When journalist Amanda Hess was 7 months pregnant, a routine ultrasound revealed that her baby seemed to get out of her tongue. Hess was charmed by the visual, but his doctors warned that this could be a sign of a rare genetic condition. What followed was a spiral of MRI, genetic tests, consultations with specialists and diving at the end of the evening on the internet to obtain answers.
“After several weeks of testing, when I was about eight months pregnant, we learned that my son has Beckwith-Wiedemann syndrome [BWS]which is a proliferation disorder which, among other things, can make a child have a very wide language, “said Hess.
BWS is a genetic condition that occurs in approximately one in 11,000. In addition to extended languages, children with BWS may have enlarged abdominal organs and an increased risk of developing certain cancers during childhood.
Hess was frustrated that the application she used seemed to focus exclusively on healthy pregnancies – the diagnosis of the BWS fell beyond its scope. She turned to Google, but the results of the research were not reassuring. She has read new tabloids and sons of Reddit of cruel people about the existence of babies with the BWS. An influencer even suggested that the syndrome was caused by stressed mothers who had their own language during pregnancy.
“It's completely ridiculous,” said Hess. “I know that the genetic state of my son was not caused by something I thought during pregnancy. But at the time, there was this substantial part of myself that really felt that it was true.”
When Hess's deadline has finally arrived, she worked for 24 hours before her doctors recommend having a cesarean. It was then that she started to cry; With hindsight now, she says that her research on BWS had scared her to meet her son. But after birth, these fears disappeared.
“It was a person, finally, with whom I had a real relationship, all these images imagined from him and the potential lives for him dissolved,” she said. “And it is not really at this point that I realized how much the handicap can be so divorced from its human context through these technologies and how I really needed to 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 on how technology shapes all aspects of parenting – of our online identities to the pressures of sharing our lives in real time.
“I started to think of writing a book on technology before getting pregnant, not in a way planning to focus it on this time in my life,” she said. “And then instantly once I got pregnant, my relationship with technology has become so much more intense. … It was not until later that I really started to understand that these technologies work like narrative devices, and they worked in my life to tell me a certain story about my parent role and expectations for my child.”
Strengths of the interview
Second life: having a child in the digital age
PEGGUIN Random House
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PEGGUIN Random House
On pregnancy applications compared to traditional books on pregnancy
My phone was still there. And so even if I did not intend to bring my pregnancy application with me, it was constantly there. And so I found myself looking at him again and again. In addition, a book is a defined document. It covers a limited number of scenarios, and there is, like a real limitation to this. But that also means that it cannot be a sort of modified and designed so that it serves you new information apparently like every day or all hours. I found myself watching [the pregnancy app] Flo during my pregnancy, like 10 times a day, even if … I was not looking for … for real advice or real information. I did not take this information and did not change my diet or my movements. I think I was trying to reassure that I was fine. … and so it has become this true intimacy for our pseudo relationship that I did not have with a information pregnancy book.
On advanced prenatal and embryonic tests designed to predict disabilities and anomalies
I think that the thing that worries me most in these technologies is that it seems to be so much interest and investment in understanding certain children – and trying to prevent children with certain differences – and very little investment in care for these children, research that could help these children and adults. And so I really found myself on both sides of this fracture, where I had access to what was at the time certain advanced prenatal tests, but I also could see after the birth of my child that he was born in a world that does not innovate in the space of the adaptation of the handicaps in the way in which he innovates in the space to try to prevent them.
On the potential impact of monitoring the baby monitor
I think there is in this way that surveillance can be confused with care, attention and love. And I had this experience with my children where I had installed this baby fancy monitor that I tested for the book, and through it … The video was downloaded from a cloud server, so that I can watch them from anywhere. … But it was not until a night when the camera was installed and I lying down with my son in his bed, I felt this presence in the corner of the room, these, like four bright red eyes. … I could really see him from his point of view. Like, he does not see this beautiful smiling image of me looking at him. He sees four mechanical eyes.
Amanda Hess writes on Internet culture and genre to The New York Times.
Loreto Caceres / Penguin Random House
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I spoke with my friend who had used a camera with her child who finally asked that she was withdrawn at the age of 3 or something and could articulate this because she did not want “the eye”, as she called her, to look at her in her room. And I think that so many times these technologies are bought by parents even before their children were born. And they want to do what is good and they are afraid and they want to make sure they have everything they need, as before the child's arrival. And so we don't even give ourselves a chance to really understand what we get and if we really need it.
On snoors, a high technology cradle that responds to the cry of a baby with movement
I spent so long trying to help out the snoo to try to make it work for my baby, until ultimately I see that I really found my child, and that he had become so linked to technology that I really did not know where the end of the machine ended and where the sleep models of my son started. And so this technology which is often sold as a tool to help us better understand our children and get information about data, in this case, for me, it made me more difficult to understand what was going on with him and how he really wanted to sleep.
On the search for support of online communities and forums on BWS
The simple fact of seeing the thousands of people who are members of these groups and to see these figures is so comforting for me because it reminds me that my son is not alone. We were not alone with him. There are all this community of people who look like each other in one way or another. They experience some of the same social stigma. They experience some of the same medical trauma and medical experiences. They simply do not exist in a geographic community because the condition is too rare. These groups are therefore a real reminder for me that the Internet can be a balm for communities of people who cannot access each other offline.
Sam Briger and Susan Nyakundi produced and published this interview for Broadcast. Bridget Bentz, Molly Seavy-Nesper and Meghan Sullivan adapted it for the web.
