The Test

Summary

Podcast Summary: Search Engine – "The Test"

Podcast Information:

• Title: Search Engine
• Host: PJ Vogt
• Episode: The Test
• Release Date: June 13, 2025
• Description: We try to make sense of the world, one question at a time. No question too big, no question too small.

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1. Introduction and Personal Reflection

Host PJ Vogt begins the episode by sharing a deeply personal experience related to handling uncertain and distressing news. He describes a recent medical event that caused him significant anxiety, leading him to obsessively seek information online in an attempt to regain control over his fears.

"At some point in your life, you're going to have to wait for news that is very important to you personally... I had this delusion, which was that information was going to give me control."
[00:XX]

PJ reflects on how his pursuit of information inadvertently exacerbated his anxiety, highlighting the paradox of seeking knowledge to alleviate fear but instead fueling it.

2. Introduction to Amanda Hess

PJ introduces Amanda Hess, a critic at The New York Times, who specializes in Internet and pop culture criticism. He connects Amanda's personal story to a memoir she authored, "Second Life," which delves into her own struggles during pregnancy amidst the digital age.

"I had read this book, it's a memoir called Second Life... I asked the writer if we could talk and she said yes."
[02:XX]

3. Amanda's Early Relationship with the Internet

Amanda recounts her long-standing relationship with the Internet, tracing back to her childhood experiences with AOL chat rooms and seeking advice on platforms like Covergirl.com.

"I remember sending a question when I was like 11 or 12 to like covergirl.com... what you should do if you had acne and freckles at the same time."
[04:56]

She illustrates how her early interactions with online communities fostered a dependence on digital information for personal concerns.

4. Pregnancy Journey and Digital Obsession

In 2019, Amanda and her husband decided to start a family. She describes initially using the period tracker app Flo and how discovering its "pregnancy mode" altered her perception of her pregnancy through a gamified interface.

"The entire interface changed from this, like, girl power diary to an otherworldly orb... I developed surprisingly strong, warm, maternal feelings towards this image on my phone."
[06:18]

Amanda explains how her reliance on digital tools transformed into an obsessive loop of seeking information, which only heightened her anxieties about potential pregnancy complications.

"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."
[08:58]

5. Medical Diagnosis and the Internet's Role

At 29 weeks, during an ultrasound, Amanda received unsettling news about her unborn child possibly having Beckwith-Wiedemann Syndrome (BWS), a rare genetic disorder. This moment intensified her anxiety and dependence on the Internet for answers.

"The doctor came in and he told me that the tongue protrusion was unusual and that my baby might have something called Beckwith Wiedemann syndrome... I knew that a syndrome isn't a good word."
[12:05]

Struggling to comprehend the diagnosis, Amanda felt compelled to seek extensive information online, despite warnings from the medical professionals to avoid doing so.

"He wrote it down for me on a piece of paper because I couldn't remember... don't Google it."
[17:02]

6. Emotional Turmoil and Coping Mechanisms

The waiting period for genetic testing results plunged Amanda into a heightened state of fear and uncertainty. She sought second opinions, which added layers to her anxiety, making her question her own mental resilience.

"I imagined, like, killing myself... if I kill myself, then that is, like, a way out of this scenario."
[28:51]

PJ and Amanda discuss the psychological impact of waiting for life-altering test results, emphasizing the emotional strain and the illusion of control that digital information provides.

7. Resolution and Acceptance

Ultimately, Amanda received conflicting test results, oscillating between hope and despair. An MRI provided some reassurance, but the final confirmation of BWS brought a complex mix of relief and acceptance.

"Having a diagnosis is, like, such a gift. We could actually learn how to prepare for our real child who was coming."
[30:31]

She reflects on the dehumanizing aspect of digital information, contrasting it with the tangible reality of meeting her son, who is now healthy and thriving.

"He's like a really complex person. I never could have genetically constructed, like, a human who is as great as my son."
[44:24]

8. Broader Implications of Genetic Testing

Amanda references sociologist Raina Rapp's work, highlighting the lack of public discourse surrounding the ethical implications of advanced genetic testing. She underscores the personal and societal challenges faced by expectant parents navigating these technologies.

"These medical technologies are being offered to the general public much earlier... our actual public conversation about the impacts of these choices."
[31:58]

9. Final Reflections

In concluding the episode, both PJ and Amanda emphasize the importance of human connection over digital dependency. Amanda shares her journey from seeking control through information to embracing the unpredictability and beauty of her son's existence.

"There's nothing scarier than news about your kids... But he's a human baby. He's cute, you know?"
[42:03]

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Notable Quotes:

• "Information would calm my worries. Instead, it was feeding my worries." — PJ Vogt [02:XX]
• "Pregnancy itself, I think, is very much suited to this online gamification." — Amanda Hess [09:35]
• "You're describing sort of like... religious feelings, like you're being punished." — PJ Vogt [14:15]
• "He was so cute. He's a Baby. He's like a human baby." — Amanda Hess [42:03]

---

Conclusion:

In "The Test," PJ Vogt and Amanda Hess delve into the intricate relationship between digital information and personal anxiety during pregnancy. Through Amanda's memoir, the episode explores how the quest for control via the Internet can both aid and hinder emotional well-being. The narrative invites listeners to reflect on the balance between utilizing technology for information and maintaining human-centered connections in times of uncertainty.

Transcript

[PJ Vogt]

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[Amanda Hess]

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

[PJ Vogt]

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

[Amanda Hess]

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

[PJ Vogt]

So we're gonna get into like your story about pregnancy and about information before we get there. I just want 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?

[Amanda Hess]

I always used it a lot, like from the moment there was an AOL disc in my parents house, you know.

[PJ 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.

[Amanda Hess]

I think I started pre Buddy List.

[PJ 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.

[Amanda Hess]

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

[PJ 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. Flash forward a few 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. 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.

[Amanda Hess]

It was this thing called pregnancy mode, which is, like, an overtly gamified way to talk about, like, 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, like, reproductive control that, like, 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, like, girl power diary to an otherworldly orb floating in the center of the screen with, like, a couple of cells in the middle. And that was the representation of my pregnancy at that moment.

[PJ 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, she said she was developing surprisingly strong, warm, maternal feelings towards this image on her phone, dreamed up by some software company somewhere. Would you show this image to other people? Was it just private to you?

[Amanda Hess]

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, you know, 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, like, showing, you know, as if it were like, an ultrasound image, an 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, and it was, like, pretty awesome. It felt great.

[PJ Vogt]

Those first two trimesters for Amanda had the normal ups and downs. An 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.

[Amanda Hess]

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.

[PJ 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 it's like something. Whatever that behavior is, whatever sort of category of personality or mental health, it goes under. I know it. Yeah, I've been there.

[Amanda Hess]

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.

[PJ 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 get that something might be unusual about your pregnancy?

[Amanda Hess]

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 with 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 girl? Like, do you want to know? 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.

[PJ 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. The technician would come in, take more pictures, leave, talk to the doctor, return.

[Amanda Hess]

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 Wiedemann syndrome, which is a rare genetic disorder that'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.

[PJ Vogt]

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

[Amanda Hess]

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 they're 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.

[PJ Vogt]

Yeah.

[Amanda Hess]

And I knew that I had always known that this was gonna happen because I'd been so obsessively thinking about it. Like, 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.

[PJ Vogt]

Are you. Are you religious?

[Amanda Hess]

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

[PJ 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.

[Amanda Hess]

Yeah. I had this weird feeling early in pregnancy that was new to me, which was I felt superstitious, which. Where A few weeks into my pregnancy, I considered deleting Flo 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.

[PJ 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 oracles or special amulets to 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. 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.

[Amanda Hess]

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 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. Like, I wanted my phone so badly at that moment.

[PJ Vogt]

God, I. 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.

[Amanda Hess]

I know. Exactly, right? Yeah. And then the doctor, after he told me that he suspected this rare condition, he said, don't go. 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.

[PJ Vogt]

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

[Amanda Hess]

So I found a list of potential symptoms that babies can have if they're born with bws um, and that I feel like so ashamed when I talk about this because it was just this, what seemingly like random grab bag of like abnormalities like an enlarged tongue, a like hole in your abdominal wall and then like elevated cancer risk. And so it really freaked me out.

[PJ Vogt]

Sorry, can I ask, like, when you describe that you feel ashamed, what about that reaction now? Do you feel ashamed of.

[Amanda Hess]

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. 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, 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 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.

[PJ Vogt]

After a short break, we'll continue Amanda's story. This episode of Search Engine is brought to you in part by Bombus. Summer's here and we're all chasing something. A break, a goal, a vibe. Let's not let bad socks and blisters ruin that. Bombus makes socks and now slides and seamless essentials that keep up with whatever your summer looks like. Whether you're running a marathon or just a few errands. Maybe you have running goals. You know that song that makes you want to go fast? Bombus running socks are like that. They wick, sweat, help you keep cool and fight blisters. And it's not just running. They make specialized pairs for hiking, tennis, golf, you name it. They offer head to toe comfort. They've got fresh white tees you barely have to break in, waterproof slides for the beach, backyard and everywhere in between. And buttery, soft sweat wicking underwear that feels barely there. I have converted to basically an all Bombus sock wardrobe. They're comfy, they're stylish. I genuinely like them. Head over to bombas.com Engin and use code ENGINE for 20% off your first purchase. That's B-O-M-B-A-S.com engine codee engine at checkout bombus.com engine codeengine@capella University. You can learn at your own pace with our Flexpath learning format. Take one or two courses at a time and complete as many as you can in a 12 week billing session. With Flexpath, you can finish the bachelor's degree you started in 19 months and under $19,000. A different future is closer than you think with Capella University. Learn more at capella.edu fast as 25% of students. Cost varies by pace. Transfer credits and other factors. Fees apply. Welcome back to the show. 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. 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.

[Amanda Hess]

Yeah.

[PJ 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?

[Amanda Hess]

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

[PJ Vogt]

How does that work? They're taking amniotic fluid.

[Amanda Hess]

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, sloughed off cells from your baby's skin that are, like, in that soup.

[PJ Vogt]

Oh, wow.

[Amanda Hess]

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.

[PJ Vogt]

I would love to just talk to you for three hours about LabCorp.

[Amanda Hess]

Yeah. I mean, I thought it was odd that this person who is advising me what test 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 test to get because I was 29 weeks pregnant. Okay.

[PJ Vogt]

Yeah.

[Amanda Hess]

In New York, the limit to get an elective abortion was like, 24 weeks. So I was past that. In New York, which is like, a very liberal state for that. I didn't know what these tests were going to find, whether it was going to be something that was nothing or something manageable or something catastrophic. We 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.

[PJ Vogt]

Oh, wow.

[Amanda Hess]

Yeah.

[PJ 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.

[Amanda Hess]

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.

[PJ 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 were being given sometimes against her will or without us totally understanding what it would mean to understand them. Like, what did you think when he said that?

[Amanda Hess]

I think I had this sense that these decisions were being made without the input of, like, the people who they would affect the most. I'm sure that's not strictly true.

[PJ Vogt]

Yeah.

[Amanda Hess]

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.

[PJ Vogt]

Yeah.

[Amanda Hess]

And it was like, I had to make these incredibly, like, ethically and morally charged decisions 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 experience of my life at that time. I feel like I've since, like, had harder experiences, but I was more ready to face those.

[PJ 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. She went to another doctor to have them 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 would suggest possibly an intellectual disability. 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.

[Amanda Hess]

I felt even more that I was living in some kind of supernatural reality where I was like, okay, you were punished with a genetic condition, and you didn't like it, so 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, whether I would have to. Like, I was like. I imagine, like, killing myself. I was like, if I kill myself, then that is, like, the. A way out of this scenario.

[PJ Vogt]

I'm so sorry.

[Amanda Hess]

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

[PJ Vogt]

You have a hard time accessing empathy for that person?

[Amanda Hess]

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.

[PJ Vogt]

Amanda says that the doctor she'd gone to for this second opinion ordered an MRI to get a better look at her baby's brain. When the test results came back, the news was good.

[Amanda Hess]

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. God, it was, like, the happiest moment of my life. And a few weeks later, we got the test back for Beck with Wiedemann 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 was coming.

[PJ Vogt]

Yeah.

[Amanda Hess]

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.

[PJ Vogt]

Different versions of your life.

[Amanda Hess]

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

[PJ 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, 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.

[Amanda Hess]

There's an amazing book about this called Testing the Woman Testing the the Social Impact of Amniocentesis in America. A sociologist named Raina Rapp wrote the book, and she started thinking about it in 1983 when she had an amniocentesis. It tested positive for down 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. And she asked them why they had 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 me 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. 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.

[PJ Vogt]

Yes. Can I share something with you?

[Amanda Hess]

Yeah.

[PJ 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.

[Amanda Hess]

And then LabCorp, which sounds like it's like a villain's company in like, like.

[PJ Vogt]

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 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 was 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 gonna get an answer now. And if the answer was yes, the time I had left, I was just gonna be thinking about something that I couldn't control. 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 like my capacity to form sentences drifts away. Maybe I'll stop. I don't know. 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 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 well being of the people 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 because I've always been like, yeah, I don't think I'm gonna 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 fates 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 going to be hard to live with.

[Amanda Hess]

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 about, like, I'm gonna send it. Like, it's just a care package, you know?

[PJ Vogt]

Yes.

[Amanda Hess]

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.

[PJ Vogt]

Yes.

[Amanda Hess]

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 the stuff.

[PJ Vogt]

I totally went down my version of this rabbit.

[Amanda Hess]

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

[PJ Vogt]

No, I was in this thing with. Oh, my God, you're. I mean, I don't want to 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.

[Amanda Hess]

I know. That's a word that I learned during my pregnancy, too. 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.

[PJ 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?

[Amanda Hess]

I think I realized that I was obsessed with this idea that the Internet provided this information cocoon, that when I left it, I would have gained my powers in order to deal with this 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 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, right before my son was born, 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. 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 going to be and what he was going to look like. 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? 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. And the whiplash between those moments is just so. It's. I never thought I would have an experience like that in my.

[PJ Vogt]

Amanda says these days her son is doing well. He had tongue reduction surgery at 3 because his tongue could have interfered with his jaw development. And 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 will mean for him emotionally, just 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 couldn't have imagined until one day he showed up. I had one more question for you, and then I'll let you go. Okay. I thought your book was really tremendous. One of the things I noticed was how many times the word information recurs 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. 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.

[Amanda Hess]

Yeah. Or experience. I realize now that there was really, ultimately nothing that I could do to, like, prepare to meet my son that was more crucial than actually just meeting him, you know, and my quest for information, which is really just, like, my need to control the situation. 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. I never could have genetically constructed, like, a human who is as great as my son. Like, 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, my imagination of him is so meager compared to his reality. It would be impossible for me to build him.

[PJ Vogt]

Amanda, thank you.

[Amanda Hess]

Thank you so much.

[PJ Vogt]

Amanda Hess. Her memoir is called Second Having a Child in the Digital Age. We'll have a link to the book in our show. Notes With a Venmo Debit card, you can Venmo more than just your friends. You can use your balance in so many ways. You can Venmo everything. Need gas? You can Venmo this. How about snacks? You can Venmo that. Your favorite band's merch? You can Venmo this or their next show? You can Venmo that. Visit Venmo Me Debit to learn more. You can Venmo this or you can Venmo that.

[Amanda Hess]

You can Venmo this so you could Venmo that.

[PJ Vogt]

The Venmo MasterCard is issued by the Bancorp bank and a pursuant to license. My MasterCard International Incorporated card may be used everywhere MasterCard is accepted.

[Amanda Hess]

Venmo purchase restrictions apply.

[PJ Vogt]

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[Amanda Hess]

This episode is brought to you by Amazon Prime. From streaming to shopping, prime helps you get more out of your passions. So whether you're a fan of true crime or prefer a nail biting novel from time to time, with services like Prime Video, Amazon Music and fast free delivery, prime makes it easy to get more out of whatever you're into or getting into. Visit Amazon.comprime to learn more.

[PJ Vogt]

Search Engine is a presentation of Odyssey. It was created by me, PJ Vogt and Shruti Pinamaneni. Garrett Graham is our Senior producer. This episode was produced by Hazel Mae Bryan and fact checked by Kate Gallagher. Theme Original composition and mixing by Armin Bazarian. Our intern is Oscar Noxon. 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 Search Engine Show. Our Executive producer is Leah Rees Dennis and thanks to the rest of the team at Odyssey, Rob Morandi, Craig Cox, Eric Donnelly, Colin Gaynor, Maura Curran, Josephina Francis, Kurt Courtney and Hilary Schaap. Our agent is Oren Rosenbaum and UTA Follow and listen to Search Engine for free on the Odysee app or wherever you get your podcasts. Thanks for listening. We'll see you soon. Sam.