#324 – Looking for Answers: Parenting, Uncertainty, and the Digital Age

Hello Friends 👋

In this episode of Neo News, journalist and New York Times critic-at-large Amanda Hess joins host Dr. Eli Cahan to revisit the story behind her viral essay, “My Son Has a Rare Syndrome, So I Turned to the Internet.” Amanda shares the disorienting experience of receiving her son’s diagnosis of Beckwith-Wiedemann syndrome during a routine third-trimester ultrasound and the digital spiral that followed.

As a new parent navigating the NICU and early medical complexities, she reflects on the paradox of modern care: how high-tech diagnostics coexist with emotional disconnection—and how often the only available companion is the search bar. The conversation explores the reality of caregiving with limited context, the emotional fallout of confronting diagnosis alone, and the unpredictable role of the internet and social media in shaping parental perception.

Drawing from her upcoming book Second Life: Having a Child in the Digital Age, Amanda brings a clear-eyed perspective on the information gaps, algorithmic noise, and the human need for clarity when the stakes are impossibly high.

Listen in for a raw and thoughtful look at what happens between the scan, the screen, and the real child in your arms.

Link to episode on youtube: https://youtu.be/gAutifs7FyE

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Short Bio: Amanda Hess is a critic-at-large at the New York Times focusing on internet and pop culture. In 2015 she was awarded the National Magazine Award in Public Interest. Her criticism, profiles and features have appeared in the New York Times magazine, ESPN the Magazine, Elle, New York magazine, Slate, and Pacific Standard. While at MacDowell, Amanda researched and drafted parts of her debut book, Second Life: Having a Child in the Digital Age (Doubleday, 2025), a work of memoir and criticism about her digital identity crisis as a new mother under the influence of popular technologies.

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The transcript of today's episode can be found below 👇

Eli: Hello, everybody. On this special segment of Neo News, we're expanding on our last conversation. I am so grateful to have with us Amanda Hess, who is the critic at large at The New York Times and the author of the wonderful excerpt we discussed in our last episode, as well as the author of the forthcoming book Second Life: Having a Child in the Digital Age, from which that segment was excerpted. Amanda, thanks so much for joining us.

Amanda: Thank you so much for having me.

Eli: Amanda, we kind of went through the details as you wrote them in the essay that ran in the Times Magazine. How would you recap it in your own words? What was the lived experience of the emotional roller coaster you found yourself on with your son?

Amanda: I was so naive about pregnancy in general and what could possibly happen. I had what seemed like a normal pregnancy, until I was about seven months along. There was a small marker in my blood that made my doctors want to keep an eye on my placenta. So I was getting an ultrasound to check the placenta—not the baby’s anatomy. But while I was there on the table, the technician or doctor saw something unusual. Eventually, I realized the exam was lasting much longer than it should, which felt really nightmarish. At previous ultrasounds, I’d always worried something might go wrong, but then I’d get the relief of the doctor saying, “Your baby looks great.”

That didn’t happen this time. The doctor came in and said he saw something he didn’t like. He explained that my son's tongue had been sticking out for much of the exam, which is unusual. Then he said a bunch of things that sounded like gibberish to me, but what I heard was that he thought my son might have Beckwith-Wiedemann syndrome. All I really absorbed was the word “syndrome,” which was terrifying to me at the time.

Then, for the next four weeks, I was on this kind of diagnostic journey. At the end, we found out that my son did, in fact, have Beckwith-Wiedemann syndrome. By the end of those four weeks, I was so relieved to get that diagnosis. I'm really grateful it was diagnosed while I was still pregnant, because I know so many families now who struggle to get a diagnosis or don’t receive one until much later. So I'm really happy about that. But those four weeks were really tough. My book is about how digital technologies influence parents, so I talk a little bit about that ultrasound experience, but also about what came afterward. I immediately started Googling everything the doctor told me.

Eli: And the doctor told you not to Google those things, right?

Amanda: Yeah, he said, “Don’t Google it,” and I was like, “Yeah, right—I’m definitely going to Google it.” It’s not that I wish I hadn’t; I don’t see a version of myself that wouldn’t have. But it definitely was… When you Google something like a rare syndrome, you find—or at least I found—medical images that had come from journals but ended up in Google images. I found tabloid coverage in places like the Daily Mail of kids with BWS. Eventually, I found some influencers whose kids had BWS and who explained it on TikTok. Then I found comment sections where people were making fun of those kids.

That experience is just so radically removed from my son’s actual life. It’s the complete opposite. On the one hand, the doctor was probably right—I wasn’t going to find what I was looking for on the internet. But on the other hand, I couldn't not look. I needed to know more, and my phone was the only thing available to me at the time.

Eli: Yeah. There’s so much I want to unpack there. Obviously, you’re an inquisitive mind as a journalist, but I think most people would have the same reflex—to want to know more, especially when so little information is provided. But before we go there, I want to get back to first principles.

I’ve read your work on so many different things over the years—things I had no idea about. You’ve covered pregnancy before. On November 18, you wrote an article about millennial pregnancies, including Demi Moore and Rihanna. When you say you were naive about what pregnancy would hold, how would you describe that to doctors? Because when we think about people having a child, there's often the assumption that they are prepared or well-informed. How would you describe the level of information vacuum you felt in that moment?

Amanda: I actually feel like I had a lot of information, but I didn’t necessarily understand how all of that information fit together. I had great prenatal care. My doctor offered me a bunch of genetic tests in the months before this was discovered, and I took most of them. I had pregnancy books and was using a pregnancy app. But I also had this sense that, because everything seemed so advanced and I had so much information, the medical system—or my doctors—were almost psychic. Like they could just look into my womb and know exactly what was happening.

It wasn’t until late in my pregnancy that I realized that wasn’t the case. I also assumed that after I’d taken all the prenatal tests offered to me, nothing else could be found. Nobody ever told me that, of course. I think it was maybe wishful thinking, but that’s how I experienced the process of learning new information.

Now I know that’s a completely unreasonable thing to expect from doctors. And I also know that the level of information doctors can access through tests is always expanding. When I got pregnant in 2020, all the information sources available to me were totally different from what my mother had when she was pregnant with me—and even from what my friends had just a few years earlier.

Eli: So let me ask you this. It sounds like the first real lived experience you had was in that moment—maybe the lights were dimmed, I don’t know—and the ultrasound tech is doing the exam. You’re sitting there thinking, “Wow, this is going on for a long time and no one is saying anything.” Then you get to a point where you're like, “This has gone on too long.” How would you describe the sensation of that absence of information? And how do you reckon with that as a parent, whether it’s in the exact moment or later when you're given a diagnosis but no way to synthesize what it will mean for your life?

Amanda: Yeah. I don’t know if this is helpful—it’s not practical advice—but it’s almost like both the information and the lack of information took on this paranoid quality for me. While I was lying there, of course I wanted to know what was going on. But I also had this superstition that if I didn’t ask—if I didn’t vocalize that I knew something was wrong—then at least in that moment, I could pretend everything was okay. Even though I knew something seemed off. There have been times I’ve gone to the doctor and they’re really checking something out, and then they say, “It’s nothing.” So I was like, if I just don’t open my mouth, maybe it will be nothing, and no one will ever say anything to me, and it will be fine.

When you reached out and wanted to talk, it made me reflect on how my doctors communicated with me and what they said, and whether there was any way that could be improved. First of all, I think my doctors did a great job in so many respects. But the main thing I kept thinking was: I was not a rational actor at that time. It seems silly to me now, because I have my beautiful son. But at the time, it was nightmarish. It was one of the lowest points I can remember. Just waiting there, then getting that vague information—“syndrome”—not knowing what it meant, just sensing that it was rare, and thinking rare equaled bad. All these associations came from nowhere—just things I’d absorbed over my lifetime. And the doctor...he’s not my therapist. His job is to do very specific things. So meeting at that moment was so tense. I was the most upset I’d ever been, and he was trying to do his job—to figure out what was going on in there—not necessarily to manage what was going on in here. But it was rough.

Eli: Let me ask about that. There's lots of discussion about what the actual role of doctors will be in the future with AI, which I know you've written a lot about. It seems like interpreting the scan is, for now at least, part of the doctor’s mandate. But I wonder, as you've thought about it, or as you communicate with neonatologists who listen to this podcast, whether you think there's room not just to share information, but to synthesize it—and not just synthesize information in general, but specifically for the patient in front of you and what they need.

Amanda: I think in an ideal world—and maybe that’s a world where our medical system isn’t constructed the way it is, or funded or insured the way it is—but it definitely seems like there were a lot of times when I was passed on to the next person who would fulfill the role I needed. In this case, it was a genetic counselor who called me the next day. So, it was really that night where I needed Google to fill the role for me because there was no one else. I had hired a doula who was amazing—just a sounding board, someone to talk to throughout my pregnancy—but she had never experienced a birth like mine. So really, there was only one place I could turn. What I really wanted was just someone—or something—to talk to me about this thing I couldn’t stop thinking about.

The next day, when I spoke with the genetic counselor—I still don’t know exactly how this whole system is structured—she worked for LabCorp. I remember thinking that was odd. It introduced a little bit of doubt. I wondered, is it her job to encourage me to take more tests? Would that be good for LabCorp?

Eli: Yeah, LabCorp—the multi-billion dollar company that runs a lot of tests, and one of its highest-profit line items is genetic testing. That LabCorp.

Amanda: Yeah. And I never knew her full name. I never saw her. We just talked over the phone. And I think she did her job very capably, for what her job was. But leaving the doctor’s office and entering this kind of dehumanized system was hard. And I think the accumulation of all of these things—on the one hand, one of the things I've struggled with most in raising a kid who has some medical complexities—is that from my pregnancy, I carry my own anxiety about medical situations and hospitals. I'm trying not to project that onto him. But he has something that requires him to have belly ultrasounds, which is exactly the kind of thing I had in pregnancy. So it's almost like I'm watching this little version of myself. And I just think that the accumulation of all of these things affected the way I thought about my child’s diagnosis, the idea of having a child with a disability, and my medical interactions going forward. None of that is simple to disentangle.

Eli: Is there a version of delivering this diagnosis—one of the things we talked about on the podcast is that of all the diagnoses, Beckwith-Wiedemann Syndrome is pretty well characterized. It’s not one of those random genetic deletions where we know nothing. It's been around for decades. I wonder, in that sentinel interaction where the doctor comes in and says a bunch of mumbo-jumbo and you hear “syndrome” and “don’t Google”—in a world of social media and endless information sources, are there ways the doctor, or other doctors, can help patients not only through those first moments of shock and grief, but also the night they go home? Because they are going to look it up. And what they’re likely to find are extremes of experience based on what algorithms surface.

Amanda: Yeah. I don’t know if you have insight into this, but when he said he “saw something he didn’t like,” I really didn’t like that. Since then, I’ve heard from someone else who said their doctor used that exact line, and it stuck with me. I don’t like the idea of a doctor looking at my child and saying they don’t like the look of him, you know? But at the same time, I didn’t want to receive the information. So, I think it would be very difficult for that first interaction to ever feel “just right.”

Later, after my son was officially diagnosed with BWS and we connected with doctors at CHOP—like Dr. Jennifer Kalish, who now manages much of my son’s care—she was really specific about what we might find on the internet. She reassured us that some of the things we’d see weren’t true. Some of the images, even in medical literature, don’t reflect typical presentation. When a child is photographed in a clinical setting, they’re often being asked to display the most extreme version of a symptom—like sticking their tongue out as far as possible—rather than just smiling. Dr. Kalish had seen enough families to know what parents were going to encounter online. She wanted us to understand that it wasn’t all a preview of our son’s life.

And one tricky thing about the internet is that you come across studies from 15 or 20 years ago with outdated mortality rates and information that’s no longer true. I think I learned from that experience, and I wish there were more guidance on how to manage those expectations when parents inevitably turn to Google.

Eli: Right. And often the thing they Google isn’t what the doctor would consider “ground truth.” The algorithm doesn’t prioritize veracity—it prioritizes popularity. And that can produce any number of outcomes, many of which are radically different from what a doctor would provide. These results may contain some truth, but they’re not necessarily helpful or applicable to the situation.

Let me ask this: In your article, you wrote beautifully about what you call the “Faustian bargain” of social media—this immense source of community and shared experience, especially in those moments of midnight silence when you’re caught between hearing the word “syndrome” and actually having a conversation with a genetic counselor.

Reflecting on both the upside and downside of social media, how do you think about, from the patient’s side, the benefits and risks of engaging online? And how would you counsel doctors to think about when it may be dangerous versus when it could be an asset?

Amanda: Yeah, I feel like the path of what to use the internet for became so much clearer after we actually had a diagnosis. Then I could join a Facebook group of people with BWS and their families. Our doctor also connected us with another family with a young child with BWS. Speaking to an actual human was incredibly helpful.

I have such an ambivalent relationship with social media, especially around posting images of kids. On one hand, one of the most steadying things I saw online was just happy families with children with BWS. That helped cleanse the scary, often exploitative images I’d seen. But at the same time, I don’t know that I would want to post medical-context images of my own child. That’s such a difficult line to walk. I don’t think the internet is evil, but I think social media is. It’s hard to operate positively in a system designed to scare people or make them feel bad just to keep them engaged.

I spoke to parents for my book who had posted about their kids online. They described the shift from blogging—which drew people who were actually interested in BWS—to TikTok, where suddenly they had an audience of millions who were just there to gawk at their kid. So, while social media helped me feel better at times, I’m not sure it’s beneficial in the long term.

Eli:Yeah. The question is, if the internet tells you everything’s going to be okay, do you just click away? Or do you keep searching?

Amanda:Yeah, during my pregnancy and afterward, I definitely used the internet to channel whatever I was feeling. Sometimes I was looking for reassurance that everything was fine, and sometimes I was seeking out the worst-case scenario so I could emotionally prepare.

The thing about the ultrasound experience that really stays with me is this: you’re lying there, they’re looking inside your body—something you can’t do yourself. You need an expert and a machine. But the technician doesn’t tell you anything. Then the doctor comes in with all the information. So much about pregnancy is difficult and visceral, and one of the hardest parts is feeling powerless. Just lying there in the dark, unable to access the information coming literally from your own body, is always going to be a difficult experience. And it mirrors the one I have now, when my son gets ultrasounds because BWS is a cancer predisposition syndrome. The technician is making notes, measuring things, and I’m just waiting for the other shoe to drop. If I had my phone, I’d be Googling things like “1.2 cm—what does that mean?” I’m looking for a sense of control. The phone is like this little companion that promises, “I’ll help you understand everything,” even though it’s a false sense of control. But that’s what I’m searching for. And I don’t know if medical spaces can be designed in a way that gives me that sense—so I don’t have to reach for the phone—but that’s what’s driving me there.

Eli Yeah, totally. Along those lines, you talk about this sub-identity that you get assigned by the algorithms—“medical mom.” You start getting fed all sorts of information about medical mysteries from all sorts of different sources. And then you talk a little about how you begin to interact with the medical system in a way where you've gathered your own information. You've done your own research—it’s a phrase we hear all the time—but you've done it out of emotional and intellectual necessity, because there's been such a profound lack of information coming to you from the medical system. I think a lot of neonatologists have encountered families, parents who have gathered a lot of their own information, come up with questions they want to ask, identified treatment protocols that seem to make sense. And then, when things differ or when new information is introduced, they may ask follow-up questions or advocate for their child in other ways.

As someone who has learned to be your own and your son's strongest self-advocate—and done the homework to do that—how do you think doctors can interact effectively with someone like you? What is the best way to empower the advocacy that we want all of our patients to have, because it shows they’re engaged in their care, while also hopefully still providing expertise that may differ from what the parent identified before the visit?

Amanda There were definitely times when I was waiting for a diagnosis or navigating a particularly tough medical time after my son was born when I was doing the real medical Googling—trying to find a medical answer. I’m not necessarily the best person to find the medical answer, but I am the best person to understand my son and report on his changing behavior and symptoms. It’s been striking to me how even his doctors, who I really love, see only a very small snapshot of his life and experience. For example, he eventually had a tongue reduction surgery. I love the doctor who performed the surgery—he did a wonderful job—but I don't think he even saw my son after he woke up, which is fine. But it means that he didn’t see my son’s intense, negative reaction to having tongue surgery, which you might expect from a three-year-old—or someone of any age.

I think the missing piece in this expertly assembled care team was people who were really curious about and understood the lasting emotional impact of something like that. I remember in the hospital after his surgery, I was confused about whether he was in intense pain because he wouldn't stop screaming. The nurse kept saying, "It's just the anesthesia leaving the body," which I’m sure was part of it. But he didn’t stop. We went home, and it was still a very big deal.

I just think there's an emotional piece that is maybe missing sometimes. I also have to say: I’m not my best self when I'm in a children’s hospital. I'm not acting my best when my son is waking up from surgery. I'm really trying—I'm in a desperate situation. And I don’t know, I’m sure that’s something doctors talk about, but it’s not like I’m bringing my A-game to the relationship every time I show up at that hospital. If it’s a checkup, then yes. But during the more intense medical events, I feel like I’m his exoskeleton in the hospital—I’m moving him around, holding him, trying to decide what he needs and doesn’t need—and inside, I’m flipping out.

It’s a very tense situation. I don’t feel like I’m in a place to tell other people how to interact with me better when I myself can barely manage. I’ve gotten a little better at it over time, but at first, it was really shocking—to have a child, to be the person legally and medically responsible for that child, and to have to approve surgeries or medical procedures.

It was all very new and hard. And I think—well, some things can’t be resolved. It just sucks. It’s bad. It sucks to watch your kid go through that. But I do remember after the surgery having the sense that the doctors maybe didn’t understand the depth of his emotional reaction because they just don’t see kids in that state for as long as the family does after they go home.

Eli Yeah. And certainly, the family is the expert on the experience of illness, even if doctors know more about the biological details of it. Along the lines of reckoning with a diagnosis or illness over the long term, you describe beautifully in the article the experience of going home and dealing with your “future little devil.” I want to read this segment because it touched me so profoundly. You say in the excerpt:

"The day we brought him home from the hospital, a technician trudged up the stairs to our apartment and dropped off a device the size of a rolling suitcase. It would pump oxygen into his nose via the prongs of an itty-bitty cannula. We wheeled it into our bedroom and parked it next to his bassinet. A few hours earlier, our son was monitored continuously by a team of pediatric nurses. Now it was just us and the machine. Its hulking body challenged us from the corner of the room. In the coming months, Mark and I would acquire a mastery over his care. There were dials to turn, special bottle nipples to source, squares of medical tape to press onto his red cheeks. I learned to place my hand in front of the cannula to confirm that its whisper of oxygen flowed as expected and to snake the oxygen tube down his onesie to prevent it from tangling around his neck. This was all exhausting and foreign until it became exhausting and familiar."

I love that segment. Amanda, how do you even begin to describe the experience of going home—when you have all the durable medical equipment that you need—but you’re now solely responsible for your child’s care? In that moment, or in preparation for that moment when you finally “graduate” from the NICU, as we affectionately call it, is there anything you feel the doctors could have done to prepare or support you through the early days—before everything became familiar?

Amanda For me, the toughest part of having my kid in the NICU was that I had a C-section, and it was hard to get there. I was recovering across a New York City block from where my son was. Everything was more difficult because this was 2020, and my husband and I couldn’t be in the NICU at the same time—we had to take turns. I think if there had been a way for me to be closer to him, that would have helped. Just to have more time to observe his care. This was a very blurry time—I was trying to pump breast milk that could be fed to him. That was difficult for me. But again, I don’t know. A few weeks earlier, if you had told me that my son would have an extra-large tongue and I’d have to hook him up to an oxygen machine while he slept, I’d have said, “What are you talking about?” It was so outside my realm of understanding.

I think what I really needed—before pregnancy, before the NICU, before coming home—was a greater acceptance and respect for human difference and disability. So much of the pregnancy internet—and books—reinforces the idea that the prize is a normal pregnancy and a normal baby. And I know a lot of pregnancies are perfectly normal, and I don’t want to freak anyone out unnecessarily. But if I had been more comfortable with those possibilities, if I had more exposure and education around them, that would have helped. That’s hard. That’s a big social change.

I also think one thing I didn’t understand was the difference between NICU monitoring and what we’d have at home. I describe in that piece how we went from continuous monitoring—all those beeps and wires—to none of it. And at the time, I didn’t realize that the things he was hooked up to weren’t strictly necessary on an emergency basis in the NICU or PICU. It wasn’t like he needed all that stuff one minute and didn’t need any of it the next. It was more that there’s a protocol for NICU care. Maybe what would have helped was just an explanation of what he was being taken off of and why he didn’t need it anymore. Again, maybe I missed that because I was also recovering from surgery. I don’t know.

Eli It sounds like there’s such a spectrum of how a single syndrome can manifest—and such a wide horizon of life ahead for someone with anatomical differences—that maybe there is a balance between diagnosis and hope. And maybe it’s less irresponsible than we think to provide hope for normalcy—or a variance of normalcy.

And I think hope is a lovely way to end this conversation. I also know that dessert must be served—urgently. Five minutes ago, dessert needed to be served. Amanda Hess, the article is called “My Son Has a Rare Syndrome, So I Turned to the Internet.” The book, which is now available wherever books are sold, is Second Life: Having a Child in the Digital Age. Amanda Hess, thank you so much for joining us on The Incubator.

AmandaThank you so much. I really appreciate you taking the time to talk with me.