399: What if your doctors weren’t allowed to help you?

And I think that was the worst of it, this feeling of not understanding what was happening and not understanding why it was happening. Just this kind of awful quiet of no one's coming to help me. From Wondery, I'm Whit Misseldein. You're listening to This Is Actually Happening. Episode 393. What if your doctors weren't allowed to help you? I was born in June of 1988. My sister was six and a half, and my parents had been living in northern Illinois for a couple years. My parents met at college. My dad had recently gotten out of the Army and was going to college, and my mom was there to study art and then got married in 1980. My dad was in Korea for a few years. He was on the DMZ and was a military policeman in the army. He had a lot of trauma from that experience that he's dealt with over the years. But despite having PTSD, my dad has always been calm and kind and there was never any violence in the household. It was a pretty middle-class upbringing. My dad worked full-time. My mom stayed home with us. I have great memories of doing different projects with my mom. She's an artist and so there was always some sort of craft or project. It was a happy childhood. When I was nine, my parents got divorced. I found out later that there had been problems in their marriage for a while. My dad's PTSD, I think from being in the army, made it difficult for him to share the challenges that he was struggling with, the terrible things he had seen when he was in the army. I obviously wasn't happy about the divorce. I missed my dad, but it actually started a lovely ritual. I missed him a lot at first, and so he would call me every night before bed to say goodnight to me. It actually brought us closer in some ways. I started figure skating when I was nine and started competing and started being in ice shows and just absolutely loved it and wanted to be a professional figure skater. Figure skating is so athletic and also so appearance-focused. looking back on it with a lot of therapy. I know I had an eating disorder, but at the time it was just seen as, oh, teenage girl, figure skater, not anything too serious. The phrase going around the rink was lose five pounds, gain an inch in height for how high you could get your jumps. thinness was prized above all else. So I really sought thinness at all costs. I was really driven with wanting to be a competitive figure skater. When I was in eighth grade, I was homeschooled for a year because I'd just been so miserable in junior high. Then I went back to public high school for a year and then ended up being technically homeschooled again and graduated high school when I was 15. I just leapt right in at the local community college. I was very driven, not always in a good way. I really wanted to be a professional figure skater, but I also was really passionate about science and was starting to think about my future as a doctor or a scientist and wanted to be potentially an FBI agent. And so I was like, how can I do both of these things? It was just in my nature to want to strive and succeed and be impressive. All these things that put a little bit too much pressure on me. It was this internal feeling of wanting more and more, which eventually led to fund things like anxiety and not doing well with perfectionism and things like that as an adult. It always felt like chasing things. I think a lot of it was that I always wanted to be like my older sister. I saw her in college doing these cool things and I just wanted to be just like my sister. I eventually decided I wanted to be a scientist, which was heavily influenced by loving the show The X-Files. Dana Scully on the show. and my sister was a physics major. I decided I wanted to be a biologist. I got accepted to UW Madison and so I went to Madison. I had just turned 17. When I was 18, I ended up getting diagnosed with endometriosis, a chronic pain disease, and had never heard of endometriosis. This was all kind of new territory for me. It was depressing and really affected me emotionally because it was such a huge feeling of betrayal by my own body that I was only 18 and was suddenly in pain all the time and was told that this could just be my life. I was told at the time that I may never have babies. I may never be able to get pregnant. They weren't sure if I was going to need a hysterectomy or if I would just be totally fine but in pain. So I feel like that experience really knocked me down and also foreshadowed feelings of some lack of control with my body and my decision making. Suddenly, I was in pain all the time and being told that they didn't know what the outcome would be. I had never wanted kids. I always had my sights set on either athletics or science. But suddenly, I was being confronted with the fact that I might not have kids. I might not be able to get pregnant and was only 18. It surprised me that it did feel like so much of my identity suddenly, and it felt like these kind of choices that everyone else gets to make were potentially taken from me before I even knew that I would want to have a choice in the matter. I had never had a serious boyfriend. I was so focused on academics, but then suddenly I'm having to think about things like fertility. It was alarming and made me feel gross. I was working in a lab that studied endometriosis and meeting incredible women. A couple of them were married and pregnant. And it was just like seeing these strong, smart women that were getting their PhDs and also having babies was on the one hand kind of life changing. And then I remember going on a date with a guy. This was maybe a few years after getting diagnosed officially. He asked what sort of research I did in my lab, and I was describing it and describing endometriosis and didn't say that I had it. I was just talking about it as a disease. And he went, oh, gross. I was like, okay, you're out. There was no second date. But it was that sort of feeling of like, oh, women's health that made it hard to talk about when you're that young. I suddenly had no control over this aspect of my life and I had never dealt with anything that really shaked my sense of control before even struggling with figure skating and body image food was something I could control how many sit-ups I did was something I could control it was always you put in a you get out b now I was in college and struggling to keep up with my classes, in pain all the time. My grades really suffered. Then I was starting to apply to medical school and got rejected from every single medical school I applied to. But I graduated college at 19, was working in biological research for the ovarian cancer endometriosis lab that I had been working in prior to graduation. I worked full time for a few years and really loved what I was doing. When I was 21, I met my husband and I was 23 when we got married. I was so nervous to tell Zach that I don't know what this holds for me in terms of me being in pain all the time, in terms of having children. And I had this whole spiel about my medical history and having children. And he goes, just so you know, though, our mutual friends already told me all this. It's like, oh, okay, great. He was well aware of everything right from the start. I was raised Catholic. My family was never super church going. It wasn't until college when I started regularly going to church again. And I actually, when I met Zach, I was in the process of becoming confirmed. I decided as an adult that I wanted to finally make that step. We ended up finding a church that was very welcoming and affirming and truly seemed to be welcoming to all. The more I went, the more it was a way for me to try to find a bigger meaning in life and carve out a spot in my week for thinking about something besides myself. During that time, the more I spent time talking to Zach about what I wanted to do and med school, I kept saying, I wish I could just get my PhD in something fun like anthropology. And eventually he just went, OK, how about you do? And I was like, OK. And in early 2012, I got accepted to graduate school at UW-Milwaukee in a program for anthropology. The grad school early marriage years were some of the best of my life so far. We had our little house on the east side of Madison. I loved grad school. I got straight A's. I was fascinated by what I was learning. It was wonderful. Up until meeting Zach, I had thought, I don't want kids. I never really felt any particular maternal instinct. Zach and I at one point had the conversation and I said, yeah, I don't know if I want kids. And he said, oh, I always thought I'd have them. He just seemed so on board with co-parenting, with not leaving me to be the default for everything. We started thinking about it. And then I think I pretty quickly warmed up to the idea and was like, I didn't want kids, but I could see wanting kids with him. We still didn't really know if it was going to be an easy or more difficult process for me because of the endometriosis. But there came a point in 2013 when we decided to go for it. Again, we didn't really know what that was going to be like, given my medical history. The endometriosis has not been cured. It has not been solved. I, to this day, am in chronic pain, but it didn't end up affecting my fertility. So shockingly, it happened right away. I was able to get pregnant almost immediately in November of 2013. That first pregnancy was textbook. We had William. William was the cutest little baby. It was such a ride. It was chaotic and sleepless, but he was just the best. We got William baptized and we had our little unit of me and Zach and William and Rufus the dog. In early 2016, William was just about two and I actually found out I was pregnant. We were really excited. My pregnancy with William had been pretty textbook and he had been a pretty easy little guy and we had every hope that we would have the same sort of experience again. I was actually scheduled to go to Cyprus for a month that summer, 2016. I was still in grad school, and I needed to do a field school to learn how to actually be an archaeologist and dig. And so I had to make a decision, and I chose to do it. And so I got on a plane to Cyprus and left Zach at home with a two-year-old William. We'd be digging in the hot sun and I was homesick and missed William and Zach like crazy. But I remember my sister saying, yeah, but think about how cool you would have thought you are right now. When you were a teenager wanting to be Scully from the X-Files, how cool is it that you're doing this? when I was there I ran out of anti-nausea medication and was feeling really awful the woman who was leading the dig helped set me up with a Cypriot doctor the doctor did an ultrasound and she showed me a little swimming baby in there and I was so relieved and I remember asking her you're sure there's only one in there right and she said oh why do you ask and I said my mom was actually a twin and her twin didn't survive and my husband has brothers that are identical twins. So just wondering, and she was like, oh, well, you know, and just talked to me and made sure I had follow-up care in the U.S. when I got home. I got home in early August. We went to the follow-up appointment in the U.S. And the woman doing the ultrasound was like, just a minute, I need to go talk to someone. And I start worrying that there's no heartbeat. And Zach, who had been looking at her computer, was like, no, I swear she just marked fetus number two. I think it's twins. And I was like, no, I had that ultrasound in Cyprus. There was just one. Lo and behold, she came in and was like, you're having twins. The first words out of my mouth were, holy shit. I was so shocked. Just could not believe it. It was overwhelming, but in such an exciting way. It felt so perfect because my husband had his two younger brothers are identical twins. And there's all these cute pictures of Zach and his two little brothers. And so we were going to have William and his two little brothers are sisters. It felt kind of meant to be and also the biggest shock of my life. We ended up being told they were identical twins. They were boys. And so I was going from one boy to three boys. And it was so hard getting one infant to sleep through the night. And now I was going to have to get two infants and a toddler to sleep through the night. But it was also so new and exciting and special. I joined the Madison Mothers of Multiples group, went out to coffee with some other moms of multiples. And what double strollers should I be getting? In early September, the Mothers of Multiples have a big sale and currently pregnant women get in first. So me and My mom went first thing in the morning and got the double stroller and the double nursing pillow and the matching onesies and all the special twin things. It was exciting too because it was something that I could kind of bond with my mother about I remember her calling me all excited to talk about her experience with her twins And it was exciting and scary And I had a thousand Excel checklists of things that needed to be done, but it was so exciting. Because I was having identical twins, they needed to do every other week ultrasounds to check for something called TTTS or twin to twin transfusion syndrome, which is a disease where the arteries and the placenta that go to one twin connect with the veins that go from the other twin. What happens then is that one twin gets way too much blood, one twin doesn't get nearly enough. This is something that can happen in 10 to 15 percent of identical twin pregnancies. They had me set up with maternal-fetal medicine specialists because this was considered a medium to high risk pregnancy. Everything had been going really well. The boys were both growing well. And I'd been having a few of these kind of every other week checkups with everything looking fine. On September 27th, I had my 18-week checkup. This was just another TTTS check. A doctor came in and said that there were a few abnormalities that they saw with one of the twins and that they needed to speak to us. I was halfway joking and I said, oh, should I call my husband to come be here? And she said, yeah, you should call your husband. I called Zach and I said, I don't know what's going on, but they said you need to come over here now and they won't tell me what's going on until you're here. they were seeing that baby b had some problems with his heart it looked like his heart was either slightly malformed or not functioning properly and they also noticed some things like micronathia which is a too small chin and some other kind of smaller defects with baby b and baby a looked totally fine they said they said well is this ttts and they said no we don't think so because baby a looks fine. We think it might be something genetic. They decided to do an amniocentesis, where they take a needle into the amniotic fluid, which can then tell them about the genetic makeup of the twins. Amnios carry their own risk of preterm labor and miscarriage, but I was doing what I was told needed to be done. And Zach and I sat around the little garden area and waited for the amnio and it was terrifying. That week was just waiting, which is something I've always been really bad at. The next week I saw the perinatal cardiologist and she did an echocardiogram on each twin. And she freaked me out a little bit, honestly, because she was like, this looks like TTTS. I really think you need to go to a TTTS surgery center to be evaluated. and I was in our bedroom crying, just didn't know what to do. And I felt like it was hopeless because some of the treatments for TTTS are surgical. So they can go in and actually sever the connections between the veins and arteries. But there are options like selective reduction, which is when selectively abort one of the babies in order to save the other. And that was like the ultimate worst case scenario in my brain, having to decide that. I said, I don't want to have to go through all this just to be told that we're a lost cause. And she said, no, I don't think you're a lost cause, but I think you need to go now. This was late September, early October 2016. They sent us to Cincinnati because Cincinnati had the closest, renowned TTTS surgery center. we drove the whole way there I spent praying to Saint Jude and just saying please save them that if he could perform a miracle I would name one of the babies Jude we got to Cincinnati and were exhausted that whole next day October 4th was this big testing day we met with a million people. The end of the day, we met finally with one of the cardiologists and he said, yes, this is TTTS. And yes, we can surgically operate on you. But we're a little bit concerned because it looks like the bottom of my uterus towards my cervix was possibly starting to dilate. But I have had a baby. This doesn't feel like that. I felt fine. They said, we'll send you home or back to the hotel and they gave me some progesterone. We went back to the hotel and ordered Chinese food and put on Seinfeld and felt like such a huge relief because it was TTTS, which is something that they can treat through surgery and felt like everything was going to be just fine. We went to bed and they had given us the nearby labor and delivery number just in case. and said, just in case you feel labor start to come on, call them instead. The next morning, this is October 5th, I woke up and just felt really weird. Felt all this pressure, like they had been saying. Then I eventually felt like I couldn't walk. Then I started to feel some contractions. I woke up Zach and I said, something's weird. I think I'm in preterm labor. we got up to the labor and delivery floor and I was just confused and scared and a wreck the attending physician checked me out said that yes I was three and a half centimeters dilated they gave me some drugs to stop my labor they were doing everything they could to keep those babies inside the labor slowed down the contractions stopped but the problem then was that they still had TTTS and so they couldn't operate on me like this. It was a question of what do we do then to stop the labor but also to save the babies because untreated TTTS is fatal in 90% of the cases. There was the attending physician and one of the MFM fellows. They were like the most patient, kind people. It was clear they were becoming increasingly desperate throughout the day. They were trying their very best, but they didn't know what to do either. The fellow came and sat with me and I said, listen, I'm a scientist. What are my odds here? Let's say we do everything we can. Let's try the antibiotics. We keep on the drugs to stop my labor. we do everything at our disposal, even though surgery no longer is an option, what are my odds? And he said, there's a 90% chance that both of them will die. And I just lost it. I so vividly remember just like grabbing onto the bar of the hospital bed, just wailing because it was just so horrible. Then the question became, how much can my body stand? At what point do we say, let's let nature take its course and just let my body go into labor? I knew they would die if that happened. And if it had been a question of my life or theirs, I would have chosen theirs hands down. But it felt like more and more it was becoming a question of my life and theirs. and I still had a two-year-old at home. They were monitoring things like my blood pressure and kidney and liver function and my water hadn't broken yet, but then that increases the risk of infection. And so there was the possibility that this could be dangerous for my life too. I asked the doctor, what if we do just let my body go into labor? What happens? And he said that in the state of Ohio, there was a second trimester abortion law that made it so that they could not help deliver a baby that was pre-viability, which mine were. I took this to mean they can't give me things that will speed up the labor. They're not going to give me Pitocin. They're not going to artificially break my water. They're not going to do these kind of artificial things to make me go into labor. But I didn't think this would be a long, drawn-out process. I assumed that my body would go into labor and then it wouldn't take that long for me to dilate enough to give birth to them. He warned me that there was this law that was affecting the care that I would receive, but it didn't seem like something that was actually going to affect me. I thought they just couldn't speed it up. They couldn't help a woman who is in labor with pre-viable babies deliver more quickly. The law is intended for partial birth abortion in the second trimester, meaning that for someone who is further on in their pregnancy, but pre-viability, which is usually around 23, 24 weeks, if they start to go into labor, you are not allowed to help them have their baby more quickly. The idea being that if someone doesn't want their baby and somehow causes preterm labor, then the physicians can't assist them with that process. They can't artificially help a baby be born knowing that it will die because that essentially would count as a partial birth abortion. The rule on the Ohio books is that you can only do this if the mother's life is in danger and if two physicians sign off on some sort of form saying that the mother's life is sufficiently in danger to deliver the infants to save her life. Otherwise you have to try to keep them in at all costs. Zach got back from getting her stuff from the hotel and I had to explain all this to him. It was a hard choice to decide what to do next because to him 90% chance of them dying still meant 10% chance of them not. This is when one of the nurses suggested to talk to the chaplain to get some guidance. She said, we have a Catholic priest. Would you like him to come talk to you guys. And I said, yes. And he came and we explained the situation and said, I don't know what to do. I trust the doctors and I trust that they're doing everything they can. And this seems like a lose-lose situation. And we're debating letting my body just go into labor. And I said, I'm worried though, that God would be mad at me, mad at me for not doing everything I possibly could to save them. That it felt like letting my body go into labor was giving up. And I didn't want any chance of doing the wrong thing or of God looking down and saying, no, those babies still had a chance. Don't do it. The priest said, no, I don't think God would be mad at you. I think God is sad with you. He had brought a prayer shawl and he wrapped me in it and said a prayer and gave me the anointing of the sick and said the last rites for the babies. After talking to him, we both felt some clarity that there's no stopping this. That either I'm going to be stuck in this hospital bed for weeks and they're going to die from the TTTS, or I'm going to go into preterm labor and they're going to die from preterm labor. We decided to go off of the meds that were keeping the labor at bay. It was the evening of October 5th. After maybe half an hour, 45 minutes, I started to feel contractions again and they felt closer and closer together and I was becoming in more and more pain. And at a certain point, I didn't get why no one was coming. to me. They would come in and they would check my blood pressure and do more labs on me. And then they would do an ultrasound on the babies. And it would be like, yep, Helen, you're doing worse. Babies are doing worse. And meanwhile, I'm having terrible contractions. I figure I have to be dilated enough at this point. And no one is coming. There's no doctor coming in to check me. It later turned out that, yeah, my water had broken, but there wasn't the risk of infection yet because it hadn't been long enough. I later put together that they were waiting for my life to be suitably in danger. The two physicians could sign that form saying that they could deliver my babies because my life was in danger. The risk of hemorrhage was increasing. There's that window after your amniotic fluid breaks of six hours, I want to say, before you start to have to worry about some sort of infection getting in. And so everyone was just essentially watching me decline. I got an epidural and I got IV drugs and they just kept checking me, kept checking the babies. Everyone was doing worse and it was the middle of the night. Finally, the pain subsided a bit with the medicine and fell asleep for a couple hours in the bed. I was so lost in the fact that my babies were going to die. I think Zach would say that he was more concerned about me during this period, but I was just confused because I didn't get why no doctors were coming. I knew I had to be dilated enough. I knew my contractions were close enough apart. and I just felt abandoned. It was the middle of the night in the hospital and no one was there and the nurse would check on me, but no one was like, let's see how far along you're doing. Let's see if we need to start thinking about pushing. It was just silence. It felt like no one was coming. No one was coming. It was confusing and terrifying. I didn't understand why it was happening because again, I still felt like, well, okay, don't give me Pitocin, don't artificially break my water, but I didn't get why no one was coming to deliver them. And I could hear other women screaming in labor and people obviously attending to them, and I was just me and Zach and the nurse monitoring my decline, the baby's decline. And I think that was the worst of it, this feeling of not understanding what was happening and not understanding why it was happening. I had done this already. I knew what labor was going to be like. I knew what to expect. But then just this kind of awful quiet of no one's coming to help me. I later found out that because I was able to a few years after this I was able to talk to that fellow who had been overseeing my care on the phone and he told me that that morning him and the attending physician were going to go to the medical board and advocate for me but it turned out they didn't need to because my water had broken and so I was suitably doing poorly enough that they could justify delivering the babies now. They came in that morning and checked me and decided that they could sign that form, that they didn't need to go to the medical board. I really want to say that I did always truly feel like the doctors were on my side, that it was clear to me that the care I was receiving was partially imposed by the state of Ohio but that I was working with physicians that were treating me with empathy that were on my side that were doing their best, and knew we were in a shitty situation. They decided they could help me deliver, and so they started getting the room set up. Two nurses came in, Melanie and Annie, introduced themselves to me and said, we're still each here for your babies. There was always that level of compassion from the staff. Baby A was delivered first at 8.48 a.m. on October 6th. We named him Theodore Nicholas. He was born alive. He was tiny and had a little patch of dark hair on his head. and he looked a lot like William. They handed him to me and it was like in a movie where I didn't know where the sound was coming from but it was me wailing because it suddenly hit me that he was there and alive and beautiful. He was all tucked up in a blanket and I gave him a kiss and he was alive but we only had a couple minutes with him. They cut the cord and they were checking me out and it looked like the next baby wasn't emergent yet. They kind of sat in my bed back into a more normal position to give us some time to just be with Theodore. I held him for a bit and then Zach held him for a bit and suddenly he notices that there's all this blood underneath the blanket and that there's blood dripping down from where I'm laying on the bed. He called the nurse. They rushed in and it turned out that Holden was being born and was stillborn and I was starting to hemorrhage. Holden Benjamin was born at 9 17 a.m and he was stillborn. They didn't hand him to me right away because I wouldn't stop bleeding. They tilted the bed back real quickly and started massaging my uterus and gave me some Pitocin and were trying to stop the hemorrhaging. I heard one of the doctors say, we need to get some Pitocin in her quick. And just the tone of voice and the speed at which they laid my bed quickly back, even now, if I'm tilted back suddenly, I have a bad response to that because it's so reminiscent of that quick till to the hospital bed so that they could start working on me. I wanted to know if he was okay, and obviously he wasn't okay, but my mind was just on, I want to hold my babies. Zach would say that the memory of me hemorrhaging is pretty traumatic for him, whereas I was just living in it. I just wanted to hold them. They got the bleeding under control eventually and told me that Holden was stillborn. They wrapped them up and handed them to us. I'm holding two babies and trying to like make sure they're still comfortable, make sure the blankets aren't covering their mouth and nose and all the things you do with babies. But at that point, it hit me. I was like, oh no, they're dead. I don't need to make sure the blankets are comfortable. But I've talked to other bereaved parents about this too, that they've had similar reactions where it's just, you can't make it make sense in your head yet. We spent some time just holding them and kissing them. And we told them that their grandpa was waiting for them, that Zach's dad, he would be in heaven waiting for them and that they should go towards him, that he would take care of them, that he had raised twin boys already and would take good care of them for us. And at one point, the nurses came to get them and said they were just going to get some basic measurements and took the little isolettes that the babies were in. It was taking a while and I was starting to feel anxious and like, where are they? What's taking so long? It turned out that the nurses had taken pictures for us and made us a little scrapbook with pictures of them and their handprints and footprints. And that just meant the absolute world to me. That whole kind of first hour, I'd say it was a bit of a limbo period where I was still feeling like they were there with us. I was checking on them. It didn't feel like they were alive. It didn't feel like they were dead. they were just there with us. At this time in my career, I had been a biologist for so long and then studying anthropology, specifically bioarchaeology, so human skeletal remains. That prior semester to when they had been born, I had been taking a class called the archaeology of death and talking about how we memorialize people and studying skeletal remains and talking about different traditions related to death. The nurses took them to get their measurements and handprints and there was something about them leaving the room and then being brought back to us where my science brain turned back on and I felt then like, no, they're dead. These are their remains now. These really were just their bodies that I was holding. We asked then, what do we do now? We're in Cincinnati. We have these two newborns who have passed away. What on earth happens now? They sent a social worker to come talk to us. She was too busy to be compassionate and just came in was like, okay, really matter of fact, well, Theodore has a birth certificate, sign here, blah, blah, blah, you know, spell Theodore. And then here's his death certificate. And there's all that paperwork. Then just real casual is like, oh, and because Holden was stillborn, and I was at 19 weeks and six days. So one day shy of 20 weeks. And because 20 week is the cutoff for miscarriage versus stillbirth, they were like, so because of that, he just has a stillbirth certificate. So Theodore has a social security card and all these kind of typical trappings of being a person and Holden, his identical twin brother, has none of that. That's when some of the anger started to set in. The state of Ohio had been so invested in these babies 12 hours ago that you were going to risk me hemorrhaging and going to make sure they stayed in at absolutely any cost. And now they're born, and Holden doesn't even get the same sort of respect, it feels like, as his identical brother does. They would have cremated one of them for us for free, but not the other. This is all going on. I'm still in the hospital, and Zach is having to go seek out funeral homes in Cincinnati by himself to find a funeral home that would, for a reasonable price, cremate them both. This is when I started to get really angry by the position we had been put in and feeling like there was a good chance that they'd been born 12 hours previously. Holden might not have been stillborn. He might have been living too if they would have just helped me when I wanted and needed to be helped and would have then gotten that kind of symbol of personhood that his brother did, whereas they forced me to be in labor for about 12 extra hours than was necessary. So then I hemorrhage and the stress of all that kills Holden. And now they're just so cavalier about what happens to us next. they kept me for one more night put me on an antepartum floor so a floor with pregnant people because i told them i couldn't bear to be on a floor with living babies the actual postpartum floor they were still not totally comfortable with where i was at blood loss wise and for my own sake, but I just so desperately wanted to be out of there and wanted to be home and wanted to see William. We stayed one more night in the hotel again, and then we had to drive back to Madison. I had been pregnant with twins when we left and came home empty-handed. The day we got home is when my milk started to come in. No one prepares you for that. All the postpartum stuff still applies when your babies have died. Your body is still going through the same thing, but you don't have infants there with you. My family drove up the day after we got home. They drove William back up because I was just desperate to see him. My mom and sister helped me clean out my closet. I just laid in bed. My sister sent out some emails for me. Everything was a jumble between logistics and emotions and ridiculously awful and ironic. There was one day when the postman came with a box that said human remains in it and he handed me the box that held their cremated remains and a stack of mail and in the mail was the hospital bill and just feeling such intense anger that this had happened to me and so confused. There's all the logistical things that had to be done. I emailed my professors and was like, hey, I'm out. I don't care what you do to me, how you penalize me. It is October and I will see you in January. I didn't have FMLA. I was a grad student and both of the professors that I was working for didn't tell HR and let me keep getting paid. And that is like some of the nicest things that anyone has ever done for me. Then just having to parent. In some ways, it was such a blessing to have William there and have somebody to hug and to love and keep me in this world. But on the other hand, sometimes just wanted to just lay on the couch and cry, and I couldn't always do that with a little one at home. We had them cremated. We decided to have a memorial service for them. We had it at the monastery where Zach and I had been married. One of the sisters at the monastery set a lovely service for them. And it was so surreal to be touching up my eye makeup before the funeral in the same room where I had been putting on my wedding veil. There's a picture of me and Zach and William and the twins' urn. Zach's father had been taking classes when he retired and learning how to be a ceramist and had been making some really beautiful pottery. He had this one vase that had two separate openings, so we used that as their urn so that they could be with their grandfather. Grief is a weird thing I've learned in the psychological world. It's hard to tease out what is the grief itself and what is this competing PTSD that I was eventually diagnosed with. Stuff like being at the dentist's office sometimes sets me off because when they start to move that chair back, I start to remember that feeling of the doctors going into panic mode and pushing my hospital bed backwards, feeling abandoned and scared. All these symptoms of the PTSD that I now have left me with this strong sense of unsafety in the world. This kind of unbalanced feeling of no one knows what's going to happen next. The hardest part of it was this feeling lost and feeling so powerless while it was happening. It's been really hard with that same sort of feeling of blame for my body. TTTS is just a thing that happens. There's no way that I could have prevented that. But sometimes I blame myself for not pushing for a TTTS diagnosis sooner, not seeking out this and this and this, for not doing enough research on it. That feeling of not being able to trust my body has returned and is something I still really struggle with, feeling like biology is out to get me. I'm a biology professor. I wish that I could understand and control and have prevented this. Early on, I had so much rage towards everything and everyone. I remember there was a night Zach was asleep and William was asleep and I was just so full of rage. I didn't want to wake anyone up. So I locked myself in our car and just screamed for a solid 20 minutes because I was just so full of rage and anger that this had happened to me and it had happened the way that it had happened. That there was not only nothing that I could do, but it also felt like I had been abandoned by the physicians. By God, I felt abandoned by St. Jude, who I had prayed to and asked to stop this. There are many stories of people finding comfort in religion after these types of terrible loss, and I just was just mad. I had some people, not close to me, but some people online say things like, oh, God must have needed another angel, or they're better off with Jesus. And I would think, no, I'm their mom. They're better off with me. The newborns need their mother and I couldn't be with them. And that felt like torture. Shortly after they died, I went with my friend Ellen and my confirmation sponsor to an All Souls Mass for All Souls Day. They included my boys in the program And I found some comfort there with the rituals. But I was still so angry that God didn't stop this. Angry that this idea of what God wants is what had put me through a portion of this hell in the first place. I just kept thinking about what if Holden had been born alive? What if I hadn't started hemorrhaging? what if this were a more peaceful experience and one that didn't crush me quite as much. I just couldn't figure out how the most torturous part of this had been because of this abortion law that was nominally rooted in Christian theology, but was just rubbing salt into my wounds. They were going to die, but it didn't have to be like that. It didn't have to be that scary and lonely. I could have had time with Holden, might have been in better shape afterwards myself if I hadn't been subjected to that extra labor. And I just felt so angry at God for putting me through this but also for this Christian theology that made the law the way it is And I kept coming back to the priest in the hospital saying that God is sad too That was like the one thing that felt true and comforting to me I never expected to be someone who would be impacted by an abortion law. I had a stable marriage and wanted children. I've always been pro-choice, even being raised Catholic. I always felt like it's not on me to impose my religion on others. After this, I had a few people say, you know, express surprise that they would think that I would be more pro-life than ever, seeing how even at 20 weeks, my babies were these precious and loved and all those wonderful things. But it really just cemented for me the fact that this is something that needs to be between a person and their doctor. That the Ohio law had no business being in my business. That this was something that me and my physicians should have been allowed to handle. This really just hammered home the fact that you cannot impose these laws and then step back and not deal with the fallout. This is intended so that someone doesn't start to put themselves in labor in the second trimester and then speed up their labor and kill their infant because they just don't want to be pregnant or something. But then you actually apply it and it's being applied to real people, many of whom I would say want their babies. It just is mind-blowing to me that people can create these laws with one set of circumstances in mind and then not follow them through to their logical conclusion, which is people like me. It feels so personal. I think I'm angry all the time. It's this low-level rage that this is my life, this has been taken from me, and that these men in suits decided how my twins would be born. I no longer scream in the car about it, but I think it's always there. I trusted my doctors. The fact that they were going to go to bat for me means the world. It also is just so ridiculous to me that, you know, it's essentially my highly trained physicians versus what some congressmen decided at some point who know nothing about medicine, probably know nothing about being a woman. And they are the ones who have made these decisions I was in Cincinnati. It's a big city. I was at a good hospital. But if I had been in Madison, this would not have happened because this was state law. The babies would have been probably born premature. The outcome would have been the same, but the method would have been different. And if I had been somewhere else, who knows if my life would have been saved as well. There's a thousand things that could have gone wrong. That's why it's up to a physician to treat a person because they are the ones with that knowledge. But they had their hands tied. They were being forced to practice medicine in a way that was not consistent with how they wanted to practice medicine. one of my good friends helped me get a recommendation for a therapist in madison who specializes in fertility and loss issues and helped me get connected with the group bereaved parents of madison they have a great program that gives you like a peer sponsor of someone who's been through a similar loss and being able to call her and talk about all the little different things that make twin loss in particular so painful and so complicated. And then being able to be connected with a really good therapist was life-saving. It really helped give me the permission to be pissed off and sad. My first therapist used a metaphor that when you lose a baby, a lot of people act like you lost the seed of something, but really you lost the whole tree. So you're going to be sad by all the milestones and the whole person that you're missing see grow up into adulthood. And having some of that framing and permission was really helpful. Because at first you start to feel a little crazy, like why am I not better by now? I felt a lot of comfort both in working with people who have worked with the bereaved and also reading books about people who have lost babies and feeling that permission of no you won't ever be the same. That there are people who have lost children 40 years ago who will tell you they're never the same and it's freeing to know that at least with certain people I don't have to pretend that it's anything else. When I think about myself prior to this loss, I picture myself in Cyprus swimming in the Mediterranean Sea with all the women I was traveling with. I was there pregnant and doing the work that I loved and everything just felt so much easier. Joy felt so much more accessible. While the loss of my father-in-law was really hard, it was still in the natural order of things. Whereas this, losing the twins, just felt like it slipped my life over. It's harder for me to find those moments of joy. It's harder for me to know who I am and what's important to me. I envy that kind of carefree person that I used to be that believed that things would be okay and that there was nothing I couldn't fight my way out of. That sort of naivete that I used to have is just gone. I remember one of my therapists saying that what PTSD is, is you not feeling like the world is safe anymore. And that's exactly what this has been. This showed me a side of the world that I didn't realize existed. After they died, it was so horrifying to me that I wasn't pregnant anymore. I also couldn't bear to think about any other babies. I just wanted them back. So we just decided to see what happened. I found out in February of 2017 that I was pregnant again. It was the least joyful pregnancy announcement. We were just stunned. On the one hand, it was comforting, but it was also like absolute terror constantly. In August of 2017, I had a partial placental abruption, was hospitalized for two weeks, and it was very, once again, traumatic and terrifying. I was bleeding in the hospital and remember saying to a nurse, I just can't have this happen again. and her like taking me by the shoulders and being like, this is a different situation. This is not happening again. I remember being newly postpartum and being in my therapist's office and telling her like, I know exactly what I would do for his funeral. If this baby dies, I'm on it. You see death around every corner, but he ended up being born healthy and is now a happy eight-year-old. In the immediate time after his birth, I was giddy with relief. I just could not believe that I had a living baby with me. It took a lot of therapy and talking to other people who've had what they call rainbow babies, a baby after a loss about kind of what a mindfuck it is, because you're grieving all over again for the things you didn't get with your other babies. There are all sorts of questions like, would he exist if the twins hadn't died? At the time, it felt so dire to have to figure that out. What does that mean about how I feel about him versus them? It took a lot of work to finally accept that I don't know if he would exist if they did too. And I don't have to. I can appreciate him and who he is and be really sad still. In 2019, Zach and I started a non-profit called the Marigold Foundation, which helps local families who have recently been impacted by infant loss or who are seeking life-saving medical treatment for a pregnancy. Our foundation gives monetary grants to families to be used for whatever they need, whether it's paying for funeral costs or hospital bills or travel arrangements. It's called the Marigold Foundation because Marigold is the October birth flower and it's also seen as a sign of healing in a lot of cultures. Over the years, it's led to some conversations with people that I wouldn't have expected. It's a club you don't ever want to join, but it's some of the just absolute best people to be included with. People that have been willing to sit in the hard parts with me and it's hard knowing that there's never an end, that this is something I'll have to carry for the rest of my life. I'm not healed and whole, but I can still show up. I can still laugh and still be a friend and still participate in society and love the children that I have and still miss Theodore and hold in like a literal missing part of myself. I oftentimes go back to this quote by the author Anne Lamott about how when you have a loss like this, it's like a literal part of yourself being chopped off. You're never going to regrow that limb, but you can learn to dance with the limp. That's what I've been trying to do over the last almost decade now is learn to show up for my family, continue with my career, be part of my community while still feeling like I have to tend to this kind of gaping hole. Feeling very much like I myself am in both worlds where I see my two living children who keep me afloat and keep me invested and then there still is that other part of me that is always going to be with Theodore and Holden. The story that comes to mind is a story about a man who's in a flood and is on the roof of his house and he's praying to God to help him. People in a rowboat come by and say, oh, you know, come jump in our boat. And the man says, no, no, I'm waiting for God to save me. So he waits a while longer and people in a motorboat come by and the people say, you know, oh, you're saved. Come with us. And the man says, no, no, I'm waiting for God to save me. I'm praying. And then eventually a helicopter comes by and lowers a rope and the man has the same response and is like, no, no, you know, don't worry about me. I'm just waiting for God to save me. Then eventually the man drowns and he gets to heaven and meets God and is mad and is like, you know, hey, I was praying. I was waiting. Why didn't you come save me? And God says to the man, well, what are you talking about? I sent you a rowboat. I sent you a motorboat. I sent you a helicopter. And that story was kind of always present in my mind after the twins died. There are a million ways through a million people that God showed up for me. From the way that my mom and sister went through my clothes with me, to the way that my friend from grade school checked in with me to the people that donate to our foundation that there are truly horrible things that happen but there are also such wonderful lovely people that show up for each other and have shown up for me it was there that I kind of felt more close to God in seeing that there were all these people that were showing up for us. And maybe we didn't get our miracle as I wanted it to happen. The twins were not saved. There was no sort of grand happy ending. But I found some comfort in being able to find God in the people that continued to show up for us and a lot of the people that still do. You read this certain genre of book that centered around loss where there's this big silver lining and someone had this big profound experience and now you know they've moved from A to B and now you know they're sad but B is so much better but I don't necessarily feel like things are so much better. I have made the best that I can from the situation that I've been dealt and I've been able to form a lot of lovely connections with people and am grateful for my family and my marriage and my living children. And it still really sucks. I would have liked Theodore and Holden to be alive. I would have liked to not have had this constant trauma. I don't feel like there's this tidy way to tie things up. I'll visit the twins grave and feel just like man how is this my life how am I here but I've been trying to lean more into advocacy and speaking up about our experience and the work that I've done with our foundation the Marigold Foundation has been in some ways really healing helping others and trying to make the best of the hand I've been dealt and hoping that that's enough. Today's episode featured Helen. Helen and her husband Zach began the Marigold Foundation, whose mission is to lead the way in providing financial aid to families that are facing a complex medical diagnosis or the loss of an infant or neonate. Links to the Foundation's Instagram and website can be found in the show notes. From Wondery, you're listening to This Is Actually Happening. If you love what we do, please rate and review the show. You can subscribe on Apple Podcasts, Amazon Music, or on the Wondery app to listen ad-free and get access to the entire back catalog. In the episode notes, you'll find some links and offers from our sponsors. By supporting them, you help us bring you our show for free. I'm your host, Whit Misseldein. Today's episode was co-produced by me, Andrew Waits, and Sarah Marinelli, with special thanks to the This Is Actually Happening team, including Ellen Westberg. The opening music features the song Sleep Paralysis by Scott Velasquez. You can join the community on the This Is Actually Happening discussion group on Facebook, or follow us on Instagram at Actually Happening. On the show's website, thisisactuallyhappening.com, you can find out more about the podcast, contact us with any questions, submit your own story, or visit the store, where you can find This Is Actually Happening designs on stickers, t-shirts, wall art, hoodies, and more. That's thisisactuallyhappening.com. And finally, if you'd like to become an ongoing supporter of what we do, go to patreon.com slash happening. 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