#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 Cahan (00:03.769)

Hello, everybody. On this special segment of Neo News, it's an expansion of 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 this wonderful excerpt that we discussed on our last episode, as well as the author of the forthcoming book, Second Life, Having a Child in the Digital Age, from which this segment.

was sort of exerted. Amanda, thanks so much for joining us.

Amanda (00:37.838)

Thank you so much for having me.

Eli Cahan (00:40.119)

And, know, Amanda, we kind of went through the details as you wrote it in the essay that ran in the Times Magazine. You know, how do you recap it in your own words? What is the lived experience of the sort of emotional roller coaster that you found yourself on with this, your son?

Amanda (01:02.304)

Yeah, mean, I feel like I was so naive about pregnancy in general and what could possibly happen in one. But I had, you know, what seems like a normal pregnancy until I was like seven months pregnant. And then I had an ultrasound. There was like a little marker in my blood that my doctors wanted to suggested to my doctors that they wanted to keep an eye on my placenta.

And so I was getting an ultrasound for them to check that, like not to check the baby's anatomy. But when I was there on the table, the, I don't know if it was the technician or the doctor saw something unusual and eventually like I realized that the exam was lasting for a really long time, like longer than it should, which is kind of like a.

I mean, it felt really nightmarish at the time, because I think at previous ultrasounds, I had been thinking about that kind of thing being possible and happening and just waiting for the relief of the doctor coming in and being like, your baby looks great. And that didn't happen this time. And the doctor came in and said that he saw something he didn't like.

And he explained that my son's tongue was sticking out for like much of the exam, which is unusual. And then he said a bunch of like, it sounded like gibberish to me. But what he said was that he thought that my son might have Beckwith-Wiedemann syndrome. And all I really heard was syndrome, which at the time was a very scary word to me. And then, you know, the next four weeks I was on this

kind of diagnostic journey. And at the end, you know, we realized that my son did in fact have Beckwith-Wiedemann syndrome. And by the end of that four weeks, like, it was so relieved to get that diagnosis. And I'm really grateful that it was diagnosed when I was pregnant. Instead of, you know, I know so many families now who are like struggling to get their kids diagnosed or not diagnosed until much later.

Amanda (03:26.83)

So I'm really happy about that. But the four weeks before was really tough. And my book is about how digital technologies influence parents. And so I'm talking a little bit about the ultrasound and that experience of the ultrasound, but also just this experience that for me came later, which was I immediately start Googling all of these things that the doctor is telling me.

And so, you know, I became.

Eli Cahan (03:58.113)

And, and that the doctor is telling you don't, don't Google these things.

Amanda (04:01.76)

Yeah, he said, don't Google it. And I was like, yeah, right. I'm definitely going to Google it. And it's not like I wish I hadn't. I don't see a version of me that wasn't going to Google it. But I think it was definitely like, when you Google something that's like a rare syndrome, you find

Eli Cahan (04:07.077)

Hahaha

Amanda (04:29.644)

Or at least I found, I found medical images that had like been, you know, they had come from medical journals, but then gone into like Google images and they come up like on your search. And I found tabloid coverage of kids like in the Daily Mail who had had BWS. Eventually I found some influencers whose kids had BWS who would like explain it on TikTok. And then I found comments in a comment section with people.

you know, making fun of those kids. And it's just so, that experience is so radically removed from like the experience of like my son's actual life. It's so, it's like just a complete 180 and a complete opposite. And so I think, you know, on the one hand, the doctor is probably right that I wasn't going to find what I was looking for there.

But also, I couldn't not, like I needed to know more. And that's just the only thing, like my phone was the only thing that was available to me at the time.

Eli Cahan (05:43.109)

Yeah. Yeah. And so much I want to unpack there. Obviously I think you're, uh, you're an inquisitive mind as a journalist, but I think there are probably lots of people who would have that same reflex of just wanting to know more, especially when there's a positive information. You know, provided, which is something I want to get into. But before we go there, I just want to get back to first principles here for a second. mean, you have written, uh, about so many different things. I've read.

your work covering so many different things that I had no idea about over many, many years. You have covered pregnancy before on November 18th, you wrote an article about millennial pregnancies with Demi Moore and Rihanna and some other people. When you say that you were so naive about what pregnancy would hold, how would you describe that to doctors who, when we think about

people having a child, there seems to be some understanding that they are prepared or that there is an understanding. Like how do you describe the level of information vacuum that you feel in that moment?

Amanda (06:50.488)

Mm-hmm.

I know, I mean, I actually feel like I had a lot of information, but I didn't necessarily have a good understanding of how all of that information fit together. Like I had great prenatal care. My doctor offered me a bunch of like genetic tests in the months before this was discovered and I took most of them. And like I had like pregnancy books.

and an app that I was using. But I also just had this sense that was like, because everything, I seemed to have so much information and everything seemed advanced. I think I had this feeling like the medical system or my doctors were like psychic. Like they could like see into my womb and know exactly what was going on with it. And it wasn't until, you know, late in my pregnancy that I realized that it wasn't the case.

And I think I also had this assumption that like, I had this idea that after I took all of the prenatal tests that were offered to me at various stages, then it's like nothing else could be found. You know what I mean? Which like, of course, like nobody ever said that to me. But I think, and maybe it was like wishful thinking.

That's like how I experienced just like the procession of like information revelation or whatever. And now I know that that's like a completely unreasonable thing to expect from doctors. But I also know that like the level of information that even doctors can try to get.

Amanda (08:52.494)

like through tests is like expanding. And so, yeah, I think, you know, when at the time that I got pregnant in 2020, all of the kind of like information seeking sources were like completely different than like what my mother experienced when she was pregnant with me. And they were even like a little different than what my friends would have experienced like a few years before.

Eli Cahan (09:20.945)

so let me, let me ask you this. it sounds like the first sort of lived experience that you have in this moment is sitting in this. imagine the lights were dimmed. I don't know, but like the lights are potentially dimmed and the ultrasound tech is doing the ultrasound and you're like sitting there and you're thinking, wow, this is going on for a long time and no one sharing any information. And you get to a point where you're like, this is going on for too much of a long time. how do you describe this sensation of the, the absence of information?

and, and how you reckon with that as a, as a parent, whether it's in the exact moments of getting this ultrasound or whether it's later on when you are, provided with a diagnosis, but no mechanism with which to synthesize how that's going to stand to affect your life.

Amanda (10:33.39)

Yeah, I mean, I don't know if this is helpful. like, this is not practical advice, but it's almost as if information and the lack of information took on a paranoid cast for me, where when I was laying down there, of course I wanted to know what was going on, but I also had this superstition.

that if the information was just never, if I never asked, if I didn't like vocalize that I knew that something was wrong, that like at least for this moment on the table, I could just like pretend that nothing was wrong, even though I knew that it seemed unusual. Cause there are many times that I go to the doctor and it's like, they're like really checking something out. And then they're like, you know, it's nothing or whatever. And so I was like, if I just don't open my mouth.

Eli Cahan (11:03.887)

Huh.

Amanda (11:33.71)

then maybe it will be nothing and no one will ever say anything to me and it will be completely fine. And I think, you know, when you reached out to me and wanted to talk, it really made me reflect on like how my doctors communicated with me and what they said and like whether there was any way for that to be improved and like.

First of all, I think my doctor's did such a good job in so many respects. And also, the main thing that I kept thinking was I was not a rational actor at that time. I was having, this seems very silly to me now because I have my beautiful son. But at the time, was nightmarish. It was a very, very low moment.

It was like the worst moment that I could remember. Just waiting there and then getting the information, not knowing what the syndrome was, just this like vague sense that it was rare and like thinking that rare equaled bad. know, like all of these associations that are just like coming from nowhere, like coming from things that I've absorbed over my lifetime.

And this doctor who like, it's like, you know, he's not like my therapist. It's not, it's his job to like, do all of the very specific things that he does. Like us meeting at that moment is so tense because it's like me, like just the most upset I've ever been. And then my doctor who's like, you know, it's just really his job to like figure out what's going on in there.

and not necessarily treat what's going on up here. But it was rough.

Eli Cahan (13:32.565)

Is it, is it what, but I mean, let me, let me ask about that. mean, there's lots of discussion about what the actual role of doctors, will be in, in the future with, AI, which I know you've written a lot about. I mean, it seems like interpreting the scan is maybe for now, at least part of the doctor's mandate, but I wonder as you've thought about it or as you communicate with an unitologist who listened to this podcast.

Amanda (13:40.641)

Mm-hmm.

Eli Cahan (14:01.165)

whether you think there is room to also not just share information, but synthesize information, and not just synthesize information, but synthesize information specifically in a way for the patient in front of you and what they need.

Amanda (14:17.602)

Yeah, I mean, I think like in an ideal world, and maybe that's a world where our medical system is not constructed the way that it is and funded the way that it is and like insured the way that it is. But it definitely seems like, you know, there were a lot of times when I was like passed on to the next person who would fulfill

the role that I needed. And in this case, it was like a genetic counselor who called me the next day. So it was really that night where I was just like, I needed Google to fill the role for me because there was no one, like I hired a doula who was so, like she was so amazing just as like a sounding board of someone.

to talk to you throughout my pregnancy, but she had never experienced a birth like that. And so it was really, there was only one place that I could ask. But what I really wanted was just for someone or something to talk to me about this thing that I couldn't stop thinking about. And then the next day when I spoke with the genetic counselor, she, I don't know how...

Eli Cahan (15:24.921)

Yeah.

Eli Cahan (15:36.92)

Yeah.

Amanda (15:46.99)

I don't know how this, I still don't know how this entire thing is structured, but she worked for LabCorp and I remember thinking that was odd. I remember thinking it was odd. I don't know, because I was like, it introduced this like little bit of doubt in me where I was like, is it her job to, does she want me to take more tests? Would that be good for LabCorp?

Eli Cahan (15:57.101)

Hahaha

Eli Cahan (16:16.825)

Yeah, LabCorp, the multi-billion dollar company that runs a lot of tests and makes one of the highest profit line items it has is genetic tests, that LabCorp.

Amanda (16:17.506)

You know?

Amanda (16:27.724)

Yeah. And so I felt, and I never, you know, I knew like her first name. I never saw her. We just talked over the phone. and I think she also like did her job really capably for what her job was. but yeah, it was like leaving the doctor's office and then entering this kind of like dehumanized system was hard. And I think

the accumulation of all of these things.

On the one hand, like one of the things that I've struggled with the most in like raising a kid who has some medical complexities is that from my pregnancy, I have my own just like anxiety of medical situations, in hospitals that I'm trying not to project onto him. But he has something that like,

requires him to have like belly ultrasounds, which is like exactly the kind of thing that I had in my pregnancy. And so it's like, it's almost like I'm watching this like little version of myself or whatever. And I just think like the accumulation of all of these things.

affected the way that A, like I thought about my child's, the condition that he was eventually diagnosed with. It affected like how I thought about just the idea of having a child like with a disability. And I think it, it like colored my medical interactions going forward. And I don't think any of that is like particularly simple to disentangle.

Eli Cahan (18:22.573)

Is there a version of delivering this, this diagnosis that, one of the things that we were talking about on the podcast is of all the diagnoses Beckwith, we demand is pretty well characterized. I mean, it's not one of these random genetic deletions. know nothing about, you know, it's been around for decades. It's pretty well characterized. I wonder, you know, in this sort of sentinel interaction where the doctor comes in and says,

a bunch of mumbo jumbo that you hear as syndrome, and don't Google. You know, in a world of social media and so many information sources, can you think of ways in which that doctor or other doctors can help patients through not only that, those first couple moments of like shock and grief, hearing the word syndrome,

but also the night when they go home and they are after knowing that they're going to look it up. And probably what they're going to find is the extremes of experience based on what these algorithms select for.

Amanda (19:40.108)

Yeah, I mean, I don't know if you have any insight into this, but when he said that he saw something he didn't like, I didn't like that. And I've since heard from somebody else who said that when they had a similar experience, that was the line that their doctor used as well. And I think it's really stuck with me because...

I don't like a doctor looking at my child, you know, and saying that he doesn't like the look of him. You know what I mean? But at the same time, like, I just, simply didn't want to know, like, I didn't want to receive the information that he was giving me, you know? And so I think it would be very difficult for that first interaction to be something that I, you know, feel.

Eli Cahan (20:15.801)

Yeah, yeah, yeah.

Amanda (20:36.59)

like I have no notes on. But later after my son was actually diagnosed with BWS and we connected with doctors at CHOP who, you know, study this. We did, you know, Dr. Jennifer Kalish who like manages much of my son's care there. She was really...

specific with us about what we might find on the internet and wanted to reassure us that some of those things were not true and that some of the images are like, even in the, it's not just that it's like the most extreme manifestation, but it's like when you have a child who's photographed in a medical setting, it's often like, okay, so your big tongue, like we wanna see,

your tongue stuck out as far as you can stick out your tongue, as opposed to just a smiling picture of the kid or whatever. And so I think she, from working with so many families, knew the kinds of things that people were seeing and wanted to reassure us that, and knew that people were gonna be looking and wanted to reassure us that it was not all.

just like a preview of what our son's life was gonna be like. And I think one of the trickier things about the internet is like studies come up, know, and I, because I'm a journalist, I'm Googling, like I'm like searching in like medical databases and I'm searching in like academic databases and studies are coming up from like 15, 20 years ago that have like mortality rates.

and stuff that's just no longer true in any way. So I think that's something, that's definitely something that I learned from that experience myself. But yeah, I think just understanding that people will Google something and then maybe being able to speak with them about how to manage their expectations of that experience.

Eli Cahan (22:29.017)

Yeah.

Eli Cahan (22:56.675)

Right, right, and that often the thing they're gonna Google is not the thing that the doctor is gonna take as the ground truth of sort of expectations on.

how the situation is going to play out, or I should say that the thing that will populate at the top of their Google almost by definition, the algorithm is not sorting for veracity, it's sorting for popularity. And that...

Amanda (23:27.176)

Mm-hmm.

Eli Cahan (23:31.247)

that could yield any sort of outcome, but many of which strike me not as the sources of information that we think about, but as remarkably different sources of information that may have elements of truth, but not yielding the sort of data that is useful to you in that moment, but it is just sort of giving you a response to that situation.

Amanda (23:55.106)

Right. Yeah, I think that's true.

Eli Cahan (23:58.053)

Let me ask this. You write in the article beautifully about what you describe as like kind of this Faustian bargain of social media where it's like this immense source of community and shared experience, especially in these moments of like midnight silence at home in between a

syndrome being populated in your head and an actual conversation with a genetic counselor. As you reflect on the upsides and downsides of social media, you wrote beautifully about it in the article. And I'm sure in the book, it's the same thing, but how do you think about from the patient side, the benefits and the risks of engaging with social media and how would you counsel doctors to think about, you know,

the situations in which it is potentially dangerous for their patients to engage with it versus when it may actually be an asset.

Amanda (25:01.25)

Yeah, I mean, I feel like the path of like what I should use the internet for became so much clearer after we actually had a diagnosis and I could like join a Facebook group of people who have BWS and their families. It was also like our doctor put us in touch with like another family with a little kid who had BWS and so just.

like actually speaking to a human was really helpful. And I don't know, I have such an ambivalent relationship with social media, especially with like, you know, putting images of kids online. Because on the one hand, like one of the best things that one of the most steadying things that I saw on social media was just like images of like happy families of like kids with BWS that really like

cleansed all of these like kind of scary medical images that I had seen or like exploitative kind of tabloid images. And so like it was really helpful to me to see that. But at the same time, like, you know, because like, it's just my kid like did not necessarily, I wouldn't necessarily see a kid who looked just like my kid in like a baby gap ad or whatever.

but I also, you know, I'm not sure that I would want to put my kids, like images of my kid online in a medical context, you know? and that's like such a difficult line to walk. don't know. I mean, I really feel like I don't think the internet is evil, but I think social media is. And so it's just, hard to operate like in a really positive way in a system that's like set up to like make people feel bad about themselves or to scare people or whatever, to just keep them kind of engaged. And I think, you know, I ended up talking with some parents from my book,

who like post stuff about their kids online. And they, you know, they described a real shift between when they started like blogging, like writing blog posts and then getting a following of people who were like just interested in BWS because like their kids had it or somebody else in their family had it or they themselves had it. And then moving to social media like TikTok, where suddenly their potential audience was like,

millions of people who had never heard of BWS and were just there to sort of like gawk at a picture of their kid, you know, it's such a different thing. So even though there was like some benefit to me to just like make me feel better, I don't know that it's like beneficial in the long

Eli Cahan (29:03.491)

Yeah. Yeah. I guess the question is if, if the internet tells you everything's going to be okay, like do you click the next link or you're like, okay. Great. You know, you sign off.

Amanda (29:12.904)

Yeah, I mean, I found like I would at different points, like in my pregnancy and afterward, I would really use the internet to like channel whatever I was feeling. So sometimes I would be looking for reassurance that nothing was wrong. And sometimes I was like looking for the worst possible scenario so that I could prepare myself for what might be coming next.

I think like one of the things, the thing about the ultrasound experience that really stays with me is like, you're laying there, they're looking inside your body, which is like, you know, I can't do that myself. Like it's, need like an expert who with their like big machine to be able to do that. But the technician like isn't telling you what's going on. And then like the doctor like has the information and comes and tells you. And there's so much about pregnancy that's just like,

So difficult and visceral and like one of the worst things about it is just like feeling powerless over it. And so, I don't know, yeah, just laying down in the dark with like not being able to access this information that's coming like literally from my own body is a difficult, that's just always gonna be a difficult.

experience, I think. And it's a similar experience to the one I have where like, because BWS is a cancer predisposition syndrome, like my son gets these ultrasounds and you know, the technician is like making little notes, like measuring things, you know, and I'm just waiting for like the next shoe to drop.

And so like, would definitely, if I had my phone, I'd be Googling like one point, I was like 1.2 centimeter, like, you know, what's that? Or whatever. And I think what I'm, I'm just like, I'm looking for a sense of control. And the phone is like my little companion that's like, I'll help you control everything, even though like it's really this false sense. But I think that's what I'm looking for. And I don't know if, you know.

Eli Cahan (31:11.481)

Ha ha ha.

Amanda (31:32.384)

medical spaces can be designed in such a way to like give me that feeling where I don't have to look at the phone, but that's what's driving me there.

Eli Cahan (31:43.683)

Yeah. Yeah, totally. Along those lines, you speak to this sub identity that you get assigned by the algorithms, which is, medical mom, you start getting fed all sorts of. You know, information about medical mysteries from all sorts of different, you know, sources. And then you speak to a little bit kind of how, how you begin to interact with the medical system in a way that, you know, you've, you've.

gathered your own information. You've done your own research. It's like a phrase we hear all the time, but you've done it sort of out of, emotional and, intellectual necessity because there's been such a profound paucity of information coming to you from the medical system. And I think a lot of neonatologists will have encountered families, parents, who have gathered a lot of their own information, come up with.

questions that they want to ask, identified sort of protocols of treatment that seem to make sense. And then when things differ or when there's new pieces of information introduced, they may ask follow-up questions. They may advocate for their child in other ways. And I guess as someone who has learned to, out of necessity, be your own and your son's strongest self advocate and you have

done the homework in order to do that. How do you think doctors can interact with someone like you effectively? What is the best way to empower the advocacy that we want all of our patients to have? Because it means they're so engaged with their healthcare. And at the same time, you know, still hopefully provide a source of expertise that may differ from what, you know, the, the parent had identified prior to the visit.

Amanda (33:42.956)

Yeah, I mean, you know, like there were definitely times when I was waiting for a diagnosis or I was navigating like a particularly tough medical time after my son was born where I was like doing the real medical Googling, where I was trying to find a medical answer, which is something that like, I am not necessarily the best person to find the medical answer, but I am the best person to like,

understand my son and report on his changing behavior and his symptoms and stuff like that. And it's really, it's been striking to me how even, you know, his doctors who I really love, they see this very small snapshot of his life and experience and, you know, like he, so he eventually had a tongue reduction surgery and

I love the doctor so much who did his surgery and he did a wonderful job. But I don't think he even saw him, like my son after he woke up, which is fine. But it means that like, you know, my son had this intense, intensely negative reaction to having like a tongue surgery, as you might expect.

like a three-year-old or someone of any age to have. And I think that the missing piece for me in this care team that was so like expertly put together was just like people who were like really curious and understood like the lasting emotional impact of something like that. I remember like in the hospital,

after his surgery, just me being really confused as to whether he was in like intense pain because he wouldn't, he would like not stop screaming. And the nurse kept saying, it's just the anesthesia leaving the body, which I'm sure was part of it. But then it just, it like, he, didn't stop. Like we went home and it was still, it was a very big deal.

Amanda (36:06.382)

Yeah, I just, think there's an emotional piece that is maybe missing sometimes. But also like I have to say like, I'm not my best when I'm in a children's hospital. I'm not acting my best when my son like is waking up from surgery. Like I'm really trying, like I'm like in a desperate situation. And so I don't know. I'm sure that's something that doctors talk about. But it's not as if like I'm bringing my A game necessarily to the relationship every time I show up at that hospital. if he's having a checkup, then yes. But some of the more intense medical things, you know.

Eli Cahan (36:53.589)

Yeah.

Amanda (37:03.886)

where I'm just like his, I feel like I'm his exoskeleton in the hospital and I'm like moving him around and holding him and trying to like decide what he needs and doesn't need like, and inside I'm flipping out. And so, you know, I, it's a very tense, it's a very tense situation. And I don't, I feel like it's not, I don't feel like I'm coming from a place where I can like.

tell other people how to interact with me better when like I'm, I, you know, like it's, it's a rough thing to, for me to even do. and I've gotten like a little bit better at it over time, but at first it was like really shocking to have a child, to be the person who is like legally and medically responsible for that child, for that child to like have a surgery or have any other kind of like medical, whatever.

Um, it was all very, very new and hard. And I think, you know, I don't know. I like, I think.

My doctors, there's some things that just can't be resolved because it's like, it just sucks and it's bad. It sucks to watch your kid have that happen to them, you know? But I do remember after the surgery, having this sense the doctors maybe didn't understand the deepness of his emotional reaction because...

They're just not seeing kids in that situation for as long period of time as a family is, after they go home and whatever.

Eli Cahan (38:53.786)

Yeah.

Yeah. And certainly, certainly the family is the expert on the experience of illness, even if the doctors know more about the, the biological details of, illness, along the lines of sort of, you know, reckoning with a diagnosis or with an illness over the longterm, you described beautifully in the article, the experience of going home.

And dealing with your future little devil. I want to read this segment because it sort of 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. 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, you know, how in the world do you describe the experience of going home even when you have all the durable medical equipment that you need? How do you describe the experience of going home to care for a child with medical?

Eli Cahan (40:46.245)

and in that moment or in preparation for that moment of when you finally graduate from the NICU as we affectionately call it, is there anything that you feel like the doctors could have done to prepare you for that or to support you through certainly the early days of exhaustingness and foreignness before it becomes familiar?

Amanda (41:07.47)

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 like recovering across, you know, a New York City block away in this hospital from where my son was. It was also, everything was extra difficult because this was 2020. And so my husband and I could not be in the NICU at the same time. We were like taking turns.

And so I think if there had been a place, a way for me to be closer to him, I think that would have been helpful for me to just like have more time to observe his care when like, you know, this is like a very blurry time when I'm like trying to pump breast milk that can be like fed to my son.

so that was like, that was a difficulty for me. but again, it's like, I don't know. It's, I was in a situation where it's like a few weeks earlier, if you had told me that my son was going to have an extra large tongue and I would have to like hook an oxygen machine up to him when he slept, I would be like, what, like literally, what are you talking about? Like it was so outside of my realm of understanding. I think what I really needed in my life, like

before pregnancy, before the NICU, before I came home, was just like a greater acceptance and respect for human difference and disability. not this like, there's so many parts of the pregnancy internet or just the whole complex, like the books that really just.

in subtle and not subtle ways reinforces this idea of like the prize to like normal pregnancy and the prize normal baby. And I know that a lot of pregnancies are perfectly normal and I don't want to freak anyone out unnecessarily. But I think just like if I had like, if I were more comfortable with all of that stuff and this is like, you know, a thing that I

Amanda (43:29.262)

I feel like I personally was really just lacking in my experience and education. That would have been more helpful. That would have been helpful to me. And I think that's hard. Like that's something that, you know, that's a big social change, I think, in order to like make that something that's widespread. But yeah.

I don't know, I also think like one thing I didn't understand is that, you know, I describe in that piece, like the difference between going from this like continuous monitoring, all these beeps and things hooked up to him, and then home where there was none of that and it was just me. And I think the thing that I understood later was that all of the things that he was hooked up to were not like,

strictly necessary on an emergency basis, like in the NICU or the PICU. Like it wasn't like one minute he needed all of this stuff and the next minute he didn't need any of it. It's more like, you know, there's like a protocol of like things that go along with like monitoring a baby in the NICU or whatever. And maybe like what I would have

benefited from was just like an explanation of like what they were taking him off of and why he like didn't need it anymore or whatever. And again like maybe that's something that I missed because I was like myself recovering from surgery. I don't know.

Eli Cahan (45:13.881)

Yeah. Yeah. Well, it sounds like there is such a spectrum of manifestation of even a single syndrome. And certainly there's such a wide horizon of life ahead of somebody, even with some phenotypic anatomical differences that maybe there is a balance between, you know,

a diagnosis and hope that I think is less irresponsible than sometimes we think it could be to provide hope for normalcy or a variance of normalcy, which I think hope is a lovely way to finish this conversation. I also know that dessert must be served urgently. Five minutes ago, dessert needed to be served. Amanda Hess, the

Amanda (46:07.918)

Yeah, for sure.

Eli Cahan (46:13.541)

Article is called my son has a rare syndrome. So I turned to the internet, the book, which is now available on sale everywhere books are sold is called second life, having a child in the digital age. I made a house. Thank you so much for joining us on the incubator.

Amanda (46:29.73)

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