The Test

A woman gets a disquieting piece of information about her pregnancy, and turns to technology to try to control her future. Second Life - Amanda Hess ( Bookshop https://bookshop.org/p/books/second-life-having-a-child-in-the-digital-age/22134304) Support the show! https://searchengine.supercast.com/ Comment on this episode https://pjvogt.substack.com/p/the-test A playlist of Recommended Search Engine episodes https://open.spotify.com/playlist/5S9VpzSJa8HVGG9H0EmkmJ?si=654118cb2f374003

Speaker names marked ? are inferred from speaking time and the show’s known hosts — they are not voice-verified.

• 0:00PJ Vogt?

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• 2:28PJ Vogt?

  At some point in your life, you're gonna have to wait for news that is very important to you personally. News where, depending on the answer, you can imagine your life splitting in two different directions. The direction you really want and the direction you really don't. I had this happen recently. There was an uncertain, scary medical event, and I did not handle it the way I would have liked.

• 2:55PJ Vogt?

  I got obsessive, I got neurotic. I found myself constantly seeking information, even though there was no real information to find. I was ravenously scrolling obscure subreddits, basically harassing ChatGPT, trying to puzzle through research papers that frankly, I had no business trying to understand. I had this delusion, which was that information was going to give me control. Information would calm my worries. Instead, it was feeding my worries. It was spiraling me out. It was helping me lose control of the one thing I possibly could still have controlled: my own mind. The episode in my life resolved. Things turned out fine.

• 3:38PJ Vogt?

  And then, just a week later, I read this book. It was a memoir called Second Life. And it was about someone who had an experience that, despite being pretty different from my own, also contained some aspects that I recognized. The writer had been pregnant, the time in people's lives marked by lots of worry and uncertainty. And then she'd gotten a very scary piece of news about her unborn kid. There's nothing scarier than news about your kids. Anything about yourself pales in comparison. And she'd had to decide what information she wanted, what information she didn't, and how to grapple with something that was both very frightening, but also not entirely certain. It was just a possibility. I asked the writer if we could talk,

• 4:23PJ Vogt?

  and she said yes.

• 4:26PJ Vogt?

  Can you say your name and what you do?

• 4:28Speaker 01

  Sure. My name is Amanda Hess and I am a critic at The New York Times.

• 4:33PJ Vogt?

  And what type of criticism do you say that you do?

• 4:36Speaker 01

  Uh, I generally write internet criticism and pop culture criticism. I'm analyzing the internet as if it were any other piece of media.

• 4:46PJ Vogt?

  So, we're gonna get into like your story about pregnancy and about information. Before we get there, I just wanted to sort of draw a picture of you as a person in your pre-mom existence. When you talk about being a critic of the internet as if it's another sort of text, like, what has your relationship to the internet been as a person?

• 5:05Speaker 01

  Um, I always used it a lot. Like, from the moment there was an AOL disk in my parents' house, you know?

• 5:16PJ Vogt?

  Which AOL did you sign up for? There was like 2.0, 3.0 had the Buddy List. 2.5 was the last one without it. I just remember, I remember the great, AOL was very important to me.

• 5:28Speaker 01

  I think I started pre-Buddy List.

• 5:30PJ Vogt?

  Yeah, so that would, that would put you, god, I sound like I'm like trying to like prove that I listened to the band when they were sufficiently obscure. But I will say that would put you at 2.0 or 2.5, probably.

• 5:40Speaker 01

  Okay, yeah. I was really interested in the chat rooms. This is before there were like makeup tutorials everywhere. And I remember sending a question when I was like 11 or 12 to like CoverGirl.com. You could ask them questions about beauty. And I asked them like what you should do if you had acne and freckles at the same time.

• 6:05Speaker 01

  Which I'm sure like I would find a million videos about now that honestly like maybe just would have improved my life somewhat.

• 6:16PJ Vogt?

  At 12, Amanda first discovered the pattern that most of us fall into with the internet. We learn that it can be an overconfident, unreliable oracle, one who is often trying to sell us something. But we go to it anyway, because it's often right. And if not, it's at least always there.

• 6:35PJ Vogt?

  Flash forward a couple decades. Amanda is now an adult in her mid-30s. We're in the era of iPhones and apps for everything. And there's this moment in 2019 where Amanda and her husband decide to have a baby.

• 6:50PJ Vogt?

  Amanda had been using a period tracker app called FLO, F-L-O. And after she got pregnant, when she returned to the app, she discovered the app had this whole other mode she'd never noticed. It was like finding a secret door.

• 7:04Speaker 01

  It was this thing called Pregnancy Mode, which is like an overtly gamified way to talk about conceiving a child. So I flipped on Pregnancy Mode and it was like, are you sure you want to activate Pregnancy Mode? As if I had all of this reproductive control right in my hand. And I was like, yes, I'm sure I want to activate it. And then the entire interface changed from this girl power diary to an otherworldly orb floating in the center of the screen with a couple of cells in the middle. And that was the representation of my pregnancy at that moment.

• 7:50PJ Vogt?

  Amanda says the image on the app was janky and weird at first, just a clump of cells. But then the cells multiplied. They turned into a shrimp-like thing. Then arms and legs appeared. Gradually, the image became something that looked human. If this is a story about information and the strange ways information can make you feel, at this point, she said she was developing surprisingly strong, warm maternal feelings towards this image on her phone, dreamed up by some software company somewhere.

• 8:20PJ Vogt?

  Would you show this image to other people? Was it just private to you?

• 8:25Speaker 01

  I showed it to my husband once or twice, but I felt pretty stupid about it. Like, I knew, once I got out of my intimate relationship with the app and exposed it to the light of real human relationships, I was like, this looks stupid. I feel crazy for showing, as if it were like an ultrasound image of this to someone. But I did show it to my husband. And at one point, you could swipe forward through the weeks. And we swiped forward to like 40 weeks, just like laying in bed together and watching it.

• 9:04Speaker 01

  And it was like, pretty awesome. It felt great.

• 9:12PJ Vogt?

  Those first two trimesters for Amanda had the normal ups and downs and expectant mother faces. She was preparing for something very ancient, the arrival of her child, using something very modern. Amanda would scroll through subreddits for moms where people offered advice or judgment, or often both. As she read, she found herself imagining all sorts of grim nightmare outcomes for her pregnancy. She'd picture these possible tragedies and wonder, had she already made the mistake that would set her on a path towards one of them?

• 9:46Speaker 01

  Anything that I thought I had maybe done imperfectly during pregnancy, like, take a bath that was too hot, just like forgetting that that was like something that could harm a fetus. I don't know if like I have obsessive compulsive disorder, but I had this very obsessive relationship during pregnancy with the internet of needing to like, close the loop of the fear by doing a lot of searching, even when there's no real answer to any of those questions.

• 10:23PJ Vogt?

  Right, but you feel like if you have more information, if you can basically turn your brain to a Final Destination movie, somehow that's like an inoculation, or at least you'll understand. And if you understand every single bad thing that could happen, then it's like it already happened and you're kind of okay with it. Or like something, whatever that behavior is, whatever sort of category of personality or mental health it goes under, I know it.

• 10:44Speaker 01

  Yeah, yeah.

• 10:45PJ Vogt?

  I've been there.

• 10:46Speaker 01

  You know, pregnancy is rough and a lot of things can happen in a pregnancy. But all of these apps are like, they're like disciplinary programs for creating optimal humans. Pregnancy itself, I think, is very much suited to this online gamification where it's like, level one, you feel very sick. Level two, like the baby's getting bigger. Level three, like ends in the birth. And I was like interested in where I was and what fears I could like, put aside.

• 11:18PJ Vogt?

  So for Amanda, she and her internet were now in this loop they maintained together. She'd check in out of curiosity, out of anxiety. She'd get information, which often fed her anxiety. Her anxiety would make her want more information. For two trimesters, that's how the loop ran. It was in the third trimester, level three, that things changed. What's the first piece of information you got that something might be unusual about your pregnancy?

• 11:45Speaker 01

  I was 29 weeks pregnant and I went in for an ultrasound that was checking on the health of my placenta. Because I had a little marker in my blood and because I was 35, it triggers this protocol to check and make sure that you're not developing preeclampsia, which is a condition with the placenta. And I remember lying there, my mask on, because this is 2020, and the technician was talking with me. And they have like their stock, small talk that they say, like, have you picked a name? Do you know if it's a boy or a girl? Like, do you want to know?

• 12:27Speaker 01

  And then she like stopped small talking with me and I realized that the exam was lasting a really long time. And she was like examining things that I knew were not the placenta. And she told me that the baby's tongue was sticking out. And I was like, that's so cute. You know, like, obviously, that's so adorable. And I realized later that like, if the tongue is sticking out persistently on an ultrasound, that is unusual.

• 12:53PJ Vogt?

  The technician left the room to communicate to the doctor what she'd seen. As Amanda sat alone in one room, in the other, the technician was receiving more instructions remotely from the doctor. There was a new loop where the technician would come in, take more pictures, leave, talk to the doctor, return.

• 13:12Speaker 01

  And eventually, when she was done, the doctor came in and he told me that the tongue protrusion was unusual and that my baby might have something called Beckwith-Wiedeman syndrome, which is a rare genetic disorder. It's an overgrowth disorder. And at the time, like, I had never heard that combination of words before, but I knew the word syndrome and I was like, that is not a good, like, a syndrome isn't a good word.

• 13:40PJ Vogt?

  And when you say an overgrowth disorder, what does that mean?

• 13:44Speaker 01

  It causes certain parts of the body to grow faster than others. So in some kids... They're born with a really large tongue. Others have like enlarged intestinal organs or their entire body is larger. Or half of their body is like growing faster than the others. So they have like a leg length discrepancy. And certain pediatric cancers can occur. So like certain tumors can grow in young children. It was a jarring thing to hear. I didn't know anything about the syndrome. All I knew was that he could see something in my baby that indicated that something was wrong.

• 14:23PJ Vogt?

  Yeah.

• 14:24Speaker 01

  And I knew that I had always known that this was gonna happen. Because I'd been so obsessively thinking about it. Like I, I had been thinking about it for such a long time, like something happening, something happening. And just like spending so much time alleviating my fears about it. And it almost felt like I was being punished for thinking like I could win pregnancy. That I could do it okay. And I felt like I was being smited or something for having this cavalier approach.

• 15:04PJ Vogt?

  Are you, are you religious?

• 15:06Speaker 01

  No, like I've, I've never, I don't, I've never believed in anything except for like Santa Claus.

• 15:15PJ Vogt?

  But it's like you're describing sort of like, and I just, I'm just saying this because I relate. You're describing in a moment of distress, very religious feelings, like you're being punished, you're being smited. Had you had the correct thoughts in the right order, there's some part of your brain that's insisting you could have behaved in such a way that God, the universe, something would have acted differently.

• 15:37Speaker 01

  Yeah.

• 15:41Speaker 01

  I had this weird feeling early in pregnancy that was new to me, which was I felt superstitious about the pregnancy, where a few weeks into my pregnancy, I considered deleting flow. Because I found it kind of obnoxious, the amount of updates it was giving me. And so I thought about deleting it and downloading a different pregnancy tracker. But I felt superstitious about it, like I felt superstitious about deleting my baby.

• 16:16PJ Vogt?

  The fascinating thing about a moment of crisis is that sometimes beliefs you hold that you're not even aware of are suddenly revealed to you. Amanda learned that she'd developed a relationship with this app that was superstitious. She's not a religious person, but she'd imbued it with some kind of spiritual power. I bet more people have done this than have allowed themselves to realize it. There's some human desire to worship, to believe, to look for special amulets that give us power over the things we can't control. And in a world where fewer and fewer people are religious, or think of themselves as religious, maybe more of us, without realizing it, have magical thoughts about stranger things, like our phones, like information.

• 17:00PJ Vogt?

  Ancient Greeks went to oracles, we go to Reddit. We look something up, hoping we'll get a glimpse of our fate, so that maybe we can avoid it.

• 17:11Speaker 01

  I had this feeling, as the technician was working, that if I had my phone with me, I could Google the things that she was looking at. I could Google tongue stuck out seven months ultrasound, and I could figure out what was going on. And either like, that would fix it, or at least I would be in control of the situation. There wouldn't be some expert looking into my body who knew way more about it, what was going on in there than I did. And like, I wanted my phone so badly at that moment.

• 17:43PJ Vogt?

  God, I mean, I don't understand the source of that delusion, but I relate to it so deeply. You're like, give me my magical stone that gives me answers.

• 17:54Speaker 01

  I know, exactly. Right? Yeah. And then the doctor, after he told me that he suspected this rare condition, he said, don't Google it. He wrote it down for me on a piece of paper, because I couldn't remember, like, the words that he had said. And he said, don't Google it. And like, I did immediately, obviously.

• 18:12PJ Vogt?

  And so then you just find a bunch of nightmare fuel, I'm assuming?

• 18:17Speaker 01

  So I found a list of potential symptoms that babies can have if they're born with BWS. And that I feel like so ashamed when I talk about this.

• 18:34Speaker 01

  Because it was just this seemingly like random grab bag of like abnormalities. And so it really freaked me out.

• 18:45PJ Vogt?

  Sorry, can I ask, like, when you described that you feel ashamed, what about that reaction now do you feel ashamed of?

• 18:53Speaker 01

  Um, because my son, when he was born, had some of those markers. And he's like, you know, he's like the most beautiful person in the world to me. Um, and also, I hate any inkling of thinking like, that anyone is judging him or has like stigmatized him for looking different. And knowing that I did that before anyone else, like his, his mother, is, um,

• 19:32Speaker 01

  you know, it's one of those experiences where at the time I felt like I was Googling to get control and control would help me be good mother. And now I know that like, uh, good mother. I don't even like that term. Like, in order to be like a good parent to him, I had to meet him and not try to manage who he was going to be or what people would think about him, what I would think about him.

• 20:14PJ Vogt?

  After a short break, we'll continue Amanda's story.

• 20:44PJ Vogt?

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• 23:04PJ Vogt?

  Welcome back to the show.

• 23:09PJ Vogt?

  When we left the story, Amanda had met with a doctor who had told her that her son might have a genetic disorder, but that it would take testing to know for sure.

• 23:21PJ Vogt?

  You leave the office, they hand you the piece of paper and say, "Don't Google it," which that is like a Greek myth. Like, I think every single human being who's ever been alive Googles it.

• 23:34Speaker 01

  Yeah.

• 23:37PJ Vogt?

  So you Google it and you have like a horrible time. But so what, what happens next medically? Like, they're like, you're gonna do genetic testing? Like, what's the next step?

• 23:45Speaker 01

  Yeah, so they scheduled me for an amniocentesis the next day. I had not had one of those earlier in pregnancy.

• 23:52PJ Vogt?

  How does that work? They, they're taking amniotic fluid?

• 23:56Speaker 01

  Yeah, they use a really, really big, like, comically large needle and they stick it in your enormous stomach. And they extract a bunch of like, yellowish fluid out of your body. And there are like, slopped off cells from your baby's skin that are like, in that soup.

• 24:19PJ Vogt?

  Oh, wow.

• 24:19Speaker 01

  I think they're like peeing and pooping, essentially like in some way in there and then drinking it. I don't actually know what happens there, but their cells are in there somehow. And then they can go and like isolate the cells and grow them so that they can get more of them, so that they can test for more things. So I eventually, this was like 12 hours later, they put me in touch with a genetic counselor who worked for LabCorp, which I didn't like.

• 24:50PJ Vogt?

  I would love to. Just talked to you for three hours about LabCorp.

• 24:53Speaker 01

  Yeah, I mean, I thought it was odd that this person who is advising me what tests to get worked for the testing company that made money off of giving people tests. I was like, is she telling me to get way more tests than I need to? And it was, this was really tough. It was tough to decide which tests to get because I was 29 weeks pregnant. And so I wanted the information as soon as possible. But the more tests that you choose, the longer you have to wait because they have to grow more cells to test for more things.

• 25:27PJ Vogt?

  Oh, wow.

• 25:28Speaker 01

  Yeah.

• 25:30PJ Vogt?

  Amanda says the doctor suggested another kind of genetic test called whole exome sequencing. This test would be able to detect all sorts of different possible genetic mutations or disorders. Amanda decided against whole exome sequencing. She didn't want to know about outcomes she wouldn't be able to prevent or about scary sounding probabilities that might worry her but never actually show up for her child. She asked instead for more limited testing from the doctor.

• 26:00Speaker 01

  And he was disappointed. He was disappointed that we didn't do it. And he said, this is going to be the standard for genetic testing soon. That people are going to do this. And I was like, okay, I don't care. I don't want it.

• 26:16PJ Vogt?

  How do you feel like, not to like, I don't mean to leave your story to ask you this broader question, but like, when he said this is going to be the standard of genetic testing, like, how did you feel about that? As a person who, besides being a person going through this experience, is a person who thinks about digital information, the internet, these weird prophecies we're being given sometimes against our will or without us totally understanding what it would mean to understand them. Like, what did you think when he said that?

• 26:44Speaker 01

  Um, I think I had this sense that these decisions were being made

• 26:52Speaker 01

  without the input of like,

• 26:57Speaker 01

  The people who they would affect the most. I'm sure that's not strictly true.

• 27:02PJ Vogt?

  Yeah.

• 27:03Speaker 01

  But I was so naive to like, what genetic testing can and can't test for. Like, what it means when something is flagged as high risk or positive or negative.

• 27:19PJ Vogt?

  Yeah.

• 27:19Speaker 01

  Um, and it was like I had to make these incredibly, like, ethically and morally charged decisions uh, through this technology that I did not understand, that I had no control over. And it would only affect, you know, my child's future. It was like the worst

• 27:41Speaker 01

  experience of my life at that time.

• 27:46Speaker 01

  I feel like I've since like had harder experiences, but I was more ready to face those.

• 27:55PJ Vogt?

  For Amanda, what was harder than the decision about which tests to take was what happened afterwards. Which is that after the amniocentesis cells were sent off for testing to LabCorp, Amanda then would end up waiting four weeks for the test results. Four weeks in which she just had to find a way to live with a question that felt beyond life or death. One thing she did in those weeks of waiting was she sought out a second opinion.

• 28:22PJ Vogt?

  She went to another doctor to have her look at the ultrasound. But instead of clearing her, the doctor detected an additional possible problem. On the scan, her baby's brain looked smoother than it should, which could suggest possibly that her baby's brain was failing to properly develop. As Amanda's worry and her superstition deepened, it was starting to seem to her that her thoughts and fears were actually affecting what was happening.

• 28:49Speaker 01

  I felt even more that I was living in some kind of supernatural reality, where I was like, okay.

• 28:57Speaker 01

  You were punished with a genetic condition and you didn't like it. So like, we're gonna give you something worse. Like, we're gonna get you something like this is much more like catastrophic than that. Because someone saw something or thought they saw something on an ultrasound of a body that's inside my body. I spent that week like researching abortion providers who provide abortions in the third trimester. How I could fly there, get it done and recover there in a place that is not New York. And like during a pandemic. Whether it would even be possible to do this?

• 29:39Speaker 01

  Whether I would have to like, I, I, I was like, I imagined like killing myself. I was like, if I kill myself, then that is like the, a way out of this scenario.

• 29:53PJ Vogt?

  I'm so sorry.

• 29:56Speaker 01

  It like, I, I feel like I should have like more empathy for the person than I was at that time.

• 30:03PJ Vogt?

  You have a hard time accessing empathy for that person?

• 30:08Speaker 01

  No, but I think that she was particularly freaked out because like she didn't even think about the possibility of like her child like having any disability at all. Like it was, I was like, starting from like zero, you know, in terms of like even considering that could happen.

• 30:32PJ Vogt?

  Amanda identifies the week she spent waiting to get an MRI as the darkest part of all of this. The only time where she found herself thinking about suicide or considering an abortion. When she finally was able to get an MRI and the doctor got a better look at her baby's brain. The doctor told her that the news was actually good.

• 30:51Speaker 01

  He said that the brain looked perfectly normal and that he couldn't see any structural differences in it at all. And an MRI is just better at looking at a brain than an ultrasound is.

• 31:09PJ Vogt?

  God.

• 31:11Speaker 01

  It was like the happiest moment of my life. Um, and a few weeks later, we got the test back for Beck with Weideman syndrome, and it was positive. And I was so happy then, too. Because like at the beginning of this four weeks, I couldn't have imagined this. But at the end, having a diagnosis is like such a gift. We could actually learn how to prepare for like our real child who is coming.

• 31:41PJ Vogt?

  Yeah.

• 31:42Speaker 01

  And so I went from feeling like I had been like cursed and like pushed down these levels of curse to redeemed in some way, even though I had done nothing. I did nothing. Nothing about my child changed. Nothing about me changed. But this entire journey was like as if I were like moving between, I don't know, realms.

• 32:03PJ Vogt?

  Uh. Different versions of your life.

• 32:06Speaker 01

  Yeah, I don't know. But nothing changed.

• 32:13PJ Vogt?

  This is one of the stranger truths for anybody who, for any reason, waits for the results of a genetic test. The fantasies you can have about different possible outcomes feel so real and are so profoundly emotionally absorbing that it's like your mind splits into different realities. The positive test result, the negative test result, as you read post after post online from people who were in your shoes, trying to find yourself, trying to guess your own future. It's an intense, peculiar kind of reality to live in. These experiences, which many more people are having these days, are relatively new. We've had some rudimentary genetic testing since the 1950s.

• 32:55PJ Vogt?

  But the idea that it's something that many expectant parents routinely do, that's something that changed in the past decade as our ability to test for and sometimes treat genetic disorders has rapidly expanded.

• 33:09Speaker 01

  There's an amazing book about this called Testing the Woman, Testing the Fetus: The Social Impact of Amniocentesis in America. A sociologist named Reyna Rapp wrote the book, and she started thinking about it in 1983 when she had an amniocentesis. It tested positive for Down's Syndrome. She had an abortion, and she started thinking about the effects of this process and this choice on herself, on her peers, and just on pregnancy in general. And she spent 15 years studying people who undergo amniocentesis with like a variety of results.

• 33:53Speaker 01

  And she asked them why they decided to take it, or why they had decided not to take it, their reactions to the results, and then how they made a decision about what to do. And one of the main themes of her book is that these medical technologies are being offered to the general public much earlier and at a much more advanced rate than like our actual public conversation about like the impacts of these choices, that these choices will even be offered to you, that it will be something that you'll like need to decide. And the thing that struck me when a similar sort of thing happened in my pregnancy was like, I'm being asked to make this private decision.

• 34:37Speaker 01

  It's going to affect one potential person, like my son. But it also has these like really wide-ranging social effects, and I have never had a conversation with any person about this experience.

• 34:55PJ Vogt?

  Yes. Can I share something with you?

• 34:59Speaker 01

  Yeah.

• 35:00PJ Vogt?

  So I was trying, when I first started trying to read your book, I happened to be in this very weird... Episode in my life where a family member had reached out a bunch of times and suggested, I get tested for a genetic mutation. And I'd kind of ignored it. And then they'd called me and like, really been like, hey, this could be pretty bad and could show up in your life pretty soon if it expresses itself. So you have to go. And I don't know, every other time it had been like a, like a marginal hypothetical in my mind, and then it had, it had really landed as like that feeling of like a maybe. And so I'd gone and got tested kind of impulsively. And then LabCorp.

• 35:42Speaker 01

  Which sounds like it's like a villain's company.

• 35:45PJ Vogt?

  And like, like one of the like Robocop movies or like a Terminator movie. And like, I walked into like a one medical one day before work and you know, they'd sent the stuff to LabCorp like half an hour. Like it was that convenient in a way that now I'm not sure it should have been. And this was just test results for me, like not for my baby. So this is all a million times easier, but it was just like four weeks where my life tunneled. The thing that really bothered me wasn't that this thing that could happen could shorten my life or shorten the quality of my life. It was to think that I was going to get an answer now. And if the answer was yes, the time I had left, I was just going to be thinking about something that I couldn't control.

• 36:27PJ Vogt?

  I had this conversation with my therapist where he was like, well, you know, you know how to live. And if you have 15 good years, you'll have 15 really good years. And in my head, I was like, that's a really nice thing for you to say. That's just not true. Like I will spend 14 of those years Googling symptoms on Reddit. And then like as my capacity to form sentences drifts away, maybe I'll stop. I don't know. It's, I'm, I have not earned an opinion on how widespread genetic testing should be. But I've earned an experience where I thought that was a really awful way to spend four weeks of my life that I, I know my life is finite. I know that I won't get those four weeks back. All the things that really matter and are important, like the wellbeing of the people

• 37:09PJ Vogt?

  in my family and my job and my friends all went to the background and I lived in this weird prophecy. And it was funny, it was the first time that the stupid Oedipus story ever made sense to me. So it was been like, yeah, I don't think I'm going to kill my dad or have sex with my mom. But to me, I was just like, oh, you should be wary about the oracles because like, How useful is it to know a fate you can't change, really? Like, what does it do to make your life feel more meaningful? And if that fate's a probability? Like, I don't know how to sit with a maybe. I really don't. And maybe other people are wiser than me. But like, I wish someone had had a conversation with me to be like, you really need to think about this before you ask this question, because it's really gonna be hard to live with.

• 37:48Speaker 01

  Yeah. I remember after I had the amniocentesis, the receptionist gave me a package that had my baby cells in it and told me to go to FedEx. And I was like, I yelled at her. I was like, what do you mean? Nobody had ever asked. And my husband was like, you can't yell at the receptionist. And I was like, sorry. But what are you talking about? Like, I'm gonna send it like it's just a care package, you know?

• 38:14PJ Vogt?

  Yes.

• 38:14Speaker 01

  Like, it's just some physical object? It felt so wrong for it to just be such a just a normal object, just a quotidian, like anything else in the mail. And I was like, it's not a physical thing. It's a philosophical thing that I'm sending. Or like, it's a metaphysical thing that I'm sending, an ethical question that I'm sending.

• 38:34PJ Vogt?

  Yes.

• 38:35Speaker 01

  Um, not a piece of real matter. I don't know. Uh, and then after that happened, I got into this Googling wormhole about what happens to the samples after? Like, they go into this truck. There's someone who drives the truck, whose job is just to drive the sample truck. And you can like, watch a video online of all the robots analyzing this stuff.

• 39:00PJ Vogt?

  I totally went down my version of this rabbit hole.

• 39:04Speaker 01

  Yeah. I was like, I need to know the chain of custody for some reason. That's gonna happen.

• 39:11PJ Vogt?

  No, I was in this thing with, oh my God. You're, I mean, I don't wanna say that any part of your experience marks you as lucky. That's a really hard experience. But I will say, you were there before ChatGPT. And the conversations you can force ChatGPT to have with you about methylation and an assay.

• 39:29Speaker 01

  That's a word that I learned during my pregnancy, too. I was like, why? I was like, why should I know this word? Like, it's wrong for me as an English major to know what this word means. But I do now.

• 39:40PJ Vogt?

  Yeah. What's strange about the way I was behaving, the way, to some degree, Amanda Hess was behaving, is that we actually already had access to very good information, the information we could get from actual doctors. To seek out second, third, infinite opinions online from idiots, from chatbots, it means you're closing your ears to a doctor and opening it to some people who, frankly, often have no idea what they're talking about. We know this when we're reading about things we already understand. We forget it when we're confused and desperate. What is that, that compulsion to search? What makes us do it? Where do we think we're going, exactly?

• 40:24Speaker 01

  I think I realized that I was obsessed with this idea that like, the internet provided this information cocoon, that when I left it, I would have gained my powers in order to deal with the situation. Whereas any information that was outside of that, like that a doctor knew, I was so afraid of. The idea of not being the person in control, even though, of course, I wasn't in control. But I also, you were saying like, is it ever good to know this stuff? And for me, ultimately, even though it was like a really terrible experience, I'm so lucky that I got this diagnosis before my son was born,

• 41:08Speaker 01

  because it meant that there could be doctors waiting for him at the hospital where he gave birth, who were ready with a protocol to treat him. I think I have to believe that it was so, so helpful, so that it's all worth it in some way. I needed something to resolve this like out-of-body experience that I had. But also...

• 41:37Speaker 01

  Uh, right before my son was born,

• 41:41Speaker 01

  I was in labor for a long time and I was pushing and he didn't come out. And eventually my doctor suggested a C-section and I was like, sure.

• 41:51Speaker 01

  And then I started crying and I think the people around me, very used to women who like get really sad about having to have a C-section, who don't or who are afraid of it, don't want to have it. And I let them think that's what was happening. But what was really happening was like, I was afraid to meet my baby. I was afraid about who he was gonna be and what he was gonna look like.

• 42:16Speaker 01

  And then immediately, when they like cut him out, they bundled him up or whatever, like passed him to my husband. And he said, he's so cute. He's so cute. And he like brought him to me and he was so cute, like he's a baby. He's like a human baby. He's cute, you know? Um, and I think it was only at that moment that I realized like how dehumanized all of the information had been. It was just taken out of this context of like a real life. And suddenly like, he was alive. He was like there and he was a person who has a thing. But he was my son and he was beautiful.

• 43:01Speaker 01

  And the whiplash between those moments is just so...

• 43:06Speaker 01

  It's, I, I never thought I would have an experience like that in my life.

• 43:11PJ Vogt?

  Amanda says these days, her son is doing well. He had tongue reduction surgery at three because his tongue could have interfered with his jaw development. He's four now. He still gets tested a lot because Beckwith-Weidman syndrome means he has an elevated risk for some cancers. But those risks decrease over time and so far, he's okay. Amanda also worries about what this all might mean for him emotionally to have spent so much time in the medical system at such a young age. But mainly, she just really loves her son. This person she could never imagined until one day, he showed up.

• 43:46PJ Vogt?

  I had one more question for you and then I'll let you go.

• 43:48Speaker 01

  Okay.

• 43:49PJ Vogt?

  I thought your book is really tremendous. One of the things I noticed was how many times the word information occurs. Where you talk- About like, I was seeking information, I was trying to get more information, there's too much information. It's not a chorus, it's like a beat in the book, like a musical beat. And then towards the end of the book, like, the word information starts to disappear a little bit, or at least it seemed to, and you started to talk about knowledge? And I wondered if that's something you consciously think about, like, about acquiring information versus acquiring knowledge, and if those things feel different.

• 44:19Speaker 01

  Yeah, or experience. I realize now that, like, there was really, ultimately, um, nothing that I could do to, like, prepare to meet my son that was more crucial than, like, actually just meeting him, you know? And my quest for information, which is really just like my need to control the situation.

• 44:47Speaker 01

  Once your kid is born, and, like, especially once they become a toddler, I can't control my child in any way. Like, I wish I could control him more, but that fantasy is so gone, like, he's just so, so real. He's like a really complex person.

• 45:10Speaker 01

  I never could have genetically constructed, like, a human who is as great as my son. Like, if, if I had, like, used this, like, advanced embryo selection technology to be like, I want him to have really good balance, or whatever, like, I, my imagination of him is so meager compared to his reality. It would be impossible for me to build him.

• 45:37PJ Vogt?

  Amanda, thank you.

• 45:38Speaker 01

  Thank you so much.

• 45:47PJ Vogt?

  Amanda Haas. Her memoir is called Second Life: Having a Child in the Digital Age. I highly recommend it, and if you want to pick up a copy, there will be a link in our show notes.

• 47:13PJ Vogt?

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• 47:55PJ Vogt?

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• 48:16PJ Vogt?

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• 49:00PJ Vogt?

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• 49:23PJ Vogt?

  This episode of Search Engine is brought to you in part by Vanguard. To all the financial advisors listening, let's talk bonds for a minute. Capturing value in fixed income is not easy. Bond markets are massive, murky, and let's be real, lots of firms throw a couple flashy funds your way and call it a day. But not Vanguard. Vanguard bonds are institutional quality, meaning top-grade products built as a true commitment to your clients. Their impressive lineup features over 80 bond funds, actively driven by a global team of 200 sector specialists, analysts, and traders. While other firms push star portfolio managers, Vanguard relies on collective brain power, so every client benefits from shared expertise. Instead of chasing high-stakes gambles that lead to volatile rides, Vanguard delivers steady, reliable, and consistent performance designed for the long haul.

• 50:08PJ Vogt?

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• 50:32PJ Vogt?

  Search Engine is a presentation of Odyssey. It was created by me, PJ Vogt, and Trudy Pinamaneni. Garrett Graham is our senior producer. This episode was produced by Hazel May Bryan and fact-checked by Kate Gallagher. Theme, original composition, and mixing by Armin Bazarian. Our intern is Oscar Knoxen. If you'd like to support our show and get ad-free episodes, zero reruns, and some upcoming audio, please consider signing up for incognito mode. You can learn more at searchengine.show. Our executive producer is Leah Reese-Dennis, and thanks to the rest of the team at Odyssey: Rob Morandi, Craig Cox, Eric Donnelly, Colin Gaynor, Maura Curran, Josefina Francis, Kirk Courtney, and Hillary Shap.

• 51:16PJ Vogt?

  Our agent is Orin Rosenbaum at UTA. Follow and listen to Search Engine for free on the Odyssey app or wherever you get your podcasts. Thanks for listening. We'll see you soon.