The Test

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2:09At some point in your life, you're going to 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.

2:36I 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.

3:18Things turned out fine. 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. son. 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.

4:00It was just a possibility. I asked the writer if we could talk, and she said yes. Can you say your name and what you do? Sure. My name is Amanda Hess, and I am a critic at the New York Times. And what type of criticism do you say that you do? I generally write internet criticism and pop culture criticism. I'm analyzing the internet as if it were any other piece of media. So we're going to get into 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, what has your relationship to the internet been as a person?

4:49I always used it a lot. Like from the moment there was an AOL disc in my parents' house, you know? 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. I think I started pre-buddy list. Yeah, so that would put you, God, I sound like I'm trying to 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. Okay, yeah. I was really interested in the chat rooms. This is before there were like makeup tutorials everywhere.

5:29And 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.

5:58At 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 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.

6:32Amanda had been using a period tracker app called Flow, 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. 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.

7:27And that was the representation of my pregnancy at that moment. 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. Would you show this image to other people?

8:04Was it just private to you? 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 uh for like showing you know 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. And it was like pretty awesome. It felt great. Those first two trimesters for Amanda had the normal ups and downs and expectant mother faces.

9:00She 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? 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.

9:44I 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. 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.

10:26Yeah, yeah. I've been there. You know, pregnancy is rough and a lot of things can happen in a pregnancy. But all of these apps are 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, the baby's getting bigger. Level three ends in the birth. And I was interested in where I was and what fears I could put aside. 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.

11:12Her 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? 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?

12:06Do you know if it's a boy or a 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. 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.

12:47There was a new loop where the technician would come in, take more pictures, leave, talk to the doctor, return. 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. 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. And when you say an overgrowth disorder, what does that mean? It causes certain parts of the body to grow faster than others.

13:30So in some kids, they're born with a really large tongue. Others have enlarged intestinal organs, or their entire body is larger, or half of their body is growing faster than the others, so they have a leg length discrepancy. And certain pediatric cancers can occur, so 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. And I knew that I had always known that this was going to 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.

14:23And 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. Are you religious? No. Like, I've never believed in anything except for, like, Santa Claus. 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.

15:19Yeah.

15:23I 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.

15:58The 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 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.

16:39Like 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.

16:52I 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. sound 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. I like, I wanted my phone so badly at that moment. God, 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.

17:36I 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 the words that he had said. And he said, don't Google it. And I did immediately, obviously. And so then you just find a bunch of nightmare fuel, I'm assuming? So I found a list of potential symptoms that babies can have if they're born with BWS. And that I feel so ashamed when I talk about this. Because it was just this seemingly random grab bag of abnormalities. And so it really freaked me out.

18:27Sorry, can I ask, like, when you describe that you feel ashamed, what about that reaction now do you feel ashamed of? Because my son, when he was born, had some of those markers.

18:46And 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 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 a 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

19:55After a short break, we'll continue Amanda's story.

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22:44Welcome back to the show.

22:48When 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.

23:01you 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 google said yeah so you google it and you have like a horrible time but so what what happens next medically Like, they're like, you're going to do genetic testing? Like, what's the next step? Yeah, so they scheduled me for an amniocentesis the next day. I had not had one of those earlier in pregnancy. How does that work? They're taking amniotic fluid? Yeah, they use a really, really big, like, comically large needle. And they stick it in your enormous stomach.

23:43And 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. Oh, wow. 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 um I didn't like I would love to just talk to you for three hours about LabCorp 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?

24:45And 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. Oh, wow. Yeah. 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.

25:36She asked instead for more limited testing from the doctor. 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. 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 our will or without us totally understanding what it would mean to understand them.