When journalist Amanda Hess was 7 months pregnant, a routine ultrasound revealed that her baby appeared to be sticking out his tongue. Hess was charmed by the visual, but her doctors warned that it might be sign of a rare genetic condition. What followed was a spiral of MRIs, genetic testing, consultations with specialists and late-night dive into the internet for answers.
"After several weeks of tests, when I was about eight months pregnant, we learned that my son has Beckwith-Wiedemann syndrome [BWS], which is an overgrowth disorder that, among other things, can cause a child to have a very enlarged tongue," Hess says.
BWS is a genetic condition that occurs in about one in 11,000 births. In addition to enlarged tongues, children with BWS may have enlarged abdominal organs and an increased risk of developing certain cancers during childhood.
Hess was frustrated that the app she had been using seemed to focus exclusively on healthy pregnancies — the BWS diagnosis fell beyond its scope. She turned to Google, but the search results weren't reassuring. She read tabloid news stories and Reddit threads of people who were cruel about the existence of babies with the BWS. One influencer even suggested that the syndrome was caused by stressed out mothers who had figuratively bit their own tongues during pregnancy.
"It's completely ludicrous," Hess says. "I know that my son's genetic condition was not caused by something I thought during pregnancy. But at the time, there was this sub-rational part of myself that really felt that that was true."
When Hess' due date finally came, she labored for 24-hours before her doctors recommended she have a C-section. That's when she started crying; looking back now, she says her research into BWS had made her afraid to meet her son. But after his birth, those fears disappeared.
"He was a person, finally, who I had a real relationship with, all of these imagined images of him and potential lives for him dissolved," she says. "And it was really only at that moment that I realized how disability can be so divorced from its human context through these technologies and how I really needed to just meet this baby in order to put it back there."
In the new book, Second Life: Having A Child In The Digital Age, Hess writes about how technology shapes every aspect of parenting — from our online identities to the pressures of sharing our lives in real-time.
"I started to think about writing a book about technology before I became pregnant, not sort of planning to focus it on this time in my life," she says. "And then instantly once I became pregnant, my relationship with technology became so much more intense. ... It was only later that I really began to understand that these technologies work as narrative devices, and they were working in my life to tell me a certain story about my role as a parent and the expectations for my child."
Interview highlights
On pregnancy apps vs. traditional books on pregnancy
My phone was always there. And so even if I did not intend to bring my pregnancy app with me, it was there constantly. And so I found myself looking at it again and again. Also, a book is a set document. It covers a limited number of scenarios, and there's, like, a real limitation to that. But it also means that it can't be sort of tweaked and engineered so that it serves you some seemingly new piece of information like every day or every few hours. I found myself looking at [the pregnancy app] Flo during my pregnancy, like, 10 times a day, even though … I was not looking ... for actual advice or real information. I wasn't taking that information and changing my diet or my movements. I think I was looking for reassurance that I was doing OK. ... And so there became this real intimacy to our pseudo relationship that I didn't have with an informational pregnancy book.
On advanced prenatal and embryonic testing designed to predict disabilities and abnormalities
I think the thing that worries me the most about these technologies is there seems to be so much interest and investment in understanding what certain children will be like — and trying to prevent children with certain differences — and very little investment in the care for those children, research that could help these children and adults. And so I really found myself on both sides of this divide, where I had access to what was at the time some advanced prenatal testing, but was also able to see after my child's birth that he was being born into a world that is not innovating in the space of accommodating disabilities in the way that it is innovating in the space of trying to prevent them.
On the potential impact of baby monitor surveillance
I think there's this way that surveillance can become confused with care and attention and love. And I had this experience with my kids where I had installed this fancy baby monitor that I was testing out for the book, and through it … the video was uploaded to some cloud server, so I could watch them from anywhere. … But it wasn't until one night when the camera was set up and I laid down with my son in his bed I sensed this presence in the corner of the room, these, like, four red glowing eyes. … I could really see it from his perspective. Like, he's not seeing this beautiful smiling image of me watching him. He is seeing four mechanical eyes.
I spoke with my friend who had used a camera with her kid who eventually asked for it to be taken out when she was 3 years old or something and could articulate this because she didn't want "the eye," as she called it, to be watching her in her bedroom. And I think so many times these technologies are purchased by parents before their kids are even born. And they want to do what's right and they're scared and they want to make sure that they have everything they need, like before the child arrives. And so we're not even giving ourselves a chance to really understand what it is we're getting and whether we actually need it.
On the SNOO, a high-tech bassinet that responds to a baby's cry with motion
I spent such a long time trying to troubleshoot the SNOO to try to get it to work for my baby, until eventually I found that I was really troubleshooting my child, and he had become so entwined with the technology that I really didn't know where the workings of the machine ended and where my son's sleep patterns began. And so this technology that's often sold as a tool to help us better understand our kids and get data insights into them, in this case, for me, it actually made it more difficult for me to understand what was going on with him and how he really wanted to sleep.
On finding support from online communities and forums about BWS
Just seeing the thousands of people who are members of these groups and seeing those numbers is so comforting to me because it reminds me that my son is not alone. We were not alone with him. There is this whole community of people who look the same in some way. They experience some of the same social stigmas. They experience some of the same medical traumas and medical experiences. They just don't exist in a geographical community because the condition is too rare. So these groups are a real reminder for me that the internet can be such a balm to communities of people who can't access each other offline.
Sam Briger and Susan Nyakundi produced and edited this interview for broadcast. Bridget Bentz, Molly Seavy-Nesper and Meghan Sullivan adapted it for the web.
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