Tag: screening

 

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