how to do that with the amniotic fluid later on in the pregnancy. She was born too early.
P: According to the Stanford Children’s Hospital, the sucking reflex starts to develop around the 32nd week of pregnancy and is not fully developed until about 36 weeks. And they say premature babies may have a weak or immature sucking ability because of this.
A: Yeah, so she was in for, like you said three weeks, and yeah and then we said we just had to wait for it to eat and truthfully. That’s been an issue that has continued throughout her three and a half years, because we started presenting you know baby food type things at six months or so like they suggest that’s the current suggestions, and we would present and present and present and present and present and she just had no desire to eat it. I mean, I would say the first time she actually had a meal of food. She was probably 13 months old. I mean well over, it was definitely over a year old, maybe 14 months I don’t remember now, I probably have it written down somewhere that she just had no desire to eat, and thankfully I mean I was able to breastfeed, and so we just I just kept feeding her, what else to do. My plan originally was to breastfeed for about a year, and then you know transition into normal food, but she, she had other ideas. So I breastfed till about 17 or 18 months for her so about a year and a half, because she just, she just was she wouldn’t eat normal food she just had no interest. He loves yogurt. And I would say for the next year, was difficult to get her to eat anything but yogurt. She just had no desire, just didn’t we just didn’t want it.
P: Do we think it’s a texture issue?
A: No, because she eats to eat she’ll try anything. She’s very good at frying something she just won’t eat a full meal of anything. Now she’s doing okay with it. I think she eats you know, normal foods now, and she still gets quite a bit of dairy so I don’t know maybe her body just needs dairy maybe she’s pretty big. I don’t know. Yeah, but
P: yeah
A: so it’s interesting watching that progress though because she’s definitely that’s, that’s certainly been a theme for her life.
P: What she into now?
A: she was she loves school actually she really loves going to preschool she loves being outside. That’s one of her favorite things to do, but my husband and I like to you know be outside too so that’s, you know, my husband and I, we both grew up on farms.
P: Wow.
A: Yeah. And so, you know, my husband’s still enjoys farming. I am thankful it’s part of my history. I have no desire to get up and milk cows in the morning. She loves being outside. She loves to build is really a feel like a knit like. I mean, who knows, we’ll see what she really gets into but she seems like she really likes to stem type of stuff. She likes to see science experiments you know with the baking soda in the vinegar or you know stuff like that. during the beginning of the pandemic, we have a husband does 3d printing for fun, and also volunteers for a robotics team here at a local high school and so we had like, want to say with six 3d printers and in our mudroom in our back room, and we were printing, ppe. In the beginning, back there like helping with the robots she calls, B bots, of course. And so yeah she really just as into that kind of stuff.
P: That’s cool. That sounds fun.
A: Yeah, yeah, it is a lot of fun.
P: So let me ask you, if you could go back and give advice to your younger self, what would you tell her?
A: You know, I’ve thought about that actually. And the one thing that I would do differently than what I did before, because there wasn’t any sign, other than my swollen this, I would have started taking my blood pressure at home.
P: Yep.
A: That’s and I would have taken it every day a couple times a day, once I realized that I was that swollen and, and, you know, I talked to the doctors about that later, like what, you know, then they had actually tested me for preeclampsia, while in the office, the two weeks before I went in, so they, There was nothing at that point showing up in any of their tests that I had preeclampsia. The only thing was just that I was swollen and they’re not wrong but some women do just well when they have pregnancy.
P: So I have read a bunch of your work, and it looked like some of the things we’re working on our biomarkers to try to identify preeclampsia early and it looked like you had one specific measure that was the ratio of two chemicals. Can you tell us a little bit about that.
Dr. Rana: So there are two proteins, one is called soluble fit one and the other one is plgf placental growth factor so there are studies, lots of them, animal as well as, you know placental studies that this protein specifically soluble fit one is high, and women who have a fancier, and then calculating levels we can measure them in your approach so it’s like some similar to measuring for example a blood count in your in your blood, so you take out the blood, and then you measure this protein. And then this other protein plgf which is placental growth factor so soluble fat is high in women who have preeclampsia and plgf is low. So when you combine that ratio. That actually is a very good test to predict who is going to develop adverse outcomes, or who’s going to develop a plan so a lot of papers that I have written and what we’re trying to figure out is if you see a woman who has a suspicion of preeclampsia, so for example your lady was complaining or swelling, and blood pressure was probably fine. So preeclampsia has a lot of nonspecific signs and symptoms so you can have a headache, but headache is a very serious symptom because a lot of them who have a cloud of seizure, can have a headache that precedes your Atlantic seizure, so we can’t ignore headache, the concept of like somebody who’s pregnant and even without the potential, then it has things such as swelling, it has like, you know you have some pain here in the right upper corner but your labs are fine in patients who present some silence of preeclampsia, so they have mild amount of hypertension, but they have no protein or their mind about a protein, they don’t fit the diagnostic criteria, and even fit the diagnostic criteria these biomarkers are really good to differentiate who are the women that are at risk for example, people who are the women who are going to develop help syndrome, who are the women who are going to develop like some of the similar features of the fancier so identifying patients who are at risk among patients who have some clinical suspicion of preeclampsia, so that’s one of the kind of the ways that we look at the use of biomarkers in women, and you know you can imagine if you can do an early identification that will potentially you know in the real world will potentially help patients by either triage in them out and saying hey you know your levels are really normal and no so you’re probably not at risk, even though you have hypertension, compared to somebody else who whose levels are very high, you can say hey you know what you are at risk to have some sort of a preeclampsia related adverse outcomes, not that I’m going to deliver you, but maybe I’ll follow you really carefully.
A: Yeah, that’s the one thing that I would do differently, I was immediately start taking my blood pressure.
P: Well, as you said like preeclampsia was not on your radar,
A: I didn’t even know what it, I’d never heard of that word before.
P: Yeah,
A: which is now like anytime I talk to pregnant women that are like what should I know and I’m like, Well, yeah, I’m not saying you’re going to get this but what I am telling you is just to be aware of it.
P: Yeah,
A: all kinds of other things that could be a potential thing with pregnancy that could be your thing that, or maybe not that you wind up dealing with, but I guess the fact that it’s one of the leading causes of death in pregnant women now terrifies me that we don’t know about it that it’s not something that, That is a common thing that we are aware of.
P:Well, I mean, as you suggest, and this is my kind of motivation for this podcast as well. You kind of go into it thinking it’s gonna be fine.
A: You find great babies for millennia.
P: Yes, and like it just it seems like it might be easy, right, like, it will get pregnant without trying and yeah so I agree that it’s that we need to kind of be a little bit more aware of like all the things that can come with pregnancy.
A: Yeah,
P: but that certainly isn’t the way the system is set up now. No. So yeah, so hopefully you know, as we as we learn more, there will be more available to people,
A: to, yes, yes, I mean, that’s true. Yeah, that’s very true.
P: Thank you so much for coming on and sharing your story today, I really appreciate it and I’m happy to. Thanks again to Dr Rana for sharing her insights about preeclampsia, and some of her amazing research. And thanks also to Audrey for sharing her story in the shownotes, a link to some of the research that Dr. Rana described. If you’d like this episode, feel free to like and subscribe if you’d like to be a guest on the show, go over to the war stories from the wound website and sign up. We’ll be back soon with another story of overcoming.