Episode 63: Suddenly Blindness, a Run in with Preeclampsia, Diana’s Story, Part II
Episode 63 SN: Suddenly Blindness, a Run in with Preeclampsia, Diana’s Story, Part II
Today we hear part two of my conversation with Diana about her experiences with pregnancy and delivery. Last week, our conversation ended with Diana 41 weeks pregnant, partially dilated, stomping around in the hall of the hospital trying to get her baby to move into a better position for birth. When all of a sudden she loses her sight. We’ll pick up the conversation where we left off in this part of the episode I also include the insights of a doctor training in ophthalmology and neuro ophthalmology.
To find Diana’s writing, go here
Bell’s Palsy in Pregnancy
Sarah Ruhl’s book is here
Risk of Preeclampsia in a First or Second Pregnancy
https://www.preeclampsia.org/the-news/community-support/after-preeclampsia-another-pregnancy-or-not
Abortion Statistics
https://www.guttmacher.org/united-states/abortion/demographics
Audio Transcript
Paulette: Hi, welcome to war stories from the womb. I’m your host, Paulette kamenecka. I’m an economist and writer and the mother of two girls. Today we hear part two of my conversation with Diana about her experiences with pregnancy and delivery. Last week, our conversation ended with Diana 41 weeks pregnant, partially dilated, stomping around in the hall of the hospital trying to get her baby to move into a better position for birth. When all of a sudden she loses her sight. We’ll pick up the conversation where we left off in this part of the episode I also include the insights of a doctor training in ophthalmology and neuro ophthalmology.
Diana: So let’s go back to the chronology they told me to go stomp down the hall sleep at night I’ve been in active Labor’s you know for at least 12 hours maybe longer but also I’d been in that prodromal labor for days have contractions that stop and start but little very painful contractions. They just weren’t doing anything. And I’m stomping and like half naked I mean it must have been looked absolutely insane. And then I went blind. I couldn’t see
P: out in the hole while you’re stomping?
D: Yeah. And I started screaming I can’t see anything I can’t see. And I think my husband had been with me and he calls for the midwife or whoever is attending and they kind of come and get me back in the bed. And I checked my blood pressure. And it is sky high. I mean, I think they’d been monitoring it a little but I hadn’t really shown signs that were in the danger zone beyond maybe like a little bit of elevation. But I had severe preeclampsia. So much so that I had lost my vision because your brain swells and, you know, something had happened to the ocular nerve and I could not see I was blind. And that is where at that point. I pretty much don’t remember anything and I have to take the rest of the experience from my husband Tim story where it’s very, very serious.
P: Today we’re lucky to have Dr. Avi sonra on the show. She’s a doctor trained in ophthalmology and neuro ophthalmology and currently finished her training in neurology at the University of Kentucky, Dr. Abu Samara, thanks for coming on the show.
Dr. Abusamra: Oh, thank you very much for having me today.
P: We’re here to talk about Diana, who runs into severe preeclampsia many hours into her first delivery, and it takes the form of high blood pressure and complete blindness she was shocked by the sudden onset. I’m wondering if preeclampsia tends to overtake a person so quickly.
Dr. Abusamra: Yeah, yeah, it can. definitely can. So you know, the definition of the clamp says the new onset hypertension, and that’s associated with the proteinuria. Their success should be certain amount of protein in the urine. Or the new onset of hypertension in a patient who did not have hypertension before in association with some organ dysfunction. And I think the heart and the brain and it can effect the eyes so yeah, it can it can make the patient turn around so quickly.
P: Can you explain how preeclampsia creates blindness?
Dr. Abusamra: Yeah, so most of the DataLogic changes that happens in in the pregnancy are actually related to gestational hypertension and preeclampsia and eclampsia and preeclampsia and eclampsia there’s like a vascular damage endothelial damage, and this damage will we’ve cause different pathologies. Blindness in the preeclampsia and eclampsia is rare, but it happens and I think the the incidence rate is around one to 2% one to 3% of severe preeclampsia. Preeclampsia can result in blindness and the blindness and eclampsia. Preeclampsia can happen because of either damage that happened within the eye itself like the ocular structure some somewhere in the eye or damage happen or due to insult to the brain surprisingly. So if it’s if it’s caused by damage to the eye, it’s either caused for example, by bilateral retinal detachment, sometimes eclampsia of severe enough can cause serious detachment of the sample some some layers of the retina, and typically in a big lousier. It’s bilateral and it’s a dramatic and it can cause bilateral vision loss.
P: Let me stop you there for one second. So you’re saying high blood pressure causes enough pressure on the eye that it part of the eye is detaching, and it happens in both eyes. That’s how easily
Dr. Abusamra: it’s not exactly the the hypertension itself. It’s what results from the hypertension. For example, there’s there’s edema forming between the layers of the retina because of the severe hypertension and the vascular injury that can cause the Internet to detect. It’s called like serous retinal detachment and it’s a dramatic in preeclampsia, and usually multiple of the eyes
P: do we think that happens in some people because of the specific architecture of veins in their eye?
Dr. Abusamra: we don’t know the exact mechanism is not completed and patients get affected is not clear either, but this can happen. But they will think about it that the treatment is conservative management and once the reason for the detachment stops because I’ve been controlling the blood pressure. It resolves. Nowadays there’s there’s more focus to one or the other cause of blindness and the people I’m seeing eclampsia, which is actually the brain. So there’s something called cortical blindness which means that the patient will develop blindness without any issues with the structure of the eye itself. So if you examine the eye, it’s fine. There’s nothing to suggest nothing to explain why the patient was visual, right? However, it’s closed because of the damage or like an insult to the part of the brain that is responsible about interpreting vision, which is usually which is called the occipital cortex. So this type of disorder the cortical blindness is usually a part of a syndrome called PRES. PRES is the posterior posterior reversible encephalopathy syndrome. And patients in such syndrome will be complaining of headaches, sometimes they’re confused seizure and blindness. This is because of the severe hypertension will cause damage to the autoregulation of the blood vessels inside the brain. And the most common area that’s affected in such cases is the occipital lobe and the parietal lobe. occipital lobe is the is the part of the brain that controls vision. So that’s why patient might lose vision because of preeclampsia
P: what I’m focused on in that description is I thought you said reversible.
Dr. Abusamra: Yes. First of all, yeah,
P: so even though it’s we’re describing it as damage it we it can be fixed.
Dr. Abusamra: Yeah. And so yeah, it’s, it’s more of a like a temporary damage. That would be because of the severe hypertension and the DIS regulation of the blood supply to that area of the brain. There’ll be a temporary, dysfunctional in that area of the brain that controls the division, and that’s why a patient might suddenly become blind
D: at that point to have severe preeclampsia.
P: I had like I’m covered with goosebumps. Oh my god. Yeah, just it seems like it came on so fast.
D: It did. I mean, I it’s hard to know what the different markers were. I never asked like Well, what was my blood pressure, you know, a day ago, but clearly they weren’t worried about it. Right. And you know, the, like I said about the the formula like I’ve been so active and healthy and like everything had been great or whatever. Not everything was great. I was kind of depressed and my dad had died and all that but physically, I think I I presented healthy and but then there I was still at six centimeters with the baby and occipital, posterior and I was blind. And it was terrifying. It was terrifying for me. It was more terrifying for my husband who was watching and I think started to be afraid that I might die.
P: Yeah,
D: and nobody was paying attention to him.
P: has everyone said it’s preeclampsia?
D: I mean, once they took the readings, I mean, I think they had to check my blood pressure right away and they got the whatever they’ve been they put the band on for the baby’s heart rate. And probably I’m not probably getting all the details right because I was blind and I was kind of out of my head. So what they do right away is they give you something called magnesium sulfate, which basically kind of stabilizes you. There was no way I was going to be able to give a vaginal birth in that state
P: yeah
D:, I was blind. I was kind of out of my mind. The baby was stuck. And so they gave me this mag sulfate, which made me completely loopy. I had no idea where I was and this was the thing was really scary for Tim. I had no idea that I was even pregnant and in labor anymore. So I was like hallucinating and calling out things like what’s going on and why does it hurt like?
P: So at some point, obviously they put her on magnesium sulfate. She said she didn’t know she was pregnant or why she was in the hospital. And I’m wondering why magnesium sulfate has that consequence or
Dr. Abusamra: I’m not sure if it’s actually due to the magnesium sulfate. Now you’re talking about magnesium because I know that magnesium they use it in pregnancy and patients who have preeclampsia or eclampsia to treat the hypertension and return seizures. But maybe she was confused because I’m not sure what was the reason for her vision loss. But if you if you should see if she’s saying that she was confused at that time, that she actually developed PRES, which is the posterior reversible encephalopathy syndrome, where patients actually confused by the hospital like they disoriented to time to place they don’t know what’s going on with them. So it’s gonna be this is part of her hypertensive emergency that happened in the time of preeclampsia rather than the magnesium is the magnesium should be like a treatment for your condition not causing her to be confused.
D: So they said we need to do an emergency C section. She has preeclampsia. We need to get the baby delivered. But it was I don’t know like Saturday night in a small hospital in Keene New Hampshire. And it took a while to like get the anesthesiologist It was like he said it was two hours of waiting.
P: wow…Oh my god
D: with me in that state. I mean maybe it wasn’t quite that long. But with me in that state not even knowing I was pregnant, being blind and going from natural birth goals in the walk in like the tub to blind severe preeclampsia and hallucinating so at that point. I really don’t remember anything. He remembers a lot more than I do. When they did this. Like no one was like, we’re going to do a C section. This is what’s going to happen like it was just full on emergency mode.
P: Yeah, yeah.
D: No one talked us through it. Even if I had been able to understand certainly no one talked him through it. And I had never read the chapter on C sections in the birthing book, because that wasn’t gonna happen to me. I was a yoga teacher and I was super healthy and I exercised and took my vitamins and like, did my Hypno birthing exercises. So who knows if that would have made any difference but that was part of just my unpreparedness I want to say right now on this podcast like every woman should read the chapter, just read that chapter just understand that sometimes there are situations where this is a necessary outcome. And like you should understand what it is and also maybe what your options are for that kind of a delivery. So I don’t think Tim was even allowed in the room. Maybe you know, I can’t you know, there’s certain things that are hazy, but eventually our baby was our baby Ava was delivered. And I couldn’t see her. But because I was blind still but I remember this is like such a powerful physical memory was like they took her and they held her up to my face, and I could smell her and then they whisked her away to have the you know, things sectioned out. And that was another real grief because we had had this plan of skin to skin afterwards and you lay the baby on the chest and like none of those things happened.
P: Yeah, yeah.
D: And for a long time I worried and I I was so sad that I failed my my baby because she didn’t get that. In fact, my mom had even given me a book on how important skin to skin was. It was some beautiful book of pictures and it was like showing that that sacred time after the birth is very quiet and it was like, that didn’t happen for us, you know?
P: Yeah,
D: but here’s the thing. Our baby was so healthy. She was a eight pounds, 10 ounces. And like, you know, she’d been in there, you know, a long past 40 weeks and do this big, round cheeks. She nursed immediately with no trouble ever latching no trouble ever with nursing. And so then by the next day, so we spent like a good three days in the hospital, you know, recovering and everything. My vision did slowly return. So that was obviously a great relief and blessing.
P: While you’re waiting for that to happen. Have they told you usually people get their vision back or….
D: I don’t really remember that interim time. The timeline between when she was delivered when they brought her to me like all of that like I couldn’t see I think I was just I mean also they gave me I went under for I was fully sedated for the action. Yeah. Which I think I think it’s better to just have local and not have general anaesthetic but
P: my understanding is that is that it’s much faster acting to get general so yeah, when it becomes an emergency. That’s why they flip the script and make it Yeah,
D: yeah. So you know, there’s so much of it, that’s just it’s just hazy. They’re these sort of parts of the memory that burn really bright like the baby being like, I could smell that her and then I could hear her crying, which is obviously good noise and but then kind of fast forward to being in our hospital room and there’s baby Ava, and she had a full head of dark hair that kind of stuck with red temps that kind of stuck up. She was totally adorable in a way that like a lot of newborns are and she was nursing and healthy and had all the Apgar you know was a champ and she would like lay on Tim’s on like within the first day lay on his chest and she could kind of frog kick, like up it. I mean, that was amazing. And I realized pretty quickly, like whatever trauma that I’ve been through and that we’ve been all been through together. Like this baby was thriving. And I feel like as I had to process what happened over the next weeks and months and even years I held on to I kept my baby alive and strong. And she is okay. And that’s the most important thing. It’s not whether I had that ecstatic, orgasmic waterbirth in my living room, naturally like you know, be a birth goddess. That’s beautiful if another woman can have it and and I had to let go of that and then instead look at my real life baby who was just amazing.
P: That is amazing. And it sounds like your symptoms resolved slowly. While you were in the hospital. By the time they release you was she was your blood pressure normal?
D: Yeah, they kept me on the mag sulfate and they had to get it down to a certain time before they wouldn’t really say one other thing happened that was pretty scary. Was that by the next like by the next day, by the time my vision came back. At some point in the interim after the birth I developed a Bell’s palsy in my face so I had like a whole drooping side of the face. Scary. They were like they didn’t know if I’d had a stroke. Yeah, they didn’t know why they didn’t know if it would resolve.
P: Bell’s Palsy is a facial nerve neuropathy. That’s a rare disorder, but apparently occurs at higher frequencies in pregnancy. Almost 30% of cases are associated with preeclampsia or gestational hypertension. In fact, pregnant women are three times more likely to experience Bell’s palsy than non pregnant women. With a predominance in the third trimester. Several theories exist as to why there’s an increased incidence of Bell’s Palsy and pregnancy. And those include the following increased total body water leading to swelling and our compression of the facial nerve. weakened immune system especially in the third trimester, which can lead the reactivation of the herpes simplex virus. Increased blood clotting factors and elevated levels of female hormones estrogen and progesterone.
D: actually there’s a writer Sarah Ruhl are you he said price range she just she had a Bell’s Palsy. After twins and mine did was like over the course of the three plus days, but that was another sense of like, my body has been through some really extraordinary like that and that sense of like am I gonna be back to normal, whatever normal is.
P: Yeah, that seems terrifying. And another thing I’m interested in is like you my first pregnancy. Delivery involves a lot of trauma and we have a second child. Yes, and how to walk into that is different for everyone. So, so share with that was like how do we Why don’t we have a second one?
D: I know. I know. I mean, I guess the reason like you think why would you ever want to do I mean I started research include camp clam Sia, I went to see how often it was that you it’s actually more common in first pregnancies. And like I think I read the statistic around repeat preeclampsia. I’m not gonna able to quote it now and maybe it’s different.
P: The risk of developing preeclampsia in a second pregnancy if you had it in the first depends on when you had it in the prior pregnancy, how severe it was additional risk factors that you might have to just give a sense of the numbers and article and British Medical Journal using a giant sample found that the risk of preeclampsia in any pregnancy was 3%. The risk was 4.1% in the first pregnancy and 1.7 and later pregnancies during the second pregnancy. The risk was 14.7% for women who had developed preeclampsia, and then first pregnancy and 1.1% for those who had not
D; when I did get pregnant the second time and it was like another sort of accident. Ava was I think around 13 months like my kids are less than two years apart. So she was maybe yeah, 14 months when I got pregnant. I was still not menstruating like I was nursing a lot I think I thought it was going to be really hard to get pregnant because I wasn’t it was so there I was pregnant again. And I was like yeah, I’m gonna have a VBAC. You know, like redemption story, and actually a nurse a visiting nurse who’d come to look at my C section scar. And we haven’t even talked about like the C section recovery, which was like really long and arduous but she was like, Yeah, you can always have a VBAC. She kind of said it offhanded and I felt like that was such a, you know, a lovely seed to plant but I the local hospital, like they wouldn’t see me there. I was considered a high risk pregnancy. So the only prenatal care and like the only place that would let me deliver was at a hospital over an hour or like an hour and 15 away. So that’s where I had to go because they specialized in high risk. Pregnancy.
P: If you’re not at high risk to develop preeclampsia, what what are we worried about? I mean, maybe I was at higher risk.
D: That’s a good point.
P: I’m not I’m not contesting I’m just asking.
D: No, I think also the fact that I wanted a VBAC.
P: Yeah,
D: I think it’s I’ve been willing to have a planned C section. We could have done it at the local hospital. Yay. In a chilled out way. And let me tell you, I actually looking back I’m like, That actually sounds pretty relaxed ish. Maybe I should have done that. But I really wanted to try for that feedback. And so I needed to go through these people, you know, the providers who were kind of specialized because I think I think it was more about the the I think the risk of of rupture during you know, that’s what they’re worried about,
P: especially if it’s not if it’s less than two years apart, right?
D:Yes, exactly. So they’re, they’re all these things. It wasn’t just a was a VBAC. It was said maybe the history of preeclampsia but then it was also the close together and
P: was your first C section. Is it horizontal? Is that it’s horizontal?
D: Yeah. But, you know, I’ve sort of learned some things about C sections. Definitely the ones that are like fast and urgent or refer surgery my body, right. So for Carmen my second, it was also an August I did certain things different during that pregnancy. They didn’t want to let me go beyond 40 weeks for whatever reasons it was about the chances of preeclampsia start increasing after that 14 week mark. And I did a lot of different things like acupuncture and rosemary Evening Primrose oils and like, all the different things herbs to try to get things ready. But Carmen came right on her due day and I think I had a I had like the checkup prenatal checkup like right around that time. I think they might have done like they swept the membrane, that membranes and then I basically like went into labor. So I didn’t need the kind of induction that I did with the first baby. But I actually had an amazing I did a different Hypno birthing class with a different teacher who knew the full history of trauma. I also had a therapist who I had done a really cool technique on trauma processing called EMDR. Without that, I don’t think I would have been prepared to go into labor again, given how scary it was. So I you know, it was a more I don’t know, like maybe a more normal progression, things went faster. When you try for a VBAC. You have to wear the belt the entire time. So you are being monitored. There’s a lot of precautions. And basically, I I got to a certain point it kind of stalled. Carmen was in that same position, that occipital posterior and later a midwife would say, yeah, there’s probably something about your pelvic geometry. That is why your babies are in that position. And I didn’t even know that was a thing, but there you go. That’s nothing I could control.
P: Yeah.
D: But you know, I was like, probably, I don’t know, like eight centimeters and I was really tired. And then I was like, I want an epidural. My fears around the same interventions were totally gone in the same way because I saw what had happened before. So I kind of went to sleep because I was so so tired. And during that time, I basically fully dilated and started feeling the need to push which I’ve never gotten to the first time. So I kind of woke up out of that sleep and I was like I need to push I need to push and it was exciting. And then like it was like I’m doing it this time like this, you know, I was ready. I’m gonna like push this baby out. Like I Hypno birthing like everything. And then you know, I had this big monitor on and the baby’s heart rate went way down to like 30 or something and it stayed down and all the alarms and buzzes are going off.
And then it goes way up, and it starts doing tech cardio doing like up and down, up and down, up and down. And they called in the big guns. And it was like, something’s not right and when you’re having a VBAC and something like that happens, they don’t give you another chance. I was like, I’m like, Come on, I’m ready to push like I want to do this and they’re like, they’re afraid of a uterine rupture and that’s why the baby’s not okay. And at that point, they rushed me like I was naked on the bed. They got me on a gurney and they ran me down the hall naked to the O R. And they’re like, We need to get this baby out now. And I was I was like, no, no, please let me try like I want to push her out. And they kind of they checked me one more time and there was like a tiny lip of cervix which hadn’t like fully dilated, and they’re like, it’s gonna be too long. Like it’s gonna take too long for and the baby’s in distress, and we can’t risk it.
And that was that and they same thing they put me under Tim wasn’t allowed in. It was a very fast, very urgent, very scary emergency C section. And I had a great doula at the time. In fact, it was the same woman who had been a nurse who had said you could always have a VBAC. I’d asked her to be my doula. And she was like they were outside. of the window. And I feel like they kind of put me under still like, protesting like, let me keep trying. And my Doula was like, I saw your C section. It was really rough. Like there was a lot of blood, you bled a lot. And here’s the thing that happened, which again, didn’t know could happen. The surgeon cut my baby on the face with a scalpel.
P: Wow,
D: she was faced up again. So Carmen was born with a cut on her cheek. And the first pretty much the first thing that needed to happen to her once she cleaned up and everything but before she was given to me to nurse in the recovery room was she had to go to the plastic surgeon and she had like four tiny stitches on her face.
P: Wow. I have never heard of that. wow.
D: I was me when I finally heard about that. I was really angry. It was like, what was that doctor doing? You know? Anyway, I actually asked like in my six week chair, I was like, I want to talk to that doctor. I want to ask her what was what that was like, what happened? And that I never got the opportunity to do that.
P: But now do we think it was just a frantic rush to get the baby out?
D: Yeah. I mean, who knows what was happening? how long she’d been on for where she’d been on call for whatever. It was late. It was 1040 1035 at night. You know, I don’t I don’t know. I mean, people are human. There’s error in anything ADA. But that’s a pretty big errors to cut a newborn baby when you’re delivering a C section. And yeah, I mean, when we talk about birth trauma for our babies, you know that to come into the world that way for sure. So I I made sure like after we got home and everything I got like cranial sacral treatment for Carmen. She then she went on to have like, extreme colic like she would scream and scream for hours and I always felt like some of that was connected to like a really traumatic birth.
P: Colic sounds unbelievably hard, and I think it’s hard for people to understand just how difficult it is to live with a colicky baby unless they can witness it.
D: Oh my gosh, yes. She used to come down outside. And it luckily she was born in August. So it was like summer into fall that this was happening. I mean, it went on for like I want to say like for at least four to six months, like Oh, four months like I would walk around the neighborhood and sometimes I’d be walking her and she’d be screaming Unknown Speaker 0:02
meaning and I’d be like wondering if the neighbors were going to call like Child Protective Services. And I would be like, I’m trying to comfort my baby and I was totally powerless. Eventually she fall asleep and then I try to transfer her really carefully to like the little tick tock swing from my like baby carrier, and then maybe she would like sleep for 20 minutes and then she I mean, it was that was its own thing. You know, now she’s a fierce and incredibly healthy 14 year old varsity ice hockey player. Like she’s a very fiery Leo. You know, I think sometimes I’m like, Oh, that was just kind of her fire that we were. We were seeing that was she was expressing in that in that kind of first first few months of her life. I mean, somehow we made it through but I will say my recovery from that C section. I think if you have a planned second C section, and they kind of carefully go through the same star, like I almost have like two stars, that kind of cross. It was
P: oh wow.
D: Yeah, I mean, I’ve also had like a pelvic chronic pelvic pain condition which I had had before getting pregnant the first time that kind of came back, which I think was connected to the surgeries and trying to heal and all that scar tissue there. So and you know, so that’s when we started like, did you want a big family? You know, I knew that too. That was all my body could take. Yeah, yeah. And there was a lot of grief there. My sister just had her third baby a few months ago, and I really, you know, I felt the heartache. I mean, that’s over for me. I’m in my late 40s. I’ve two beautiful teenagers. I’m really grateful for the family I have but there’s always that sense of oh, what is or you know, it just it wasn’t my karma not for this life.
P: Yeah, it is. It is a hard thing to let go of, and we were in the same boat or we wanted a big family and it was too because of all these physical things that happened. So it is it is hard. To hard but makes sense to hold both like the gratefulness for what you have some sense of loss
D;loss, I think the loss is real and I that’s really why I’m grateful to you for having this podcast and holding the space for women mothers, I don’t know do you have dads on here too or is it just women?
P: So it’s funny I have it is just within and I tried to get most of the experts to be women because it’s yeah, I want it to be kind of women’s voices. But I was suggesting to my husband that maybe I would interview him about our birth story and he was like, Absolutely not. 0% chance.
D: That’s what my husband works. I mean, he the first birth he describes as hands down the most terrifying experience of his life.
P: Yeah,
D: I mean, he no one was telling him anything. He fully thought that I was gonna die. Maybe our baby was gonna die and he was just gonna watch it toddler Don’t be by myself. Waiting for tins are watching and I didn’t know what it was but it was the episode daughter those until April. In literally she dies.
P: Yeah. Yeah.
D: It is one of the most riveting fighting scenes like a television show. Talk about pts. Like I really did some trauma because it was so activated was like I felt and I think I understood like the day if it had been 100 years ago for me, kind of in 2005 that had been 95 There was no mag sulfate yeah and been in a hospital that would have happened like they saved my life in a way that seemed that helped me put aside my what ifs. I had a good friend at the time who had a C section and went on to have a very empowering VBAC and wrote about it and I felt a lot of jealousy and like, sense of failure. But I also just felt watching the worst case scenario play out on Downton Abbey. That actually helped me to just feel odd what I’d been through survived and like gratitude for the medical care that saved my life and like gratitude that I have these had these like strong, healthy, thriving babies, you know, because like, Isn’t that the most important part?
P: Yes, yeah. easy to lose track in the 10 months of getting there, but that is the ending we’re all looking for. Yeah, also, it was really interesting for you to watch a thing that you were kind of not present for right so now you can see everything your or some version.
D: Find and selfie and various and hallucinating so it was with all my faculties observing. It was really shocking. Yeah, that was really interesting. And so here’s like, the final thing is that I did get pregnant again
P: Wow.
D: Accidentally flare up of my chronic pelvic pain could come back and it was really ideon for years, I guess, since Carmen’s birth. That was our birth control. And I became convinced me to do everything to relieve where I was with this plane failure, which was really scary and I got the idea. And Tim scheduled a vasectomy lesson that was like the best and most compassionate thing that a man could do, especially to a woman who’s been through the kind of pelvic traumas that I have, but there was a window of time between the IUD coming out and we use some condoms. I don’t know. It has easy for me to get pregnant. I thought it’d be really hard to get pregnant at age 40.
P: Yeah,
D: it was not. And I got pregnant again. And we I had to make that decision. But it was an agonizing I understood that I would have needed a third C section. Like no one there was no not going to be a VBAC. I talked to the doctor about it, a third C section through that scar tissue which had already was in in rough shape, and hit I was already trying to treat the scar tissue to try to help with the pelvic pain. And I just knew I had like a very deep level and I talked with my doctor that like my body couldn’t really go through that or maybe it could but there was going to be a real cost in the long term for my health. And that was the decision I made and I was able to do like a medical, a chemical abortion like at home where I took the two pills and it was like just induced a miscarriage, and it was much less traumatic. than that first experience. When I was a teenager, I knew it was the right thing. And never looked back. I was just very grateful that I had access to that kind of care and could make that decision with my health care provider. So yeah, but so a lot of what ifs you know, sometimes I have because that would have been I would have had a baby like in 2014. So I would have a eight year old now, you know, so there’s definitely that. I’ve had some moments of that. But when I come back and get grounded in my body, and I almost like visualize what what’s going on down and then the C section scar and like everything. I just just like that was my limit. That was my limit. Were those those two babies, those two pregnancies, and those two surge emergency surgeries and I knew I couldn’t have gone through it again.
P: Yeah, I mean that that sounds wildly reasonable, especially since now you look at the two kids you’re responsible for right to say this becomes a bigger a different decision. I think. I think it’s most common for people to have abortions if they already have kids.
D: Oh, really?
P: So I think yeah. Okay, to be more clear about the abortion statistic according to the Guttmacher Institute, a research organization that focuses on reproductive health policy 59% of abortions are obtained by women with children.
So I think many people are making that calculus, right. What what’s cost and what can I do and now it’s not just me and it’s not just my partner. It’s yeah, it’s this family that we’ve already created.
D: Totally. And I mean, let me tell you, I don’t know what your teenage years are like, but like, we’ve gone through some intense stuff, past few years. And it’s been, I mean, at times, it’s brought me to my knees again and the ways that
P: surrender Yes, right.
D: So yeah, I’m not trying to say like people have more I mean, I think whatever you given what you can handle maybe but like two was what I could handle, you know?
P: Yeah, yeah. Yeah. Yeah. Well, that’s an amazing story and I am grateful for your good ending there.
D: Okay. Thank you. This was really cool. I like how you kind of, we kind of made a full circle.
P: Yeah. Thanks so much for coming on. Thanks so much today and for sharing her story. We didn’t get to talk too much about her writing, but I’ll link to her website in the show notes at war stories from the wound.com and you can check out our work. Thanks also to Dr. Alessandra, are insights about preeclampsia and blindness. Anyone listening to this story can relate to the fact that pregnancy and birth are complicated processes that really require flexibility and more grit than you can imagine. So many things happened in Diana’s two pregnancies and we only focused on the most dramatic aspects. We didn’t spend one minute talking about recovery from the C sections, and how challenging it must have been to have these difficult births close together in a period of intense childbearing. Her resilience and her partner’s resilience are really are really just inspiring. Thanks for listening. We’ll be back next week with another amazing story.
Transcribed by https://otter.ai
Episode 62: Suddenly Blindness–a Run in with Preeclampsia: Diana’s Story, Part I
Episode 62SN: Suddenly Blindness–a Run in with Preeclampsia: Diana’s Story, Part I
Today’s guest grew up with a mother who is something of an earth goddess, meaning that she was involved in a movement toward empowered birthing long before it’s a main cultural current. So the seeds of an idea of what a birth should look like were planted early in my guests life. In the course of her first delivery, preeclampsia fell on her out of a clear blue pregnancy–one that was normal and healthy up to that point. This condition can come with insults to any number of organs, and in her case it dramatically affected her vision. She was struck by blindness. Her story of coming to terms with the differences between her image of this process and the actual process is inspiring and so too was the way she and her husband managed the large number of obstacles they met along the way to creating their family. What follows is part one of her story. In part two, which will be released next Friday, the ninth we’re joined by a neuro ophthalmologist who explains what’s going on physically when preeclampsia includes blindness.
To find Diana’s writing, click here
Prodromal labor
https://www.healthline.com/health/pregnancy/prodromal-labor#seek-help
https://www.webmd.com/baby/prodromal-labor-overview
Audio Transcript
Paulette : Hi, welcome to war stories from the womb. I’m your host, Paulette kamenecka. I’m an economist and a writer and the mother of two girls. Today’s guest grew up with a mother who is something of an earth goddess, meaning that she was involved in a movement toward empowered birthing long before it’s a main cultural current. So the seeds of an idea of what a birth should look like were planted early in my guests life. In the course of her first delivery, preeclampsia fell on her out of a clear blue pregnancy–one that was normal and healthy up to that point. This condition can come with insults to any number of organs, and in her case it dramatically affected her vision. She was struck by blindness. Her story of coming to terms with the differences between her image of this process and the actual process is inspiring and so too was the way she and her husband managed the large number of obstacles they met along the way to creating their family. What follows is part one of her story. In part two, which will be released next Friday, the ninth we’re joined by a neuro ophthalmologist who explains what’s going on physically when preeclampsia includes blindness.
Let’s get to the story.
P: Hi, thanks so much for coming on the show. Can you introduce yourself and tell us where you’re from?
Diana: I am Diana Whitney, and I live in Brattleboro, Vermont.
P: Oh wow. That’s cool. How far are you from a place I would know how far are you from the Capitol?
D: That’s a good question. We’re at the very southern border of Vermont. So like the little stuff called the banana belt for people who go up to the mountains.
P: Oh, nice.
D: Three hours. from Burlington.
P: Oh, that sounds lovely. We’re here to talk about family. So let’s talk about your family. Did you grow up with siblings?
D: I did. I’m the oldest of four and my mom was sort of an earth mother type She was tall and radio with long flowing red hair. A hippie if you will. She got married barefoot in 1969 went to Woodstock. And my parents lived in England in a cottage for a while I was born there. My mom taught childbirth classes when I was little Yeah. So she actually studied with she like hit singer who was sort of a pioneering natural childbirth teacher from when my mom lived in England. And Sheila and her books and her natural childbirth theories were really influential for my mom. we lived in Washington DC when I was little and in the evenings these huge pregnant ladies would come into our house you know, so this was in like, the 70s and early 80s. And I remember kind of being on the stairs looking through the banister. And there is you know, my mom resplendent and they were all sitting on pillows in the living room and they were learning about about natural childbirth and Lamaze breathing. So I kind of give this because I like to say that important to my own birth story was was like a very idealistic vision of childbirth that I think was planted in me really young. And then the other thing that was really influential is that when I was 10 years old, so I was the oldest. My mom was pregnant with my sister. And my sister was accidentally born at home and in a in a wilderness cabin in northern Maine on the Canadian border.
P: Wow.
D: Yeah, and it gets better by by candlelight during a northeaster when the power went out.
P: I was just gonna say delivered by an elk?.
D: I mean, you know, my grandfather was there who’s MD But he was a psychiatrist so you know whether he’d ever delivered a baby but my mom as a former birthing instructor, and someone who had already had three babies, basically they they knew they couldn’t make it. The hospital was like over an hour and a half away and given the storm, they knew they couldn’t make it without having the baby in the car. So
P: Wow.
D: Yeah. So it wasn’t a planned homework the way you hear about it now where if they’re siblings, they know what is up so we were upstairs and I remember listening and being scared and kind of falling asleep and anyways and then meeting my newborn baby sister by candlelight, just after midnight on August 9, and it was incredibly beautiful and miraculous and romantic. And I think that was kind of the origin of my very romantic vision of childbirth.
P: I was gonna say it’s a double edged sword to have a mother who’s like an icon. Yeah, I mean, it’s amazing to have those experiences at the same time. It’s a pretty high bar.
D: It was and I didn’t even understand it, you know, because then life went on, and my mom didn’t think about herself in that way. But I think it was being able to give birth like that is a kind of superpower right? I think a lot of women could I don’t even what I’ve been through now like that, to me. It sounds really terrifying. But But she did it. She was amazing. And that some of the photos we have of like right after birth are holding the baby. It’s, you know, with my dad there. It’s just incredible.
P: That sounds amazing. And I’m guessing coming from that context. Also, you imagined you’d have a family.
D: I did… we were really close family growing up, you know, so it was me and two brothers, and then my little sister, you know, and so I babysat and kind of Yeah, just always thought it’d be something that I would do. And in in college, I remember saying, Well, I’m going to have three kids. That’s the perfect number. Four is too many, too. They just fight with each other out and I had all of these, you know, the way you do when you’re like, 20 that you think you have the world figured out, but as life would have it, you know, there was there was not it was not possible for me, given my physical limitations and what I went through with both of the births of my two daughters that I could have had a third.
P: I also said six and we have to so I hear Yeah, that’s a common you know, who doesn’t want camp at their house all the time?
D: Did you come from a big family?
P: I’m the third of four.
D: :Okay,
P: and we’re you know, three of us are really tight together and my little sister’s eight years below me, she’s the best one by far. So I think what would happen if we continue the line? So I’m sympathetic to this. So you you’re walking into birth with this very idealized and beautiful oily so before you got pregnant the first time was it easy to get pregnant?
D: Yeah, I mean, let’s be honest. Yeah, I I was really blessed with fertility. Actually got pregnant accidentally in college with my boyfriend who was very serious with and you know, had to make the hard but necessary decision I was 19 to terminate and think I learned then how easy it was for me to get pregnant. And that was a trauma that I had to heal from. And then when I did I got married. We don’t want to stop here for a second.
P: Do you want to walk fast by that one?
D: No, I can talk about I was sort of like, oh, I don’t know who your audience is. And I don’t want it like if there’s like anti choice people who are gonna be like, pissed about that. You know, I think as long as we talk about respectfully, it is right or no, and I actually I just testified in front of the Vermont House of Representatives about it because they’re voting on a reproductive rights bill. So it’s a story that’s very open that I’ve written about. I was really lucky because I actually had a really wonderful, supportive, loving boyfriend, who was devastated and scared and looking out for me, and we’d made a dumb mistake. I was using a diaphragm and he’d come to visit me over the Christmas break. And I’d left it at school when there was a big snowstorm and it was like, Oh, should we drive and buy some condoms? Oh, we’ll be fine. It’s just once you know, it was that sort of invincibility syndrome. And it really was like, the one time and then I felt so stupid. And yet, I had people around me giving reassuring me that I was human. That it like not to blame myself. I told my parents I mean really had amazing parents. So I called them and told them and they were supportive, and they paid for it. I mean, all of these sort of shame pieces that the culture puts in that I could have experienced from my family. I didn’t. And then the health care that I got at the local hospital was amazing and very compassionate, which is really what every woman every person deserves, is to have like compassionate care as you’re trying to make a make a really painful choice or B goes through with, you know, a painful procedure. I went to a lot of therapy to help with it. I’m a writer. So I actually wrote a lot I wrote poems, I’ve written essays, and that sort of helped me move through. And I did sort of rituals on my own. I mean, there’s there’s a whole story about what happened because actually the college when I was looking for when we were looking for a pregnancy test to confirm the one we’ve taken at home, the college health center didn’t have any pregnancy tests, which come on
P: that’s bizarre
D:. I mean, that’s, yeah, like 5000 college students. So it was sort of a fluke. And they actually sent us to one of those crisis pregnancy centers, which was its own crazy experience in New Hampshire, where they tried to where they told me the due date of the baby and told me about prenatal vitamins. And so that was its own really weird thing. I just feel so lucky that I was. I had those supportive people around me. And I even like I told some of my friends, my closest friends. I was a varsity ski racer. I had to tell my coach, she was supportive. She told me to, you know, take the time I needed but she believed I could keep going with my season. So like, I was really privileged. I’m really lucky. And so I don’t feel like I carried around this burden of of trauma. You know, I think that said, I felt like I needed to be very respectful about around my fertility. So then when I got married in 2004, and it was only a few months after that we got pregnant and it we weren’t really trying. We weren’t being super careful. But we were, I don’t know doing some kind of loose rhythm method II thing, you know, I’m not, you know, having intercourse during the fertile times, but obviously it didn’t work. So I I got pregnant, not sort of trying hard. And I was I was 32 when my first baby was born.
P: Wait, so let’s talk about that pregnancy. Yeah, you get Pregnant Easily and then and then. Are you imagining that you’re going to be like floating on a cloud all nine months?
D: Yeah. Yeah. So I actually I had a very healthy pregnancy, like I really was, you know, I had the usual morning sickness, see nauseous stuff, but I stayed very active. You know, I was a ski racer and a lifelong athlete and I stayed active. I was a ski coach. I kept hiking and skiing and and I sort of jogged as long as I could, but then I, you know, I just I kept moving and kept doing yoga. I’m also a yoga teacher. And I really believed that those things that I was doing, were going to guarantee me that there was going to be an equation like, you eat healthy. You do all the exercises that are good for prenatal women. You read the books, you read the right books, and that will equal this natural birth. That you have dreamed of. And let me just tell you, like, that’s not true. I mean, I learned that birth is a mystery, and there are no guarantees and there’s no formula and that because this was something afterwards that I wrestled with, I blamed myself for so long. I went back over and over what if, what if I done this? You know, the books that I was reading during pregnancy? Some of them were she looked like the ones my mom had given me. Sheila kids singers guide to natural childbirth. Oh, I read ina may Gaskin spiritual midwifery and all about those women on the farm in Tennessee who have these natural blissful births. They may be even orgasmic during labor. And then I took hypnobirthing and I was in a class that I joined here in Brattleboro, Vermont called Conscious pregnancy, where we did art projects and visualizations, and it was very beautiful. It was very idealistic, and it frankly was total bullshit when what happened to me ended up happening. There was nothing nothing from that class that actually prepared me for the reality of what happened to my body.
P: Well, biology is messy, right? That’s like, that’s what we learn. I like the way you described the equation because I think that is exactly how most of us are thinking about it. I do a and b and I will get C and that’s how it works. And it may be that you have a better chance of getting C if you do a me but you still don’t know where are you as an individual. Why in that whole, the realm of possibility.
D: Right. And I think one of the big things that I think a wise midwife told me at some point was the experience of of motherhood is one of surrender. And that is you know, that may have that happens in your pregnancy. It happens during labor or it happens with your you’re trying to nurse your newborn or deal with colic or your toddler or your teenager like it’s gonna happen, it’s gonna bring you to your knees and you’re just gonna have to surrender and be it face that you’re out of control at some point. And I think for different people, different women, it happens at different stages. And I think, for me, my pregnancy really did was pretty damn great. And so I yeah, I think that’s why I was so blindsided. And that’s an interesting word because of what ended up happening. But there’s one other piece that was really important to what happened is that my baby was due I think her due date was like August 14, and in early July, my dad died suddenly of a heart attack. So this was my beloved father. My family very, very close. He was he was just turned 61 So I was actually at conscious pregnancy class in the evening like doing the painting exercise or the visualizing the green light, healing light or whatever it was, and the phone rang. They found me there and it was my I don’t know who calling from the hospital to tell us my dad was dead. So everything that happened in those last I think it was like five weeks so I was probably like 34 weeks, maybe, maybe maybe more 3435 weeks. But that last like month of my pregnancy was absolutely suffused with the experience of shock and grief. And there’s no science. There’s no obstetrician who can prove that there was a connection between my dad’s death and what happened in my labor, but I know I know and actually had one like one of the doctors who hadn’t attended my birth but who was like talking to me at one of my follow up appointments and I wanted I said, why why did this happen to me? And we talked about what happened with my dad and he he kind of said something like that, that we can’t draw an exact correlation. And there’s nothing about preeclampsia that. I mean, it’s a mystery to science. But he said but you know, inside of you that there is a connection.
P: Yeah, I’m so sorry about your dad. That does sound shocking. And it’s hard to imagine that something that’s that powerful wouldn’t have an effect somewhere
D: some effect, right. I looked for reasons for so long afterwards. And at this point, like, you know, almost 17 years it’s sort of just you know, come to an acceptance about that was my particular karma to have kind of birth.
P: I also think my birth was visited by many mysteries as well. And it ultimately it worked out and everyone was alive, all good, but that wasn’t obvious for many months that it would have been that way. But I think this search for a reason, at least in my case was even though I can accept, I can accept intellectually that I have no control. I think viscerally my attempt to try to get a story that makes sense about how this happened is some attempt to feel like oh, it would have been impossible to control it if I had known because real, like bodily acceptance of the fact that you have no control is a tricky thing to manage.
D: Absolutely. I mean, we do have aspects and that’s why we study the breathing and birthing positions. And there is an aspect right that we can bring our our awareness of our bodies into this experience, right? But then, like you said, there’s there’s a whole host of other factors and biology and so another thing that feels important to me when I talked about the conscious pregnancy and the hypnobirthing that I was taking, is the the sort of culture I was living with in here in Southern Vermont. In hippy crunchy I call it like more organic than thou the it has shifted. Now I feel like maybe I’m also just give less shits, because I’m like a woman in my late 40s But then in as a brand new pregnant. You know, I felt young and naive and starry eyed and I was a yoga teacher and I was into, you know, rituals and and natural, natural and the whole culture was so frankly so judging about any kind of intervention that a woman might have in her labor experience. So everything that I learned not just from reading Ina may Gaskin but from going to these classes or talking to Inishowen, I wanted to have a homework. I up until the point where my father died. I was planning a home birth with a tub in my living room for my first baby and I heard all these ecstatic stories of women who did that and that to me seemed like I mean, it sounds so ridiculous now, but it seemed to me like the crowning glory of like the divine feminine power is like to push out a baby through your vagina in a tub in your living room. And the exact opposite end up happening for me.
P: although I’m gonna stop you there for one second to say it’s, I think the first part of what you were saying still holds true.there is something divine and unbelievable in the act of, you know, birthing a baby carrying a baby all that stuff.
D: Yes.
P: Whether it gets you to the 11th level of heaven in a tub in your living room result is each person has experienced but so take us to the How do you know today’s the day like take us to the birth?
D: Yeah, well, I so I had decided after my dad died and the midwife sort of flaked out. She was like, Oh, I think I’m going to be traveling around your due day and here’s my backup midwife. And I at that point was like, I need to know who my people are, you know, my dad just died. So I switched to a birthing center at the local hospital which also had broken tabs. So that was important. But what happened was, my due date came in went. And I was huge. it was late August and it was like hot and sweaty. And then people kept calling on the phone to ask if the baby was there yet. You know my mother in law, my mother and I didn’t want to see anyone. I was so grumpy and I wasn’t sleeping much as at the end of pregnancy. You know, it’s really it was maybe a combination of discomfort and being enormous and hot. And maybe also really impatient for the baby. So I kept going and I was so had been basically warned not to do any sort of intervention, any kind of even mild induction you know, just wait natural, natural natural. And then we got to this point, probably like over a week past the due date, where I would I went into what felt like labor at night, and the contractions are pretty strong. Like coming like three minutes. Apart, not able to sleep, having to breathe and do all the stuff during them. And then when we were like okay in the morning, we’re gonna go to the birthing center and this is it and then during the day, it would just stop and this is what I mean by like nothing in my birthing classes prepared me because I did not know that that was a thing. And there is That’s true. It’s called prodromal labor, I guess. And that went on for almost five days.
P: oh Wow.
So prodromal labor is quote, real labor and that the contractions are real and very much like the contractions in active labor. But in this case, the contractions start and stop and they don’t cause changes in the cervix. In active labor. The contractions are opening the cervix. We don’t really know what causes prodromal labor and its arrival doesn’t necessarily mean that active labor is on the near horizon. It can come a month before the baby is born.
D: So during that time, I could barely eat and I wasn’t sleeping and I was getting weaker and weaker. And I was really scared and confused. You know and this is where the what ifs come in. Why didn’t she go to the hospital and maybe get an induction she’s 10 days pass or you know well, it was almost 42 weeks, but I was so frightened. And I’d had the like fear of God burned into me about Pitocin or whatever the like these dangerous things were that were going to result in an intervention and a C section and all these horrible outcomes. So I didn’t I didn’t. And then I actually was on the phone with a midwife who had taught me the Hypno birthing and she wasn’t my midwife.
And she said, I’m really getting scared for you, Diana. You’re not sleeping and you’re just at the beginning of this. You need to eat and sleep and gather your strength and like you should go to the hospital. And so I went and I think what they did was you know, they checked me out to see if I was dilated and maybe it was like one or two centimeters but like really not things had not really gotten going. So I think they gave me like they actually gave me a sleeping pills so I could sleep a little through the contractions and then they did an induction they did a something called cervadil which I didn’t even know was a thing. It’s you know, the little cert you know, put the stuff on your cervix. I kind of slept through it I think maybe and and now when I think back I’m like that if I had done that five days earlier, like who knows I was so exhausted by the time things really got going.
P: Yeah,
D: but that did get things going. So there we were, and we were in and out of the job. And to be honest, I don’t know how other women like I don’t know if you remember I my memories of that birth are very blurred. Maybe it was due to just the sleep deprivation for like the days leading up to it. Maybe it was just in the zone. But what happened was I had the baby was what they call op or sunnyside up occipital posterior, which was also not really a thing that I’d known about was that your baby could be in a position, which means you’re gonna have excruciating back labor and things aren’t gonna progress.
P: Yeah.
D: So I was like they said I was doing great and they kept checking me and I was like only at six centimeters you know? And they’re like your baby sunnyside up. You have to go try to shift her otherwise this isn’t going to progress. And I don’t know how many hours we’ve been at it. I mean, but basically this is the culmination of like a whole five day thing.
PI’m not sure what shift her means. What does that mean?
D: they were they told me to go out and stomp up and down the hall.
You know in my I was delirious to try to get the baby to roll or something. You know, I guess she wasn’t low enough yet that so her she wouldn’t be like face up.
P: These seem like crazy instructions for someone in your situation like they might as well have asked you to go jump rope.
D: Like exactly. I know but I was like okay, you know, because I remember they kept checking me like still only six centimeters like it was stalled stalled stalled. This is why it stalled because your baby’s in this position and the thing about back labor, which you know, I learned after this whole experience that this is very similar to what my mother had with me.
P: Oh, wow.
D: Like she never told me that after I gave birth and she said yeah, you were occipital posterior. You were sunnyside up. I had back labor. It was excruciating. That was the word she used.
And this is what goes unsaid between mothers and daughters because there’s me right in the candle light with the homebirth baby and reading the Sheila kids singer and like thinking my mom was this goddess and her first baby. I was a low forceps delivery in 1973 She says she knows that if she didn’t give in in England if she had given birth in like the US today I would have been a C section no question.
P: Yeah, yeah,
D: you know, anyways, you know, I came out with my head all squeezed from the forceps. Yeah. And she she tore like that she just ripped her whole perineum after that forceps delivery. I mean, she said it was excruciating. So I’m not. I kind of wish maybe you don’t you can’t tell a woman that ahead of time.
P: This is a good thing that I am trying to get to the heart of in kind of recasting the narrative of what pregnancy is, is like and includes for people who you know, for your your daughters or my daughters.
I want to inform without scaring you to say like this is a panoply of things that might happen or none of that happened but but just don’t be a you may have felt differently if you knew Oh, back labor is a thing. And it’s really challenging and like it’s supposed to suck like this much. Right,
D: right. And even I feel like that sort of glorification of natural birth which was in my community. For example, when my sister had her first baby. She was at a different kind of community in San Francisco, like a more urban one. And I don’t know, she just was like, oh, yeah, and then I got my epidural.
P: Yeah.
D: Like here that was considered failing. You know, going down this terrible slope of interventions, like, you know, they’re just so many choices that I felt like I wasn’t presented with maybe because of this idealization of a natural labor, which for all the things that were going on with my body, so the position my baby was in…. So so let’s go back to the chronology, they told me to go stomp down the hall, you know, and it’s late at night. I’ve been inactive laborers, you know, for at least 12 hours, maybe longer, but also I’d been in that prodromal labor for days of contractions that stop and start but literally very painful contractions. They just weren’t doing anything. And I’m stomping.
And like, half naked I mean, I must have been looked absolutely insane. And then I went blind. I couldn’t see
P: out in the hall while you’re stopping. Yeah.
D: And I started screaming. I can’t see anything I can’t see.
P: I’m going to stop the interview here. Midway through Diana’s story. At this point, she’s fully and completely left the realm of a delivery that bears any resemblance to her expectations. Preeclampsia affects five to 8% of pregnancies. And as it did in Diana’s case, it can come on suddenly. It’s hard to fully appreciate the extreme stress Diana and her husband felt when she lost her sight.
Many women seem to have encountered high blood pressure on the way to preeclampsia or other things in pregnancy report that having high blood pressure doesn’t really feel like anything. So even though it’s dangerous, it doesn’t feel scary in the same way that complete
so even though it’s dangerous, it doesn’t feel scary in the way that complete vision loss would. Even when the doctors told her she had severe preeclampsia, the uncertainty of how her case would develop loomed large: if she’d regain her sight, if the baby would be okay, if she would be okay were unknowns for long enough to leave a lasting impression. Pregnancy is often referred to as a stress test, and more often than not I’ve thought about this in the context of the physical challenges of pregnancy but Diana and her partner experience a whole other dimension. It’s an important story to hear both to recognize the amazing resilience and grit Diana displays, and to better manage our own expectations of all the things that pregnancy can contain.
Thanks for listening. We’ll be back next week with the conclusion of this story and commentary from a neuro opthalmologist.
Episode 60SN: Managing Abortion and Postpartum Depression as a Psychiatric Nurse: Nina’s Story, Part I
Today’s show features a guest that can give us some perspective on the current climate around two important topics: abortion and postpartum depression. She’s a psychiatric nurse practitioner, who experienced an abortion in the 1970s and peripartum and postpartum depression in the 1990s. She’s written about her experience. In a piece, titled “No Stranger”. Here are some excerpts from her writing. First, she writes:
“How do you know?” the patient might ask. I lean forward a bit in my
office chair, a magic mix of science and empathy, or so I would like to
think. The woman sitting across from me may be dabbing at her eyes
with her fingers. If her nails are chewed to bloody shreds, I will fold my
own more tightly in my lap.
“I’ve been a nurse practitioner for a long time,” I will say. “More
women than you think go through this. It’s hormonal…”
And a little later in the piece she writes:
Early on I figured that postpartum depression was
a risk for me, but expected I could balance my emotional happiness and
stability against my physiological tendency towards clinical depression,
if I was ever so lucky as to get pregnant. And besides, I was a
professional. With training and resources.
So here’s the thing with training and resources: Depression robs
you of the clarity to use any of those skills or supports.
One note to add: I’m changing the format of the show a little: sharing people’s stories in more manageable pieces. So you’ll hear the front half of the story right now, and the back half next Friday…and with that, we’ll get to the story
You can find Nina’s published work here
Information on the newly approved drugs for postpartum depression
https://www.zulresso.com/about-zulresso
This episode includes the interview with the UNC MD researcher working on PPD drugs
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 show features a guest that can give us some perspective on the current climate around two important topics: abortion and postpartum depression. She’s a psychiatric nurse practitioner, who experienced an abortion in the 1970s and peripartum and postpartum depression in the 1990s.
P: Here are some excerpts from her writing. First, she writes:
“How do you know?” the patient might ask. I lean forward a bit in my
office chair, a magic mix of science and empathy, or so I would like to
think. The woman sitting across from me may be dabbing at her eyes
with her fingers. If her nails are chewed to bloody shreds, I will fold my
own more tightly in my lap.
“I’ve been a nurse practitioner for a long time,” I will say. “More
women than you think go through this. It’s hormonal…”
And a little later in the piece she writes:
Early on I figured that postpartum depression was
a risk for me, but expected I could balance my emotional happiness and
stability against my physiological tendency towards clinical depression,
if I was ever so lucky as to get pregnant. And besides, I was a
professional. With training and resources.
So here’s the thing with training and resources: Depression robs
you of the clarity to use any of those skills or supports.
One note to add: I’m changing the format of the show a little: sharing people’s stories in more manageable pieces. So you’ll hear the front half of the story right now, and the back half next Friday…and with that, we’ll get to the story
P: Hi thanks so much for coming to the show. Can you introduce yourself and tell us where you’re from?
Nina: Oh, my name is Nina gaby long i Long A I am originally from Rochester New York and I now live in Central Vermont.
P: Oh wow nice. Oh is that cold for colder? Is that the trade
N: cold for we came to Vermont like got a on an adventure.
P: Nice Vermont’s Nice. So do you will you define your profession?
N: So I am a psychiatric nurse practitioner and clinical nurse specialist. And you know some of your listeners may know that that entails being an RN and then becoming an advanced practice RN with additional clinical experience and a master’s degree and many are getting doctorates now to become nurse practitioners. and it’s a state by state kind of certification. So in the state of Vermont, I have prescriptive authority. So I can prescribe medications, I diagnose people, evaluate them, give them complete workups psychiatric works up workups and then I, I prescribe medications and then I follow them. And I do psychotherapy, when time allows
P: Okay, so that’s a that’s a pretty broad specialty. And I imagine you’ve seen a lot of things in no small part because of the writing that you sent me which we will get to because I have read your piece called No stranger. I know more than I do going into Most interviews. So why don’t you tell us about the first pregnancy first just to kind of set the stage.
N: The first pregnancy was in 1974 and it was an unwanted pregnancy. And I forever will be so thankful to Roe v Wade it allowed me to go on with my life. I would not have been able to have been a good mother. At that time. I was in a relationship that it had been an International Love Affair once we were speaking the same language it it wasn’t working well at all. I had just graduated with my first degree, which was a bachelor’s in fine art. And I had already set up a studio and I already not even out of college had orders for galleries. From again, I was very fortunate from Hawaii to Cape Cod, fine, fine craft galleries. So I was just on the precipice of my life and despite significant birth control. I found myself pregnant in a relationship that I could not handle. I was drinking heavily and there was no way I could have been a mom and I
P: Yeah, was looking for. I saw you said two forms of birth control or something like that.
N: I had you remember to remember the old Dalcon shield.
P: You know that’s before my time. So I’ve heard of it but I don’t know how it works.
N: So it looks like it’s like a little bit like a scorpion with lots of legs coming off of it. It is a an evil looking thing and hurt like hell all the time. And I don’t want to get pregnant i mean I knew I thought I knew what I was doing. So we use, you know, condoms and we were so incredibly careful. And nonetheless, you know, pregnancy happens no matter how careful we are. And so yeah so that was the first pregnancy and then the second pregnancy.
P: Wait, so wait before you before you get to the second one. You say Can I quote your piece? Yeah, say I recall. Now my preoccupation with how how maybe because I’d had an abortion at 23 I would never be allowed by the powers of the universe to ever get pregnant again. This is not normally the way I think and finding it crazy. I mentioned it to no one.
I think I think a lot of people do carry that with them.
N: I also think that people don’t talk about it. Yeah, I mean, I think we would have to, so when I was thinking that way I was in you know, kind of throes of depression leading up to the pregnancy and I was I was already depressed because I was turning 40 And I wanted to have a baby and now I was I was so stable now I was sober for some I had been sober since I was 29 years old. I had a wonderful solid relationship of, a really solid marriage. I had a career a career that, being an artist was a wonderful career but, moving into healthcare was significantly more stabilizing. So I had decided I wanted to have a baby because I could be a great mom
P: yeah
N: and provide for that baby and it was a whole different thing. And then it wasn’t getting pregnant and pro and prone to depression and anxiety anyway. And so, as that was happening, I was just I was approaching 40 I was really depressed and that’s when that’s that’s kind of crazy cause and effect, thinking, you know, that magical thinking stuff starts happening where it’s like, oh, I’m being punished by the universe, which is not not what happens. that’s not why we don’t get pregnant. There’s a lot of reasons why we don’t get pregnant and that’s not one of them.
P: I 100% agree, right. that’s not scientific. I just think I’ve talked to a lot of women who get an abortion for one reason or another, and then condemn themselves and feel like, come up and say or whatever happens, right, they’re joining to things that are unrelated
N: easy to do, isn’t it? Because, I think when we first you know had access to safe and legal abortion, we were kind of on a high from that, and when we didn’t really, think that much about it. I mean, I really don’t know that many people who didn’t get abortions at some point because they were, women who were thinking through their lives, and this is what I need to do right now and I can’t do this right now and you know, just, make these decisions and then probably you remember more and more, like Saturday mornings, you’d go to the farmers market and there’d be, people protesting abortions and then people lining up in front of the abortion clinics and, screaming and shaming people and more and more it got no, it it got much more difficult to ignore the fact that there was a faction. I don’t know if you recall Dr. Bernard Slepian. from Buffalo, New York, but he was an abortion provider and in in Buffalo, and he was shot through his kitchen window and kill and I was still living in Rochester at the time. So it was,right next door of city right next door to us and route called, the lambs of God took some responsibility for that, for that murder. Although I don’t think they actually were ever charged would have nobody was from that group was ever charged with doing it.
P: According to his Wikipedia page, Dr. Slepian murder was the climax of a series of five sniper attacks in four years in Northern New York and Canada. In 1988, he was the fourth doctor in the United States to be murdered for performing abortions. He’s killer James cop went on the FBI 10 most wanted list and was ultimately found hiding in France in 2001. That cop was extradited, tried and convicted of second degree murder in Buffalo and is currently serving a 25 to life sentence. cop was also convicted of federal charges and sentenced to life in prison without parole.
N: But they came to Rochester and threatened another doctor Dr. Wartman we’re applying a whole bunch of us went to Dr. woman’s house and we circled the house to protect him you know and have the like these anti abortion people on one side of the street and then the news people were in the middle of the street and we were on the other side of the street. And I’ll never forget it was it was so interesting because the news people really wanted a story. And you know what happens? You know, I walked across the street and I started chit chatting with one of the anti abortion people and somebody else came across the street and started talking to us and before you knew it, we were all in the middle of the street talking. There was no news there was no shootout. But more and more of those things kind of started to happen. And so we really started to realize that maybe there was something to all this you know, I don’t know, I I think I changed my mind every few minutes about what all that means. But yeah,
P: that’s a lot. The politics around this is so loud, it’s hard to have a real conversation. Okay, so now flash forward, you’re 40 you do get pregnant.
N: I get pregnant. Yep. On my 40th birthday.
P: Oh, wow.
N: It was really I mean, I I bought up pregnancy tests because all of a sudden I realized, oh my god, I haven’t gotten my period. I feel like I’ve been PMS thing but I don’t have my period and so I woke up on my 40th birthday and, and the you know, the little pink lines happened and and so well that was great. Until Until a lot of the hormones started to kick in. It wasn’t it wasn’t a fabulous pregnancy.
P: So what hormones kick in pretty quickly. Does that mean the first trimester was hard or
N: the first trimester? I was working a very intense job. I was working on a crisis team. It was my job to work with people with very, very severe mental illness who were very symptomatic. And nobody wanted to use up the hospital beds for for psychiatry. So they created the crisis team and I was just immersed in it. I mean, I was working so so so hard, and so I didn’t really think that much about too much. and we were buying a house so that we would have a nice house and a tree lined street because we’ve been living in a in a strange little place. So we were like, we’re gonna get a real house and the closest picket fence, I think. Um, so the first trimester it was like really exciting because everybody you know, had a lot of colleagues and everybody was really happy for me and,then I I just really started to get more tired and I didn’t want to admit that I wasn’t going to be doing the Stairmaster on the day of my delivery date. And I think I mentioned in the, in that piece that I wrote that I did know a lot of women who we’re having these beautifully filmed births, home births, and like literally expensive mascara and French lingerie, and,it’s like, I was getting more and more ungainly. I was gaining all this weight. I was so tired and then I took on more and more I was teaching a class as well as working full time and we had just moved into a house and we hadn’t even gotten it. the inside rooms painted and, it’s really, I was going about 20 hours a day and then my my body just said no more. And I had a case manager who was my teammate, and she said, Something’s very wrong. And I said, I’m fine. I’m fine, I’m fine. And she said, No, something’s really wrong. And she said, you’re short of breath and you’re just not yourself. And so she, she came into my office, she locked the door behind her. She sat down, she shoved the phone over at me and she said, you’re going absolutely no place until you call your OBGYN and she and she was right. I called my OBGYN and he said I don’t want I don’t like the way this sounds come on over. What was holding me together was work. Like work was work with holding me together. I mean, these patients and they needed me and, I was so vital and you know how it is. And I went over and he said, you’re starting to efface. And what you experienced the other night probably was losing your mucus plug. And so I’m at seven months, right seven months, and he said, so. I’m gonna go lie down and you don’t get up again until I tell you you can put this like his little plastic basket up against my cervix to hold my cervix shut.
P:Wow.
N: And, and that was that I was on bedrest. So these are all
P: he’s putting on divers to prevent premature delivery. And what you mentioned that he said, Oh, that thing that happened before was probably the mucus plug. Did you have something that happened that alarmed you?
N: Yeah, well, I was totally in denial about it. Like oh, what’s that? Well, you know, I don’t know. And so here I was a health care professional. And I was just not, you know, ready to pay attention to my own fallibility. And, and that’s you know, that’s when the the postpartum stuff the pre postpartum stuff really started to kick in because there I was, you know, lying on the couch. Living for Geraldo Rivera Rivera. I mean, that way, he was just, you know, he was he was my guy, and I, you know, I’ve always it’s my guilty pleasure. I love soap operas.
I have since I was a child with my you know, in what would watch them with my grandmother.
N: So, you know, I would I got like, totally, there was soap operas then on all day long. And so if anybody called me while the soap operas around to see how I was, I wouldn’t answer the phone. You know, I mean, I got I was really getting crazy. And then
P: that sounds pretty difficult to go from the whirlwind of all the cases in the crisis center to bed.
N: Bed, right. That sounds pretty bad. Yeah. Yeah. So it was it was it was a very, very difficult time and of course, we don’t know how different I mean, I would hope that it would be different now. I did not feel as though though I was part I was I was in a good OBGYN practice. I mean, they’ve been around forever and, and an artist for so long and the reason I knew my OB GYN was because his wife was an artist and they used to buy my work. So I felt a connection and you know, it wasn’t like I was completely dismissed. But I think the emotional, emotional component of what someone like me a woman of you know, high powered woman, like me goes through when suddenly dreadful I don’t, I don’t I don’t think that I was not tended to. Well, I was I afterwards, but I refuse to let anybody know how bad things were afterwards because I was convinced that once I told anybody how crazy I was, that they would take my daughter away from me.
P: Well, we’ll get to that because it’s totally interesting. And it is. I mean, it highlights how difficult it is to find someone’s postpartum. You know, even even therapists and people who are trained in this field, don’t necessarily recognize it in the most in themselves. So it’s a really difficult thing, but why don’t you take us to the birth I guess it sounds like you were not imagining a home birth with French lingerie and a video camera. But But what were you hoping?
N: No, I actually kind of was initially and then my, my OB GYN said, Don’t you be thinking about none of those births or nurse midwives or anything like that because I had shared with him that when I went into when I went to nursing school, I had thought about becoming a nurse midwife. That’s a whole other story. And so he was like, that’s not happening. You are going to do exactly what I tell you to do. You’re going to have amniocentesis, you’re going to have this you’re going to have blood glucose levels. You’re going to you know, you’re going to do you know, your elderly primigravida And you’re going to do what I tell you to do. So, the birth was two weeks late, because once I settled down, nothing happened. And so they actually, they actually lied to me about my water. Having broke I asked them if they thought my water had broke, because you know, when when the baby is lying very heavy on your bladder, you can leak urine, or you wonder did my water break in? Is it slowly very slowly leaking out? So he told me yes, that’s what he thought. He thought my water had broke. So then I knew enough that you know, baby had to be born with in a certain amount of time. And when I didn’t progress, labor wise, told me I had to have a C section. I didn’t want a C section. More than anything I didn’t want to see section.
Episode 61: Managing Abortion and Postpartum Depression as a Psychiatric Nurse: Nina’s Story, Part II
Episode 60: Managing Abortion and Postpartum Depression as a Psychiatric Nurse: Nina’s story, Part I
Episode 59SN: Experiencing a Late Term Abortion: Kate’s story
Today’s episode features the story of an extremely challenging pregnancy that ended in a late term abortion, which was difficult for many reasons, and made more so by the politics and legal apparatus around abortion. My guest was well into a pregnancy that felt off to her in ways she could describe, but which didn’t trigger any particular medical action, because first, the diagnosis when it came was for a very rare condition, and secondly, she made it past the 20 week screen with no visible issues on ultrasound. That my guests first pregnancy was visited by a significant hemorrhage and was By comparison, the easier pregnancy gives you some sense. One thing she says that I think bears repeating upfront is that extreme circumstances sometimes lead to extreme actions.
To connect with Kate:
TFMR group support at Ending a Wanted Pregnancy
Coaching and blog at Nightbloom Coaching
Esquire Magazine article about Dr. Hern
https://classic.esquire.com/article/2009/9/1/the-last-abortion-doctor
Statistics on Dandy Walker Malformation
https://medlineplus.gov/genetics/condition/dandy-walker-malformation/
https://www.ninds.nih.gov/health-information/disorders/dandy-walker-syndrome
https://my.clevelandclinic.org/health/diseases/6002-dandy-walker-syndrome
CDC numbers on abortion
https://www.cdc.gov/reproductivehealth/data_stats/abortion.htm
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 episode features the story of an extremely challenging pregnancy that ended in a late term abortion, which was difficult for many reasons, and made more so by the politics and legal apparatus around abortion. My guest was well into a pregnancy that felt off to her in ways she could describe, but which didn’t trigger any particular medical action, because first, the diagnosis when it came was for a very rare condition, and secondly, she made it past the 20 week screen with no visible issues on ultrasound. That my guests first pregnancy was visited by a significant hemorrhage and was By comparison, the easier pregnancy gives you some sense. One thing she says that I think bears repeating upfront is that extreme circumstances sometimes lead to extreme actions.
I’ll let her tell her story.
Hi, thanks so much for coming on the show. Can you introduce yourself and tell us where you’re from?
Kate: Yes, my name is Kate Carson, and I’m from Massachusetts.
P: Okay, wow, fun. We’re going to talk about families and so maybe we should start this conversation talking about the family you came from and how that may or may not have influenced your ideas about the family wanted?
K: Absolutely.
P: Do you have siblings?
K: Yes, I have a younger brother. He’s like two years younger than me. I grew up in a family with both my mom and my dad and my brother. And I have a pretty great family of origin. You know, we would eat dinner together every night at six and we did family vacations together and it was a really solid place to get a start.
P: And did you think growing up I want to be a mom.
K: Absolutely. Yep. Being a mom is the only thing I ever knew for sure. I wanted to be
P: oh well, that’s awesome. So let’s fast forward to the being the mom part. Was it easy to get pregnant?
K: You know, the first child didn’t feel easy to me at the time. But if I known then what I know now I would say yes, that was super easy. It took us five months and then we got pregnant. And it was a beautiful pregnancy. When I was pregnant with my daughter Elsie. I was sick for for the beginning. But then the fog lifted and I was just glowing and I felt incredible. And I loved being pregnant with my first pregnancy.
P: That’s awesome. And how was that birth?
K: the birth itself was good. I had planned a hospital birth and again, if I had known then what I know now I might have made some different decisions and different plans but I labored for like 19 hours and then I was tired and I said now I’m gonna get the epidural. So I got the epidural. What’s difficult is I’m a puker, not in life, but in pregnancy and birth, so I was vomiting a lot and that was really exhausting and distracting from the process, because it was also sort of one of those people’s a little afraid of vomit. So they gave me some antiemetics and that helped. And when I did have my baby, I was you know, on my back and they brought a mirror and I really liked that they brought a mirror I just remember her head and merging and there were these decreases in her skull and my husband and I just looked at each other for a second like is this okay? And then we looked at the nurses, and they seemed totally chill and we were like oh it was be normal to come out like a raisin.
And she was born and they had to suck out her lungs because of the meconium. So it wasn’t perfect you know, like she was separated from me for a few minutes at the beginning. If I had been better supported to move around. I might not have needed the epidural that kind of thing. But it was the hospital it was the is the hospital I chosen. It was the birthday of planned for. I had her vaginally. There was a little bit of tearing that much it after a few hours after I had a bleeding emergency and that was not great. That was quite traumatic.
P: Let me slow you down a little bit here. So first question is you didn’t get the epidural till 19 hours in because you were imagining you weren’t going to get one at all.
K: Yeah, that was that was the plan. Okay,
P: you can see the birth is something that’s very hard to plan for because there’s no experience, no experience like it and you have no idea how exhausted you’ll be right until you get there. And then you had a hemorrhage or what happened after
K: I did…I had a hemorrhage and it must have been happening in my womb but it was blocked because it was several hours after the birth. I’d eaten I finally stood up to brush my teeth. And it was in the bathroom. I was standing there. It was just like I looked down. It was a small bathroom but I had totally covered the floor was what like the entire entire bathroom was a pool of my blood
P: goosebumps. Yikes.
K: Yeah. And I looked at my husband and he looked at me and said call the nurse and he went out in the hall. That was his first impulse was to go out in the hallway and he caught the nurse coming in the hall and he said my wife needs you. she’s bleeding. She needs you. The nurse. Not come. She gave him the Oh, like she didn’t say this out loud. But I know how nurses feel about husbands and blood. You know, she assumed he was being a worse and she went on with her with her.
P: Wow.
K: So I was still standing there looking up at my reflection in this pool of my own blood. And seconds were ticking by and the minutes were and I just looked it up and I was like pull the string. So my husband pulled the string and when they pull the string they have to come so the nurse came back in and she she looked annoyed she was visibly annoyed when she came back in and she took one look at me. And then I could see she was afraid. She was afraid. And I think it was the kind of fear where it was like, um, like she dies on my watch. And I didn’t come you know like it was it was very bad.
P: But also scary for you to see her scared.
K: Like totally, absolutely.
P: So how are you feeling physically like are you feeling faint? Are you feel totally fine.
K: That moment?
P: Yeah.
K: I was feeling I call it crisis consciousness. So they pushed me down on the bed and they were trying to save my life but to my body to me it felt like quite a violent, extreme thing to have happen where they push you down on the bed. They’re really pumping my body on the womb to try to get it to contract against smaller things are going in every orifice. They’re suppositories going in my anus. They’re like things are putting in my mouth. They’re putting stuff in my veins just to try to get the uterus to contract and stop bleeding. And then the doctor comes in and with love goes on up to the elbow in her hand into my poor body. They just had a baby all the way up to the elbow, and basically wiping out like grabbing for any placenta or anything that was left in the womb.
There was no time so the pain medication was not Kicking in yet. So that was way worse than the birth. When people say birth is the worst kind of pain to me birth has a certain kind of intensity in the body like a really extreme physical power and intensity that sometimes includes pain, but it’s not a pure pain experience. This was a pure pain experience, and so it was scary and it was painful and when I was recovering from my birth, I was also recovering from that. I did not need a blood transfusion fortunately, but it was borderline and they kept waking up the thing about hospitals they wake you up all night long when you’re there. Pretty strange because I really feel that sleep is like the most important thing to healing both physically and emotionally.
So they would take my– they must have been testing my hematocrit or something, testing to see what my iron was to decide whether or not it would get a blood transfusion. My baby, of course had been taken to the nursery during this and my husband had been sent out of the room. When I was discharged from the hospital. We all were invited to go talk to a lactation consultant. So I went down the harmful times that lactuation consulting there were a bunch of all the mothers on the ward were there and the fathers to the lactation consultant asked any of you send your child to the nursery? I raised my hand and she said Did she get any formula? I said yes. They said that they fed her from a syringe a couple of cc of formula. And she pressed me down. She made an example of me in front of all the others. She told me that I would not be successful breastfeeding as I had let them take my daughter to the nursery told her she told me that it was like he would never latch because of that. That that I basically like screwed my entire bonding opportunity.
P: That’s crazy. That’s crazy. What while you’re down I’ll kick you if that’s fine.
K; like he’s like this is supposed to be support for new mothers Right? Like, even have a lactation consultant now to support new mothers. My breastfeeding journey was difficult, but not for latching reasons. And I successfully breastfeed my daughter but even if I hadn’t, you know, yeah, that wouldn’t have been my that wouldn’t have been why all those
P: all those things you’re describing suggest weird dissonance between like the medical care that you’re giving the emotion of this whole process, right? They’re like divorced completely and I totally get that they have to save your life in the moment and they need to do the things they need to do but to not have someone there to also be comforting and I understand that kicking your husband out because he’s gonna freak out and it’s terrifying to watch your loved one in this. But then to leave you there as if you’re like, getting a two pulled or something.
K: Yes,
P: on your own. seems weird to me.
K: It seems weird to me too. And it’s just even if it was the thing I needed for my physical safety in the moment. feels extremely unsafe in every way like it feels to my body and to my mind, like it is the most violent thing that’s ever happened to me. You know, so it’s so confusing. To have it be like I know my doctor is trying to do the right thing and help me but that’s not my experience of it at all.
P: Good Lord. Well, I’m glad you weather that and so sorry that that happened. That sounds like I mean it’s it’s like shocking to hear so I can’t even imagine experiencing it because it’s totally scary.
K: I used to be a teacher and now I’m a somatic coach. And so to be a somatic coach had to go through all of these cell processes on myself that I then work with other people, and one of them is a vaginal De armoring process where we do pressure point like trigger point in the vagina and on the cervix. And when I got to the cervix and I applied pressure to the cervix. I got I flashback to this. This is what was in my cervix and I would know enough about my trauma to like usually when I’m dealing with trauma, I’m not dealing with my first birth I’m doing with my second birth but when I went to my cervix versus what was their bleeding event.
P: I mean that’s amazing. I’m telling that like this, this is not the traumatic one. This was not the harder one right?
K: This was not the harder one
P: so you leave the hospital your baby’s fine. So all that is good.
K: My baby grew so fast. She was so chubby. My difficulties with breastfeeding were in getting comfortable breastfeeding, but I have made way too much milk. It was super fatty she was thriving. So even the problems they had were not the scary problems. They were uncomfortable problems. I found a really good lactation consultant, really supportive who undid some of the challenge before and the support group and so it was among other moms who are also going through the same things. breastfeeding support. And you know, that part was fine. I didn’t I didn’t have hormonal mood disorders or any I mean, I had some baby blues, but I didn’t have like the postpartum depression. I didn’t have any trouble bonding. I just had trouble figuring out how to breastfeed without pain and eventually with the help of doctors and lactation consultants that settled out
P: okay good
K: yeah, so I would say that it was really good she’s she’s still very strong and bright and calm. And she’s she was an easy baby and she’s very much the same person. Now she was then
P: that’s awesome. So how long between the birth of the first child and the pregnancy for the second one?
K: Well, there were three miscarriages in there. But I would have been on track to be having a baby like three years later, so two and a half years ish until I was pregnant with the next one that I consider a baby No. First miscarriage was a blighted ovum. And the next one was fairly early, and then the next one was even earlier. So it was hard to go through that and that’s when I sort of learned like, oh, five months of trying and then having a healthy baby is actually not a hard journey to get pregnant. Like now I’m having these losses and I’m afraid what does this mean? What does this mean about my body? What does this mean about my fertility? Right?
P: Yeah, that sounds much more complicated and so interesting, because I think all of us for the first one imagine the minute you start trying to be pregnant because you’ve spent your life until then, like worried that you get pregnant right when you weren’t ready or
K: Absolutely my whole life until then. I mean, I can’t tell you how many years I was on the pill. I was on the pill before I was sexually active because of really bad cramps. And then I continued on the pill when I was sexually active. I would sometimes use condoms as well. I had been so careful because it just felt it’s interesting to grow up feeling like my womb is like a ticking time bomb of catastrophe, right? Yeah. Not the relationship I want my daughters to have to.
P: That is a really good way to describe it. It is like a tricky, tricky relationship there. So now you’re pregnant and this one sticks.
K: This one sticks, and I’m glad that it’s sticking but I’m also very anxious because of all the miscarriages I’ve had before so it doesn’t it doesn’t feel real for a while I’m very sick for this pregnancy. Second, on second sticky pregnancy. And I’m just like, sick all the time having a really hard time making it through the week. I remember I would take my daughter Elsie was two at the time, take her to the grocery store because she could just like grab up to go meal and I would sit there and eat and I remember there was a week. I could not eat and I know how bad that is. I remember my midwife being like you have to eat but like, easy to say you have to eat. It’s really hard to put food into your body when you’re as nauseous as I was.
P: Yeah. And not excited to throw up.
K: Yes, I’m fearful of vomiting. But there was this one day at the end of that week where I had asked him not wanting to fast where I just saw the pepperoni pizza and I was like, yes. Nobody asked him a few pepperoni pizza. So I bought one and I ate it and then it got back up and went through bought another one and I ate it and it was like, okay, okay, now I can eat. The pregnancy was a little bit difficult in other ways too. I developed sleep apnea during this pregnancy and that like I was falling asleep on the park bench not just in the first trimester when your hormonal exhausted but like into the second trimester.
You know, I was like 25 weeks and falling asleep at the park because I wasn’t sleeping at night. And I called my family physician. And he immediately referred me to a specialist. The specialist was a neurologist and I went in, he looked at me and he goes you’re pregnant. And he said you don’t have sleep apnea. You have restless leg syndrome because you’re pregnant. I said, I’m quite sure I don’t have restless leg and my husband says I stopped breathing at night. Here hears it. He witnesses it. Can I please have a sleep study and he turned me around and I stood up for myself to a point but not far enough. I did not make enough of a nuisance of myself to get that sleep study and I went home defeated and continued having sleep apnea.
So years later, I did get the diagnosis and I got the CPAP it feels terrible to be discounted that way in your pregnancy
P: yes, yes.
K: Meanwhile, with my obstetric team, I would tell them that I was very anxious about this pregnancy. And maybe because I was using the word anxious. They will be like okay, it’s a problem as anxiety, right? They would take the heart rate they would like measure me they’d be like, everything’s great. And I’d say, you don’t understand like something feels really wrong with this baby.
P: No one has explained or understands what led to the repeated miscarriages at this point.
K: correct. My first miscarriage I got a DNC so you go on the internet. And the internet is convinced that everyone has Asherman’s syndrome, which is scarring and adhesions of the womb and there are some women who do so I’m really glad these groups exist, but it there’s a real bias pushing people towards that assumption online. And so I thought I had Ashmans so I got seen by someone who put a scope in my uterus and took a look around in the walls of my womb were very smooth and very pink just the way they should have been. So that was not my situation. I still don’t know why I had those miscarriages. I have no reason why anything that happened to me happened.
P: I was kind of imagining that your anxiety is to some degree related to this uncertainty about what was going wrong before but it also sounds like your body has some intuition that like something’s not quite right.
K: Both of those things are true. At the beginning. It was just based on the path of miscarriages I’ve been on and not having any reasons and just like wanting this so badly and feeling so out of control of it. Right. Is very normal. A lot of people Yeah, in pregnancy. The pregnancy progressed, different things felt wrong, like things I could actually point to felt wrong. And I got my scan at like, what like 19 weeks 20 weeks when I got my anatomy scan. They left the room and didn’t come back for like a half an hour. And my husband and I were looking at each other and being like, are we done? They didn’t say goodbye but they also didn’t say to wait. We left and my midwife called and was like, Why did you leave? And they said because I thought it was over. They ended up escalating us for a closer look. I thought they saw something on that ultrasound and they escalated us for a closer look like teaching hospital the level two with the maternal fetal medicine specialist. He took a look and he was like a long look like an hour long like and he said everything looks perfect. I’m so glad to give you this news that everything looks perfect. The genetic counselor was ready to like break out the champagne. And I remember looking at her and saying how short is he? Should we come back for another look like how short is he that everything’s okay? And she said like by overturning that concern. He basically is staking his job on it. That everything’s okay. She’s so sure we said okay, and we went on our way
P: and they didn’t tell you what what they saw that caused them to ask for the higher level.
K: Eventually they did but no not not when they sent me for the high level they were like just don’t just don’t google it. Just don’t google it. You know, when it was dandy Walker malformation was the thing they thought they saw and they sent me that’s a brain malformation, a set of brain malformations and they sent me to him and he was like No, this baby’s fine.
P: Dandy Walker malformation is a brain malformation that occurs during embryonic development and affects the cerebellum area of the brain that helps coordinate movement and is involved in cognition vision and behavior. With this condition, the cerebellum is absent or very small. In some cases, like Kate’s it can also affect other parts of the brain.
K: Well, that hung over me too.
P: Yeah,
K: right. So that was one of the other things that was hanging over me and then this thing I could really point to was the way my baby move was so weird way my baby moved in my womb was so different than her sister. So and Elsie healthy baby was moving around in the womb, sometimes she would be very active and sometimes she would rest. Sometimes she would flutter and sometimes she would like kick her elbow or roll right like there were multiple sensations made sometimes were very active and sometimes there were long periods, hours long periods of rest, while she probably slept. This baby moved all the time.
P: oh, That is weird.
K: No rest. And this baby moved the same way all of the time, and it was spastic tremors and spasms all of the time. So when I would try to say this my medical team I would say something is really bothering me. She moves all the time, and they’d say, that’s great. I will tell you I don’t think there’s any literature on this. It’s been several years since I last looked. I don’t think there’s any literature so they would have no way of knowing what I was talking about. But I knew experientially in my body that it was very, very different.
P: So I’m guessing this as a rare condition is a rare condition. It’s really hard to be at the edge of medical understanding where you have a sense that something’s wrong but no one is echoing that back to you because they don’t know what they’re looking for.
K: Exactly. They believe it’s one in 10,000.
P: Okay, that one in 10,000 statistic may have been what was available and she was going through her pregnancy in 2012. But now doctors estimate that it’s roughly 1 in 30 1000 But Kate’s case is even more rare, given the specific complications that her pregnancy involved. To put them in perspective. According to the National Weather Service, your lifetime risk of getting struck by lightning is roughly one in 15,000.
K: But most people end their pregnancies rather than carry when they get this diagnosis. So even though 1 in 1o000 pregnancies may have this not one in 10,000 births.
P: Right. Okay. And what is the diagnosis and when did you get it?
K: Well, wasn’t until later when I was trying to prepare for my birth at a birth center. And my midwife was asking me how I was feeling and I expressed continued anxiety she said, You know what, we need to get a look at you because I don’t want you heading into your birth feeling this way. So she leveled me up and sent me in for an ultrasound. I was 35 weeks pregnant when I went in for that ultrasound, date of last menstrual period and they did the ultrasound and I was being very chatty. And the technician was being very quiet. I thought she was just having a bad day. She was I didn’t know why. At the very end, I was talking about how having another baby like, I know she’s going to be different but like part of me just imagines that all babies are the same. It’s gonna be just the same as when I had my first baby. And she looked me right in the eye and she said, this one’s different and sort of like froze
P: that’s chilling.
K: And then she sort of shook it off and she said they’re all different. All babies are different. And she left the room and she got the doctors and the doctors came in. Remember two women clipboards glasses, white coats. I’ve never met them before and they said, you know those problems we weren’t seeing last time you were here. We’re seeing them today. Your baby has dandy Walker malformation, and she may be missing her corpus callosum which connects the two hemispheres of the brain.
P: As you can imagine, the cerebellum is already compromised, and now the fetus is missing another part of its brain. As Kate mentioned, the corpus callosum is a C shaped nerve bundle that connects the two hemispheres of the brain allowing them to communicate to be born without this nerve bundle. can lead to a whole host of issues, including seizures, feeding problems, delays and holding the head have racked impairment of mental and physical development and or accumulation of fluid in the skull called hydrocephalus.
K: So she has several brain anomalies and they pointed it out to me on the screen. Her brain should have looked all gray all light gray on the screen, but there were big patches of black and that’s where her ventricles had swelled with fluid where you know where there should have been gray matter, but instead there was just fluid. She would eventually probably develop hydrocephalus, but no one could tell when that would happen. If it happened before she was born, it could swell her head to undeliverable proportions. They were telling me all about like, I would need a C section. And I remember I was like, but I want to breastfeed and they were like, Oh, honey, like, I don’t think you understand. You know, I was in such deep denial that I was clinging to things like but I want to breastfeed but I wanted to give birth at the birth center. But if they were like, you’re so far out of that plan right now, but I just couldn’t hear it. And the only thing I heard when they said after telling me all about the plan to stay in the hospital and resuscitate the baby basically told me, We can offer you adoption. We might be able to offer you abortion, but we just don’t know.
P: So what’s the prognosis for these kids?
K: It’s a really good question. They wouldn’t give it to me that day. But two days later, I had an MRI and I met with a neonatal neurologist. And he said that my baby given the extent of the missing pieces in her brain was not likely to ever walk, talk, support the weight of her head or coordinate swallowing she wouldn’t be able to swallow. I remember hearing the swallowing and saying this is very, very sad, but I know we don’t want a feeding tube. If this baby cannot thrive, we do not want a feeding tube we want her to pass naturally. And someone on my team said you can’t refuse an infant feeding tube. That’s not within what’s legally available to you know, that was when I sort of was like, oh my god, like what? Like, and they kept saying I couldn’t read to hospice because this was non fatal, but they also kept telling me it was going to kill her probably very quickly. So,
P: when they say non fatal, though, they may not immediately
K: that means I don’t honestly know what they mean. I didn’t know what they mean. From what I can tell. It means 0% of these babies survive more than x number of hours. So not just immediate but complete. And there are so few conditions for which there’s like no question of when a baby dies. You know what I mean?
P: Yeah,
K: but I will tell you that I talked to my friend after later who’s an NICU nurse. She has had a few babies like my baby and she has never seen one leave the hospital.
P: Wow….I assume it’s completely overwhelming,
K: it was completely overwhelming. And when he just kept saying like all these things, she won’t do this. She won’t do that. She won’t. He didn’t say well, he was very he was very careful with his language. I’m a scientist too, so I recognize what he was telling me. She won’t likely it most likely she will. If she walks it will be after many years of training with braces and therapy. If she talks it will be a few words after intensive verbal therapy for many years. He wasn’t making any promises but he was showing me the spectrum. The outcome was really like this person will have a very limited life if she lives at all.
P: And the reason that there’s uncertainty in part is because they’re looking at a scan of her brain in utero, so they can’t quite make out exactly what’s missing.
K: and Even if they could the brain is so plastic the brain is amazing. It is totally vital and important to life. So that if there’s a problem that can be a huge problem, but it is also very plastic and that neural networks can form. You know if there’s a normally a message that would go through the corpus callosum across the brain, sometimes the brain can figure out how to make a different network that we were using. Right? So that is how you get your people who really thrive more than expected is that their brains are plastic. Also the brain development is not complete until you’re 25 years old. So if you’re lucky and your brain is able to grow in line with your needs. Best case scenario for my child is that she would have lived, I don’t know maybe to the age of 10 Maybe that she would have been able to do a little bit of mobility for a little bit of time every day after much physical therapy. It’s you would have been able to communicate mostly non verbally. That’s still a very limited life. Right? And when I saw
P: it sounds like there’s so many motor functions that don’t work like swallowing and walking was confusing to me is that there are things there that are so limiting. It seems like wild to say in a couple of years. You’re gonna live with a feeding tube for a couple of years with no
K: children like my baby would, as long as they live with me either feeding tube or a port right like a child like that would definitely get a port they were also telling me that you know this is a seizure disorder. It will eventually result in hydrocephalus, which will cause further brain damage both the seizures and the hydrocephalus. So if you want her not to get worse as best, she would require brain surgeries. So there was this like really invasive surgery that she would need maybe multiple times over her life. Yeah. would never make her better. It would just slow down the rate of getting worse that would protect against against getting worse. But It’s painful. To all of this and being like all of these things she can’t do. I can put it in my head now because I have a friend who has a child who has survived to to into childhood with this disease or something similar to it. And so I can imagine now because I’ve done my research, but this was really acute early days. And I just couldn’t picture my child and I just wanted a picture in my head of how my child would be not just how she wouldn’t be. I asked him, she won’t do all of these things. What do children like mine do? Do they just sleep all the time? He winced and he said, children like your child are not often comfortable enough to sleep
P: God, taking away everything. Good lord. Yeah. So will they will they counsel you about like what to do or
K: sort of? It’s tricky. It’s very, very tricky. Now I do this kind of polling. So I understand how it’s tricky. It’s very tricky to hold someone in a values based life and death decision making out, pushing them or shaming them. Right so I did receive counseling from a genetic counselor. And it’s really like just this open space where you’re like, what do you need? And I was like, Well, I need to know how much this is going to cost. And she’s like, Okay, I’ll get you a social worker, who’s going to tell you how much money you need to raise a child like this in the world. I never got that far. That night when we were going home. I call my doctor said I want all my options like I want. I want them all. Please call me back with everything that you have.
And so she called me back I already knew I talked all day with the intervention. Team. So I already knew that like we push for life option, but she called me back and she said, here’s the adoption number. They specialize in medically complex children here and she said, I’m so sorry, but if you want an abortion, we have to hang up right now because you have to call we had a half an hour I had to call in the next half an hour or the week would have been over in the timezone I was calling she said if to call before the end of the workweek mountain time. I remember thinking, mountain time. Right. Now, what is she talking about? But I didn’t want to provide any friction. So I just took the phone number. I said thank you. I called it and the woman picked up in Boulder, Colorado. And she explained to me she’s she again she said I’m so sorry. But if you want this abortion, this was a Friday night she said you have to be on a plane on Monday. You have to show up in Boulder with $25,000 on Tuesday.
P: Oh my god. Just being pushed to make a decision that fast already seems like whoa, whoa, whoa,
K: I know, I know. But I was 35 weeks pregnant. I did not have time. I did not have time I was 35 weeks zero days pregnant the day that I called the clinic. And she said this is the thing like we don’t have time. It’s a four day procedure. So putting it off till Tuesday is like the latest. We can put it off right this was until 2012 to so Roe v Wade was in place. But the reason I could not be seen at home is because Roe v Wade did not protect my case because it was after these opposing point of viability, which had always legally been measured dates wise and 25 Weeks was about where it was at I was going through this hellscape
P: will you just remind us viability just means you can live outside the womb. That obviously doesn’t mean unassisted.
K: It’s another one. Fatal where it means nothing to me. Now that I have been down this rabbit hole. What does viability mean? Supposedly it should mean that if you give birth to that baby, you can live without the life support of your body. But my baby clearly couldn’t, right? Because even the feeding tube even though it’s a small intervention, it is still an intervention. So
P: well feeding tube forever, right? I mean, it’s one thing to say they’ll need a feeding team for you know, two months until something develops, this is not getting better. So that’s a different thing entirely.
K: There’s no getting better from this particular constellation of brain anomalies. There’s only like, you mitigate it, and maybe the brain is plastic enough. To have a good life or like you die real fast. That’s it.
P: Well, it sounds like maybe you live for a little while with pain and no way to communicate that well or feel better. And then you die slowly or you die quickly.
K: Yeah, I mean, it when it comes down to this, it gets so hard because it’s like, life is beautiful. And even when it’s brutal. It can be really precious and important. And so sometimes people choose to go forward even though they know what the pain is going to be. You know, and I really respect that and I want to hold so much respect for that choice because it is beautiful. Life is a beautiful gift. Sometimes it is brutally hard. And the gift I chose for my baby was peace because in my values for my family. That was the gift I wanted to give my daughter was the certainty of peace. So I always think of it as life and peace and like most pregnancies, most babies, they get to happen both and of course we want to give them both. We all want to give them both. But sometimes like in my situation, I could really only guarantee one of them.
P: Yeah I mean for me the hard thing is making that choice for someone else. Right.
K: totally, totally
P: So so it’s not I mean, you might choose that for yourself but to choose for someone else to live in out of discomfort is so I mean and I agree with you like it is amazing that other people make a different choice, and I applaud them for that. But I think I would live with guilt of inflicting this on someone else, right knowingly. It’s different when you know, right?
K: Totally. And for me I feel so strongly about it for my baby and for my body. You know, there were 48 hours there between my ultrasound and my MRI. I did not know that abortion was available. I did not know that it was an option they had told me maybe and I had talked to them about it and they had said, No. Where did you use to send women and they say they said oh we used to send women to Kansas but we can’t anymore. And the reason they couldn’t anymore is because Dr. Tiller the abortion provider in Kansas was shot in the face at church because of assassination. Because of domestic terrorism against abortion providers.
P: Oh my God
K: Yeah, so and I knew that when she said that, somewhere in my memory, that new story popped up and I was like, oh my god, what am I getting into? So there was this time where I didn’t know there was anyone who would take me I was so pregnant, like I was so pregnant. And yet I knew for sure that I couldn’t do the only path that was legally available to me at home. So I was making all these contingency plans because this is desperation right
P: wait, why is it not available in Massachusetts.
K: So it used to be you see if I can get this right and please let anyone who knows more about the lock correctly if it’s not believe it used to be that Massachusetts it was legal to provide a termination of pregnancy up to 25 weeks from conception. However, instead of measuring from conception, they would measure from date of last menstrual period. I don’t know why did that bullshit, but it shaved two weeks off. Either way. I was 35 weeks and I was well beyond. Now Massachusetts didn’t have to provide until 35 weeks because Roe v Wade only provided to 25 weeks from date of conception. So they were in line with Roe v Wade. Now I have fought tooth and nail along with several other really prominent activist mothers like myself. We have expanded the laws in Massachusetts called the Roe Act that allows for quote unquote, fatal or lethal anomalies first of all to be determined by the doctor so that we do not actually say what’s legal we let the doctor decide what’s legal, and second of all, to be terminated at any stage of pregnancy, in the case of these legal anomalies. Now, as you and I have discussed, I don’t think my baby would qualify, we thought based on the way they talk about legal anomalies. It was based on the way they talked about them. So I think it still wouldn’t help me but it still would help someone who had say a diagnosis of Trisomy 13. But that’s usually picked up much earlier. Much much earlier. It would help someone who had Oh with something that can happen later in pregnancy like I know someone whose baby had a horrible brain bleed later in pregnancy and she might have been able to access his care. I will fight tooth and nail even if it helps one woman, you know, because I know what it’s like to be cast out of care and right now in this environment in 2012 when this happened to me, to have to go to Colorado was a very rare thing. Right now it’s common in the waitlist to Colorado. I don’t know I haven’t talked to the physician lately, but I would imagine it’s at least six weeks long. And if you’re 35 weeks pregnant, six weeks is too long.
P: Good Lord. Oh my god. Yeah. So
K: I know if you believe that it is morally superior to get an abortion earlier in pregnancy than later then you have to make abortion early as accessible as possible. Because what happens when men’s produce is that everyone ends up waiting and all the abortions happen later. Even for those of us who don’t think it’s morally reprehensible based on dates, it is unambiguously safer for a woman in her body and your fertility to get the procedure she needs promptly than it is for her to wait. So that’s just my plea for everyone to bring some sanity back to this. But in 2012 I went to Colorado because I was denied care.
P: I thought you can’t fly after 28 weeks.
K: Oh my god, that was a huge source of stress. For me. That was a huge source of stress for me. So it was in crisis mode. And in crisis. You don’t ask any questions you don’t absolutely have to ask.
P: yeah
K: So even though this was in my awareness, I did not ask my doctor. Even though my contingency plans were extremely unsafe and illegal. I do not tell my doctor because if I had told my doctor I was going to do something that might kill me, like go off in the woods and have a medically complex child in the middle of nowhere as far away from the hospital as I can get. She either could have hadn’t. You know like, Okay, now you’re putting your life at risk. And I think you’re sort of suicidal and I’m gonna get you this abortion, or I’m gonna get you put in a mental hospital and then you won’t be able to get an abortion at all right? So like, I knew those two sides of the coin, or this sounds dangerous. We’re going to bring a child protective services and take away the child you have because we don’t think you’re a mother. Right? Like, this is what desperation does, is it gets us against a wall like that. So when I went to Colorado, it was like this door opened. This door opened and I am stepping through it because I can live with myself if I terminate this pregnancy and I might die with my other options that I can ethically live with within myself that are in line with my own values,
P: And I’m assuming that your partner is on the same track.
K: My partner was so supportive, my husband was incredibly supportive. And you know what? I did not tell him either about dangerous plans. I kept them all the way inside. But he was absolutely like, Yes, I will get the tickets. I will book the hotels. This is a week long procedure. This is not a day. This is like a week of my life. And so he actually was so generous as to say at first when we were driving home from the neonatal neurologist and we were in the car. I knew what I wanted. To do, but I couldn’t say it. It hurts so much to say abortion. And so I looked at my husband, he always wants to please me. And he always likes to say what he knows I want to hear. And so when he looked at me and he said What do you want to do? I said, I need to know what you want to do first and I need you not to try to sugarcoat it.
And he said I think we should ask about the abortion. And it was like I had been in his dungeon and it was like the light just flowed in and like I just felt like fresh air and sunshine when he said that because knowing that he was on my team, and then I didn’t have to do it alone. Something that’s so stigmatized and taboo to at least know that I wasn’t completely alone was incredible. And to know that our values were in line around this. It’s a tricky value situation.
So we went to Colorado and we did not have $25,000 But again, I didn’t ask because I didn’t there are abortion funds and everyone listening should know there are abortion funds and you should ask for money if you need it. However, we do not ask but we did ask my parents so I did tell my mom and I said mom, I think I’m gonna get an abortion and she cried with me and she said I would do the exact same thing.
P: Oh, that’s so nice.
K: Yeah. And she asked my dad because my mom has been you know, she she has run our household and been an incredible volunteer in our town my whole life, but she has not earned money for a long time. So my dad’s the one with all the finances in the family. She asked him and he said this is exactly why these procedures exist. Because when you’re talking about abortion of 36 weeks even there is no safe audience like there’s no one who I can say like would absolutely support that. Right. So I didn’t know what he was gonna say but he said this is exactly why these procedures exist. They pulled money out of the retirement early, because you can do that for medical emergencies. And they able to arrange the finances while we live.
Now Oh, I remember you had said you’re not allowed to get on a plane. So this was a huge source of stress for me. I dressed in my husband’s clothes. He’s much taller than I am. He’s just like a much bigger guy than I am and I dressed in his clothes, so they were like droopy. It’s like when you hear about teenagers who are trying to hide a pregnancy. That’s what I was doing. We were in the airport and just thank God that those counters are so high, you know and that I carry small because right and petite woman and I carry small and we couldn’t sit next to each other because we had booked them just just like the day before, you know so we were opposite ends of the airplane and I just was so afraid someone would stop me because if someone stopped me I didn’t know what I would do.
P: Yeah,
K: I actually told my husband before we did this before we went up to the to the site. I said we need a new story. I’m pregnant with twins. That’s why I’m big. Like I really that was the story I gave him. I Now know women who have asked their doctors for a note of travel that is also an option. So unfortunately you can’t do that if you’re in a hostile state. So if you’re in Texas please don’t ask your doctor for a note of travel because it could get you or your doctor in a lot of legal trouble but I went with the big of made up story.
P: Good, that’s smart
K: Yeah. No one challenged me good when stopped me. So we ended up in Colorado. The clinic is quite protected. So I remember we went to look at or it just so we know where we would go in the next morning. And we were like Oh, do you think it’s like the bunker with the razor wire? For us? Yes, it is. We see it in just a nondescript hotel. And again, we don’t want to be seen. So I never came in that hotel, the front door not once I waited out by the emergency exit and my husband would go in and you come up in the door. And then go on stairwell. So every time we came in and out of our hotel I would come in and out the side door. It was a lot of shame. And that particular piece was shame I put on myself like no one made me do that. But I was so afraid. That if I came in this big pregnant lady all week and then one day I came in not pregnant anymore. I was just so afraid. What that would be like to be seen that way.
P: It’s so sad and crazy to me that at this time when you need the most support ever and you’re going through so much that you also have to reread this totally that this clinic is fucking surrounded by razor wire, what?
K: my physician, Dr. Warren is clinics been shut off before you know and he’s an inspiration. He’s incredible. He used to give obstetric care overseas in a country where abortion was illegal. And he will tell you, you can read it. I think there are articles in Esquire. It’s called the last abortion doctors somebody who’s from a long time ago, but he will he will say like one side of the ward for all these happy women with their babies who wanted to have babies and were ready to have babies on the other side of the board. Were all these women like in dying because they were not ready to have babies and had botched abortions and got really badly. So he gives abortion care at all stages of pregnancy is one of the very few doctors in the country who does and he will say why do I do this? Because it’s the most important thing I could be doing in medicine. And he was there for me in 2012 There were two clinics in the country that would take one of them was closed for the week. So Leroy carhart’s clinic in Bethesda Maryland would have taken me but they were closed. And Dr. Horne Hearns clinic in Boulder would take me there’s also southwest women’s in Albuquerque, but they don’t take women as far along as I was it’s only to 32 weeks or 30 It’s not as far maybe 34 It’s not 36 at that much and then since then one new clinic has opened in Washington DC. So that’s another one to know about.
P: I can imagine that you’re in a particularly rarefied group because your problem is rare. Yes. Right. So they just that’s why they didn’t find it until so late
K: and often when people end pregnancies for medical reasons. The problem presents itself early in pregnancy. That’s why we do prenatal testing. So in my next pregnancy, I got a blood test with free cell DNA. So I knew that the most common chromosomal problems I knew my baby was chromosomally normal, right with x and y and 1318 21. Right. So some of these things can be picked up very, very early. And some of these things can be picked up later. Like when people might have a heart defect that tends to be picked up around 20 weeks, but the brain keeps developing. So what I find is that brain anomalies are the most often late detected,
P: under diagnosed, right? Yeah,
K: exactly late diagnosed or under diagnosed category of malformations. And of course, problems can come up in a woman’s health as well during a pregnancy. But if I had had a problem with my health, and there was no problem with the babies at 36 weeks, I imagine it would have been crash C section and everything would be a celebration. That was not the situation. Of course though, her having a complicated medical situation complicated my health and safety as well. if her head swelled to those proportions. Her low muscle tone made her harder delivery, right.
P: Yeah,
K: there are things that was no longer a straightforward pregnancy. So the idea of going rogue in the woods was quite dangerous. It was really not a good idea. For my well being,
P: I mean going rogue in the woods wasn’t high on the list was it was on the list.
K: no, it was a last ditch effort. It was like if nothing else, and I didn’t know them, but I do know now, because Dr. Herring told me that if what you really want is hospice and hospice, you should hit up Johns Hopkins because Johns Hopkins has an infant hospice program, most hospitals don’t.
P: God..So much more complicated than politics allows for it to be.
K: It’s extremely complicated.
P: So I’m hoping that people in Colorado are supportive.
K: oh, God, I love them my trauma that I have done a lot of PTSD work on everything. Basically already happened. Once I landed in Colorado, I was so well held that even though this was extremely sad, and extremely hard to not have trauma from my clinic.
P: good
K: Yes, it is. It’s amazing. Not a guarantee, but that’s the way it was for me it was that I felt so safe and so loved in the care of my medical team. It was enough for me to get through it. So day one is counseling, and then euthanizing. Injection. So at the end of a lot of education and testing, just he won’t treat anyone that he’s not he doesn’t feel can safely go through the procedure. And then there’s a lot of like, this is what’s going to happen. Do you consent to it. I signed my consent. And Dr. Pan was my witness. He removes me from my husband for that because coercion would be a terrible thing in this situation.
P: Yeah, yeah
K: And he really wants to feel like yes, this is this is making a decision and they delivered a euthanizing injection to my baby’s heart, and that was just emotionally devastating. Pain wise, it was it was just like an amniocentesis. It’s just a needle, just one shot. Emotionally. It was so hard. And I remember at the end, he asked, How are you feeling? And I just burst into tears. I said, I’m just so sad, which was great for him because he just wanted to know I wasn’t in some sort of medical shock. You know?
P: Yeah, yeah,
K: he gave me some tissues and have been nurse stayed with me for a long time that day. I thought I wanted dinner. We’ve been at the clinic all day and you can only bring book into the clinic. That’s it. You’re well in the book. Because espionage is such a tactic of the right to lifers. And when we left I thought I wanted dinner, but she moved she hadn’t passed yet. And I was like, okay, scrap that and I went back and lay on the hotel bed until until the movement stopped and she passed away. When I stood up my belly, which had been like so high and so tight was just just drooped like the life has gone. She just drooped so hard. That was emotionally the worst part. After that there were two days of laminaria laminaria these little seaweed sticks that absorbed the water from your body as well. So the first day, they inserted them about hurts, but it’s only 10 minutes of my life
P: they insert it in your cervix?
K: into the little hole in the cervix, and then they pack the vagina so it doesn’t fall out in the packing has iodine in it to prevent infection and then over the course of the day, it gets bigger and softer. That’s a we took a drive into the mountains we just sort of it was like a weird sightseeing trip. We just went around and we’re in nature went out to dinner the next day. Again, they take the old luminaria out put new ones in that day it started getting cramping and I had to take medicine to make sure I wouldn’t go into labor. I remember taking a little walk in a little park and feeling like I’m gonna throw up now. I’m just taking it easy the rest of the day and then the last day the fourth and final day of procedure. This was a Friday this was 36 weeks zero days from the last menstrual period they induced my labor.
So they gave me Pitocin and the contraction started and I came in four centimeters dilated. Do you remember that first story with the 19 hours of labor? I was four centimeters dilated at 19 hours with my first
P: Wow.
K: And this labor was I have never had a child without some form of pain management right like I have had the epidural so I was a little bit afraid that I wouldn’t be able to do it. But as soon as I got into labor, I sort of got into that rhythm of the body. I go way inside when I’m in labor, and when I close my eyes, I actually see beautiful visions. When I’m in labor. It’s like this altered state of consciousness just like almost like a trance state. And that happened and it was very supportive. I saw very beautiful things on the inside of my eyelids and I knew it wasn’t real. It was not not confusing or disorienting. It was just beautiful. So I labored for two and a half hours. And then I felt like I had to pee very, very badly, very urgently very quickly. And so they hobbled me over to the toilet and I couldn’t pee. Now I know her head was in the way she was descending. My body started pushing and I had never experienced that before because I’d had the epidural. And my body just started pushing and I was screaming I’m pushing I’m pushing. abductor hurt was like stop pushing, which is so silly. It’s such a silly thing to say. It doesn’t make any sense.
P: As if you can control it.
K: Exactly. This was not voluntary. This was not on purpose pushing…it was extremely powerful. So I did manage to get on the table and I delivered my baby into Dr. Hearns hands and he does a quick little evacuation of the uterus to try to prevent a bleed like the one I had, but it was not invasive. The way the other one was. I mean, I’m sure he took his scope and went in but it did not feel the same. It felt okay. And then I went back to rest. Then after some time, he brought my baby to me so that I could see her body so that I can do and really glad that they gave me that opportunity. Because I really just had to see.
P: Yeah, this seems completely humane.
K: Yes. It is humane… It is very sad and very human. And so I got to view my baby and after him was there and he asked me if I’d like more time but what I knew when I saw my baby is that she wasn’t there. My baby. This is just her body.
P: Yeah, I can’t imagine a more caring choice than the one you made.
K: Yes, I don’t want was made already. Yeah, it’s so much love. It was the only thing I could do for her. I did the best I could
P: Do they Like do they have a funeral? Or how do you manage it from there?
K: No, that’s a good question. So I had signed up for private cremation. And I went home the next day and that was non optimal. But I didn’t know it’s not optimal to not even 24 hours postpartum women on a flight home like really not great. However, I was the one who booked the tickets and I had to get home to my child. I’d been away from my child this whole time. So you know even though Dr. Harun didn’t love that I was going the next day. What are you going to do? Right? So we flew home. It was my 30th birthday.
P: Oh my God
K: The next day was my 30th birthday. And I didn’t cancel my party because it was only very close family friends and I knew they’d want to hold me so I said yes, we’re going to go ahead with it. And my milk came in at my birthday party. And it was just like so freaking sad. But a couple of weeks later, my baby’s ashes came in the mail. Just like a little like a little handful pouch of ashes. And I hung on to them for a year and we spread them on her first birthday and never had a funeral. But we did go to the beach as a family and spread the ashes.
P: That sounds healing I mean some kind of ritual around fairly tragic ends seems like a way forward.
K: totally. Yeah. Ritual is really important and it’s powerful and it sticks to parts of us that logic and reason you just can’t. Yeah. So I learned to appreciate that I was a scientist. I was trained as a scientist. And so I have learned to appreciate ritual more and more through my grief experience and through the holding of other women and other parents in their baby loss and infertility journey.
P: Yeah, I think that the kind of autopilot aspect of it. That tells you these are the 10 things you’re going to do to get through this period and this set of things has come from people who have already experienced this and I think that seems really helpful.
K: Totally. Yeah, I found a support group and peer to peer support around something that is as rare and big and taboo as later abortion has been extremely important to my healing. More important than therapy. Peer to Peer Support has been more productive for me than therapy has been.
P: That is amazing. And getting a lot out of it. That is for some people, it may be hard to relate to just by definition because we’re things don’t happen often. And so there just aren’t that many people who experienced this. We had a rare issue in our pregnancy. And it is so unnerving to be on that edge where even the doctors don’t really have much for you and they can’t say what’s going to happen. And it’s just it’s a really tricky place to be. So I’m so grateful that you were able to kind of suss out something to do some way to manage it.
K: Totally, totally. And now I’m at Space folder, that group so it’s called the ending a wanted pregnancy. It’s just an online support. Group. You go to the website, ending unwanted pregnancy, I come to get into the Facebook group. And it’s, you know, basically it’s non optimal. But it’s a way to connect in with rare things as you know, like
Like if you have to.
P: Yeah,
K: look far and wide. Yeah. Sometimes doing something global like that is the way to go for rare support.
P: It seems like a particularly hard space because, yeah, there is so much emotional and political weight, and all these decisions and all these outcomes and those things are so black and white and not nuanced and not helpful. And this is kind of experiential, right? So if you have no experience with this, it’s very easy to say I would do this or I would do that and it just, just like birth, it feels different once you’ve been through it.
K; Completely. Like if you had asked me before any of this happened, would you ever have an abortion and like when you’re eight months pregnant? I would have been like, Oh, of course not. That’s ridiculous. Who does that? Right? Then it’s like, in a situation, and that’s the best I can do. Okay, but I do it. You know, so
P: also the truth of the better is the people who do that or people in your circumstance.
K: What I will say is that if an action seems extreme, and I would argue that getting an abortion when you’re eight months pregnant is a pretty extreme thing to do.
P: Yeah,
K: it is because the circumstances are extreme. And I never want to speak for everyone’s circumstances, because there are many different ways circumstances can be extreme. But I have profound trust that if someone’s doing something extreme, because her circumstances are extreme, yeah. I trust her to know that we’re not perfect. It’s not like everyone does the best all the time, but I really would trust a woman and her family, much more than I would trust the government.
P: I totally agree. Oh, it sounds like your family did a lot around that pregnancy and birth and
K: yeah, we did. And I will say that my husband and I very much in stuff and together in our crisis. But in grief, there is no together in grief.
P: Yeah,
K: there’s no company in grief. Grief is incredibly lonely. So sometimes when I would want to ritualize he would need not to be there. What I ended up doing for my family is introducing two days of the year, when I bring them into my experience of virtualizing on is girl’s birthday. Baby’s birthday. The day actually birthed her from my body in June. And so what I do that day, I ask LC her sister and now we have another Sister Lucia. I asked them how would you like to recognize your sister’s birthday? Their kids, so it’s like, let’s eat cake. Let’s go out for ice cream. Let’s go to the beach. You know? That’s great. I just let them invite it. The other day of the year is Day of the dead. You make an altar. You put pictures and tell stories about the people in our family who have passed not just Laurel but definitely she’s prominently up there. And then we paint faces, you know we have a nice meal the beautiful holiday that I have made it into my family space just as a place that feels right for a family to remember together.
P: You know I like so much about both of these is that it is a way of keeping her in your life in a positive way. So it’s not I mean the whole thing was tragic. And that’s true and that happened. But there’s something to be celebrated about Laurel. And it’s so nice that you and your family have found a way to be with her in a in a positive way. That’s not painful.
K: totally…Yeah, and that’s the way I want it. I don’t want to like put the pain of this onto my daughter’s sometimes what I find is that with LC who was two her understanding of it grows with her every year. I think she remembers actually she may not remember everything but I think there’s part of her that remembers in her understanding gets a little more mature. It really shifts every single year whereas Lucia who was not born when this happened, she came later. Forgets she even ever had another sister which is fine. Yeah, that’s completely fine. So I want her to know about her family in a way that doesn’t like force her to be sad about it if she’s not because she’s Yeah.
P: That’s amazing. Thank you so much for sharing your story. If there’s anything else you want to mention,
K: I would love to so what group is my volunteer work I also do advocacy and activism as as volunteer. But I have changed my careers to help women and families who have been through loss like this full time. I’m a love sex and relationship coach because what I find is that the fallout is all in matters of love, sex and relationship coach. So I’m a somatic coach and I work at night bloom coaching.com If anyone hears this and it’s like, this is a person I want to help walk with me through the through the grief or help me integrate my trauma I am not a therapist. I cannot diagnose or treat PTSD. But certainly I have found the tools I use to be extremely supportive of living more richly and fully after loss.
P: Sounds awesome. Thank you so much.
K: You’re very welcome.
P: Thanks again to Kate for sharing her story. Her experience is a powerful example of the nuances that color pregnancy–how complicated it can become in a short time span. Interviewing Kate and editing her story, I’ve listened to it a few times now and still have a hard time getting my head around all the desperately difficult things she and her husband had to do to deal with the sharp turn in the health of her pregnancy–the shocking medical news, the flight, the razor wire around the clinic, the procedure itself, and her milk coming in when she got home. That they did, in fact, manage it with the help of some extraordinary doctors and nurses is a testament to their strength. According to the most recent figures from the CDC, in 2019 almost 93 percent of all abortions happen before 13 weeks. Less than 1 percent occur after 21 weeks. I particularly appreciate that Kate shared her experience to give voice to what it looks like to be in this one percent, to show the heartbreaking choices some people have to make and how the burden of society’s judgment and legal obstacles make it even more difficult…I think her story dramatically illustrates the importance of allowing families to chose how to meet and manage very challenging circumstances.
Thank you for listening.
We’ll be back soon with another story of overcoming
Episode 59: Experiencing a Late Term Abortion: Kate’s Story