I did not know that anything was unusual until I was seven months pregnant. Inside the exam room, the technician dimmed the lights and stood astride her mysterious station. She worked her probe into the hard rind of my belly and offered selections from her trove of professional small talk: Do you know the sex? Have you picked a name? I wanted to slice the technician out of the scene, to watch my baby on the screen with silent focus, but I also wanted to seem normal and good. So when she said, “He’s sticking his tongue out,” I said: “Awwww. … ”
The technician fussed with the machine. She twisted its dials and clacked at its keys and then left the room. The gel felt thick on my skin. I missed my phone. I wondered if there were any new work emails in there. When the technician returned, she ordered more poses and captured more shots. I had reported to the doctor’s office for a routine scan, but as in a dream, the routine kept repeating. I watched the technician map my baby’s face for secret reasons. For an hour I lay on her table, cold dread pooling inside my body.
The doctor rapped on the door. He told me that he had seen something he did not like. He wondered if it could be a case of — he said a strange word, then another, then the word “syndrome.” The kidneys and torso were measuring large, he explained. The baby was growing very fast. The tongue was protruding from the mouth. It’s not supposed to do that. The information passed uncomprehendingly through me. I would be assigned a genetic counselor, a prenatal psychologist, an obstetrician who specialized in high-risk pregnancies. Amniotic fluid would be extracted from my uterus and sent for a battery of genetic tests. I asked the doctor to write the syndrome’s name on a piece of paper. “Don’t Google it,” he advised me. Of course, as soon as I seized my phone, I did.
Beckwith-Wiedemann Syndrome, or BWS, is an overgrowth disorder that affects one in 10,000 births. Its features manifest most significantly in childhood. Babies born with BWS may exhibit macrosomia, or excessive growth; they may have hemihypertrophy, or asymmetrical growth; most of them have macroglossia, or an enlargement of the tongue. They may have pink capillary abnormalities on the forehead, creases on the ears, an abdominal wall defect that causes organs to develop partly outside the body and an elevated risk of certain childhood cancers. I first read this list on an officious-looking website, on my phone in the car outside the prenatal-imaging center. The site offered the caveat that not every child exhibited every trait, but my tears short-circuited the screen and it kept jumping back to the list: baby cancer, baby cancer, baby cancer.
For seven months, pregnancy books, and the apps that vie to replace them, had offered me abundant scenarios on which to focus my anxieties. They drilled me on the importance of intentional movement and calculated nutrition, on the dangers of deli meats and cat litter, the risks and benefits of amniocentesis. But now my prenatal helpmeets had little to say. When I typed “birth defect” and “fetal abnormality” into my pregnancy app, it replied: “Please try searching for something else.” The last section of the fourth edition of “What to Expect When You’re Expecting” is titled “The Complicated Pregnancy,” and when I flipped to its end, I found that it did not discuss this syndrome or any other, though it did acknowledge how important it was not to discuss syndromes. “Most women sail through pregnancy and childbirth without any complications,” it says. A reader with a “problem-free pregnancy” was told to “save yourself some unneeded worry” by closing her book now. My pregnancy was the idea from which other pregnant women needed to be spared.
Which left the question of my worry unresolved. I would have to do my own research. After Marc, my husband, drove me home from the ultrasound appointment, I hid under the covers and crept deeper into my phone. I prodded Google to produce images of the syndrome. Pictures of my baby’s possible fates fanned across my screen. Children appeared prone on medical tables, anonymizing black bars covering their eyes. They were perched in hospital beds, posing for crowdsourced appeals for medical funds, their bodies fused with tubes. Their features were sketched in colored pencil or rendered in blunt clip art, arrows prodding at various parts. Through the internet’s totalizing force, these private scenes lurched into public view, where they were exhibited as spectacles. On Reddit, on a board called “Thanks I Hate It,” I found a comment under a picture of a baby born with BWS and a very large tongue: “What could they do? Cut it off? I don’t think that’s a solution.”
On the ultrasound screen, my son’s image was shifting and enigmatic, but the internet pinned him down and sharpened him into cardinal features. It seeded my imagination around who he would be, how he would be perceived and how my own identity as his mother might be reshaped by those forces. I wasn’t exactly sure how to change a diaper. Now I was cramming for an advanced parenting exam.
The urge to consult my phone overpowered me. I could already perceive how it was mediating my relationship with my son, the way it could smudge the lines between privacy and shame, representation and exposure. It might unlock a private community of recognition and solidarity, then lead me to a kind of medical show-and-tell that shaded into exploitation. It might serve me the precise steps for a lifesaving protocol one day and a vaccine-related conspiracy theory the next. But I could not resist its call, because in order to prepare myself for my child’s arrival, I required materials that it, and only it, could provide.
My desperate searches were aimed at a rare complication, but they scratched at an essential itch: to join, share, comment, photograph and snoop on my child before he was even born. The consumer technologies of parenting — its influencers and apps, social platforms and smart gadgets — have proliferated so much in recent years that it’s almost impossible to avoid them. Searching around my son’s disability, and the somewhat violent reactions it could inspire, magnified the conflict that had been waiting for me all along. How much of my son’s life would I share? Where did my identity end and his begin?
An hour after our son was born, Marc sent me a video shot through the porthole of an incubator. I was deadened with anesthesia in a recovery room, and my son was beginning his life as a patient, too. A monthlong analysis of my amniotic fluid had confirmed his BWS before birth. Now a web of sensors uploaded his body’s signals to a beeping monitor. I absorbed his beauty, searched his eyes for clues to his personality. He peeped at his surroundings and stuck out his tongue. When unrolled to its full length, it reached past his little chin.
Over the next few days, some specifics of his medical needs would become apparent. His first cancer tests were negative. His weight was not atypical, though some of his organs were large. His tongue made it difficult to form a seal over the breast or bottle, but he could swallow with effort. And, we were told, his tongue fell back in his throat as he slept, sometimes blocking his airway. 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, Marc and I would acquire a focused mastery over his care. There were dials to turn, special bottle nipples to source, squares of medical tape to press on 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.
Outside the apartment, our situation was less predictable. As I strapped my son to my chest in a carrier and walked him around the city, his very first encounters with strangers were charged. His tongue usually rested outside his mouth, and they sometimes interpreted this as a provocation. People stuck their tongues out at him, then laughed in confusion when he didn’t pull his back in. They yelled after us as we walked away, hooting about the tongue’s size. They approached him in the park or drugstore and said, “Whoa!” or “Is he sick?” When I slipped his passport application under a slot at the post office, a worker gruffly pushed it back, saying that the government would not accept a photograph of a child doing that with his tongue. I buzzed with rage at these encounters, and the helplessness they exposed in me. I felt unfit for the task of representing my son to the world. I needed to work out how to embrace his BWS while preparing for the distress that it could cause.
A pediatrician whom Marc contacted suggested that we consider joining a parent-support group. I searched for them on Facebook and requested access right away. When they unlocked their doors, I slipped inside gratefully. Just the size of the groups — they had thousands of members — steadied me. Parents shared stories, concerns and photos of their children, in sickness and in health. The groups were not straightforwardly reassuring. Often they coursed with uncertainty and pain. But they were comforting in a deeper way, in how they allowed me to redistribute the burdens of my private worries.
The parents in the BWS groups told stories about how their children were perceived. Every ignorant comment could be inscribed into our secret book: the pediatrician at an appointment who said, “She might not go to Harvard”; the grandmother at the aquarium who said, “That baby looks retarded.” Every word felt torpedoed straight at my son. I had encountered the word “retarded” only infrequently since junior high school, but now it seemed to follow me around. Most children with BWS did not have intellectual disabilities, but some other children with large tongues, such as those with Down syndrome, did. The grandmother at the aquarium had said: “Oh, sorry you heard me, but your Down-syndrome baby is cute — you know that.” A big tongue was a minor human variation, but the slur was a blunt reminder of the punishment exacted on anyone suspected of difference.
Though BWS was rare, the world of social influence was vast enough that I found a handful of accounts where parents posted about children who had it. I followed them and watched them act out our new life in the form of a burlesque. I wasn’t interested in broadcasting our family this intentionally, but I also knew that we would be on view whether I liked it or not. I looked to these BWS influencers for clues about the messages I might send, perhaps without quite realizing it. A parent who baked apocalypse-themed treats danced while gesticulating to their daughter’s symptoms in floating text bubbles, performing the blasé normalcy of the condition even as they explained it at length. The father of an extreme-couponing family, who bought items on clearance and resold them on eBay and Amazon, pitched his fourth child’s BWS as a kind of motivational project. The diagnosis, he said in a video titled “Never Give Up!!,” set them “on the path to couponing,” and their son’s extended hospital stay did not stop them. “We bought more stuff,” he wrote. “We couponed harder.”
I followed a Pennsylvania mother who posted on TikTok under the name @largerthanbws, and I watched a video she published under the trending prompt “Show your baby as a newborn vs. now.” It opened with a shot of a big-cheeked newborn baby, sleeping in a lap, sucking on his own big tongue as if it were a natural pacifier, just as my son did. Then — pop! — he became a mop-haired little boy with a toothy smile. In this TikTok trend, the videos with the most dramatic transformations traveled further on the app, and this one had been viewed more than four million times. I picked through the comments that stuck to it like old chewing gum. There were heart emojis, laugh emojis, skull emojis. Some expressed confusion, asking why these images had confronted them in their feeds. One person said: “I’d send it back.”
I saw how for an isolated parent, social media could be a way to connect, even grow an intimate community. But when a video went viral, the audience transformed. A mother could submit her child’s image to the internet’s awareness-raising machine only to watch an audience tear greedily through the pictures, performing repulsion and accusing the parents of seeking clout.
The parents I encountered online differed in their approach to disclosing their children’s diagnoses. Some of them wanted to guard their children’s medical privacy; others wanted to present their whole selves proudly to the world. My mind marched restlessly between their camps. If I revealed nothing, did that mean I was ashamed of my son’s disability? If I emphasized it, did that mean he needed an affirmative defense? I resented the idea that he had to be explained, but I also wanted to smooth his entry into the world — to find the combination of words and images that would secure his easy acceptance.
The first picture of our son ever posted to the internet showed him resting on a lounger, arms above his head, tongue sitting on his bottom lip. Marc tweeted it when he was 1 week old, announcing the birth. The photograph showed our son, as we would later put it, “being a tongue guy,” and I refreshed the thread with apprehension, wondering what a randomized selection of anonymous posters would have to say about my baby. In the stream of congratulations, strangers waded in with advice. His image prompted theories, demanded explanations. It looked as if he could have a tongue tie, a couple of them said. We should investigate getting it snipped. Marc messaged these people and assured them we were on top of all tongue-related matters. One of them deleted her tweet.
Our son’s image was vulnerable, but it was powerful too. I had seen so many clinical photos of kids with BWS, their tongues stretched out as if to prove the extent of their need. On the internet it could seem that our children were defined by the medical system, or else the tabloids. But inside the photo app on my phone, I could create a proud corrective archive. I wondered if, as bell hooks once suggested, the camera could function as “a political instrument,” a way to “resist misrepresentation.” As I photographed my son, I reveled in his beauty and verve. I documented his ingenuity as he learned to drink and eat and comfort himself with his own tongue, placing it against Marc’s shoulder and sucking on his shirt until his eyelids dropped and his breath slowed. I admired how the tongue emerged from his mouth, a pink half-moon, as he concentrated on a task, and how it pulsed softly as he slept.
But as I scrolled back through my Instagram feed later, I noticed something: First his tongue was inside his mouth, then outside it. Inside, then out. In many of the pictures I shot, his tongue was long and thick, protruding to his chin, but these never made it to the grid. In the ones I shared, his tongue usually rested between his lips, not quite in and not quite out.
With my vacillating posts, I seemed to be saying: He is normal, but he is different, but mostly normal — only a little different.
When our son was 3 months old, Marc and I drove him to Pennsylvania for two days of appointments at the Children’s Hospital of Philadelphia. Over the next few years, he would see many experts there. The idea of a hospital for children once scared me, but now it brought relief. The facility’s vast atrium suggested the scale of competent care that would reveal itself to us inside. He whimpered through an ultrasound examination of his round belly, a re-enactment in miniature of my own exams during pregnancy. It was a punishing day of appointments, and I began to understand why a parent might fashion an identity centered on the hospital, devoting herself to investigating its complexities.
On that first visit, I was asked whether I wanted to enroll him in a BWS research study and consent to the collection of his information and genetic material. Marc and I agreed that we ought to support the research. But it felt eerie, signing on his behalf, as if his body were mine. A few years later, the hospital reached out with a new research request: They wanted to study me. They sent me an online survey seeking to understand the psychological effects of acting as a caregiver to a child with BWS, and as I completed it, I was surprised to find its questions surfaced thoughts and reactions I had experienced as intensely personal. The survey asked me about my fear, horror, anger, guilt and shame, but also about my resilience, my shifting priorities, my faith in other human beings. It was composed by a young researcher at the hospital, Rachel Ottman, as a part of her doctoral dissertation. Ottman had BWS herself, and I had seen her weigh in occasionally on the Facebook groups, waving invitingly at distressed parents and generously detailing her own experience.
Later, I called Ottman and asked what had made her interested in the experiences of caregivers. She told me that at first, she was not interested in us. She had hoped to study children directly, but the most intense medical interventions related to the syndrome are concentrated in the first years of life. By the time the children could speak for themselves, they would not remember. So she studied their parents instead, investigating how their psychological responses could come to affect their kids. When Ottman was a child, she and her mother experienced “an intertwining between their identities,” she said. “That can happen when a BWS child has a strong medical advocate in their family, which is needed.” As she became older, her medical needs lessened significantly. “For a caregiver,” she said, “I can imagine it can feel hard to let go.”
Engaging with other BWS parents gave me access to representations of children like my son. But social media algorithms misread my interest as a broader enthusiasm for child medical content. Soon my feeds coursed with unrelenting pediatric dramas. My phone became a virtual hospital ward, staffed with parents proffering updates on their “rare genetic kid” or their “special-needs spice.” I had just become a mother, but already I had been assigned a subidentity: the “medical mom.”
The medical mom is a prominent online archetype. She is a mother who executes at the highest levels. Simultaneously a long-suffering caretaker and a fearless combatant, she meticulously manages her child’s complex medical needs, documenting her family’s challenges and fusing her identity with her child’s condition. Her central struggle is fighting the medical establishment to get it to accept her unique form of expertise and reward her family with adequate care. Through grief, rage and financial insecurity, she endures. Instagram and TikTok surface scores of women who appointed themselves representatives of the group, each with their own affective style.
The medical mom posts images of little IV ports and feeding tubes set to repeating choruses from Sia songs. Or she shares imageless earth-toned squares with somber quotations like: “My baby was born fighting for their life.” You can find her soliloquizing about her child’s struggle from the dark edge of a hospital bed, a front-facing phone camera illuminating her fatigued expression; or weeping in front of a dashcam in a parked S.U.V., her bewildered child just out of frame. She identifies as a “hospital mom,” a “rare mom” or a “disability mom.” She quilts together a community through hashtags like #healthanxiety, #disabilitylife, #NICUlife, #specialneedsreallife, #tubefed, #griefwarrior. The biggest medical moms have steroidal followings — in the hundreds of thousands, in the millions — and their children occasionally become famous, their medical journeys aggregated by Us Weekly and E! Online.
I circled this new identity at an alarmed distance. I could not claim it, even if I wanted to. Marc was the one who was on top of all the medical stuff. He made the appointments, monitored the online portal, ordered the nasal cannulas, ordered the smaller nasal cannulas when the first cannulas were too large, reminded me of the hospital staffers’ names, saved their phone numbers, found specialists, found alternate specialists to those specialists. I read an inspirational quote online that said, “Medical moms are the equivalent of Batman, Captain America and the Incredible Hulk, all rolled into one, with a side of Mary Poppins.” But I was just the equivalent of me, rolled into a hospital waiting room. Marc was good at talking to the doctors, but he would sometimes ask me to raise a sensitive issue with them: “They listen more when it comes from the mom,” he’d say. It didn’t matter who I was or what I did — I was perceived as having supreme authority over the body of my child.
As my son grew, a backlash mounted against the practice of sharing images of children online, and some critiques called out medical moms for special censure. In a 2023 article for The Washington Post, Fortesa Latifi questioned the costs of growing up with one’s intimate medical events streamed for an audience — every ambulance ride, every intubation. Adults with disabilities described it as a dual betrayal: a child’s autonomy revoked first by the medical system, then by her own parents. The camera’s presence in the hospital room converted treatment into a monetizable scene — one that was sometimes leveraged to cover the child’s medical bills — as if the quality of care were contingent on the strength of the performance.
But I sympathized with these parents, and with how the failures of the medical system collided with the incentives of social media platforms. I wondered if some of them posted out of a magical belief in their own attention — that if they witnessed their child’s hardships closely enough, they could neutralize them. “I really wanted to protect her by sharing online so that people could understand her story before they met her,” one medical mom with millions of TikTok followers told The Washington Post. “And then she wouldn’t be faced with so many questions.”
I never posted images of my son in medical settings. And though his oxygen machine was a daily presence, and the nasal cannula a part of his uniform, the online image of a baby with a breathing tube stoked curiosities I wasn’t prepared to satisfy. And yet I was familiar with the currency of his pain. When I spoke the words “children’s hospital” in conversations with colleagues or friends, sympathy rushed my way. The internet medical moms poked at the raw skin of my new identity. They amplified my most anxious and vain impulses. How badly I wanted my own experience understood. How selfishly I wanted my own sacrifice affirmed. Whenever we visited the hospital, and I comforted my child through its confounding routines, a thought lurked in the back of my mind, that if I just posted a picture of him there, everybody would have to be very nice to me.
One morning, when my son was 2, I turned on the television, selected “Dumbo” on Disney+ and cleaned the kitchen while he watched from the couch a few feet away. I remembered only one thing about the movie: The elephant learns to fly. I listened as storks cruised down from the sky, delivering baby animals to the various enclosures of a traveling circus. One bird dropped a baby elephant in front of a new mother, and she named him Jumbo Jr.
I glanced up and saw a line of lady elephants staring at the baby with stunned amusement. Released from the stork’s beak sack, Jumbo’s ears flopped out, revealing their extra-large size. “Just look at those, those E-A-R-S,” one elephant said. “Oh, these! Aren’t they funny?” said another, grabbing at the baby with her trunk. Jumbo’s mother whipped her own trunk around and slapped her in the face. The lady elephants gasped, then resumed their nasty conversation.
What did I do? Tell me, did I say anything?
A perfectly harmless remark.
I said they’re funny-looking — they are funny!
They certainly are.
After all, who cares about her precious little Jumbo?
Jumbo? You mean, Dumbo.
The elephants laughed. My son gazed neutrally at the screen. My hand reached for the remote to turn it off. Then something interesting happened: Jumbo’s mother scooped up her baby with her trunk and wrapped him in the fabric of his own ears. They smiled together as she rocked him to sleep.
Once the cruelty of the elephants would have struck me as old-fashioned or melodramatic, but now I recognized the realism of the scene. I was always caught off guard by how difficult it seemed for people to say nothing. The comments just spilled from their mouths. Not knowing what to do, I usually kept mine shut. Now I wondered if I should have slapped somebody with my trunk.
On my phone, I read about how “Dumbo” recycled damaging tropes about disabled people, casting the big-eared elephant as a victim, a freak and a “supercrip” — Eli Clare’s word for a stereotypical character who is made to overcome his disability through a hyperindividualistic drive. It infantilized disability, removing it from its human context and planting it in a cute baby animal instead. But the movie also had an alternate reading, one expressed in an essay by Victoria Lucas, a woman born with a rare genetic condition called cherubism that produces an enlarged lower face. When she watched “Dumbo” at age 9, she saw a hero with an “extremely enlarged facial feature,” she wrote. “For the first time, I’d found someone I could relate to. I didn’t realize it then, but I had reclaimed him as a disabled role model.”
I hated that Jumbo Jr. had to take flight for the circus to accept him, but I was beginning to understand that “Dumbo” might play differently for my son than it did for me. My impulse to zap away a confrontation with cultural stereotypes was a power move that would not work for long. As my son watched the little elephant, I watched the character’s mother. I followed her story closely, tracing the boundaries of her role. After she named her baby, she did not speak another line. Her child’s bullies multiplied. She raged against them until she was subdued and imprisoned in a cage. Only when Jumbo Jr. discovered that he could use his big ears to fly was he able to charm the circus, earn the world’s respect and free his mother.
“Dumbo” taught me that a good mother wielded righteous anger on her child’s behalf — but also that this anger was dangerous, and it could cause problems for my son. I could become one more burden he was expected to resolve.
On the internet, it could seem that my son was me, that I was him. But this was not the case. When Marc and I took him to the hospital for his sleep tests, it was his body fixed with sensors and wrapped in gauze. At his quarterly ultrasound scans, it was his shirt pulled up, his stomach bared, his organs on view. Later, when he was nearly 3 and his surgeon finally recommended a tongue-reduction operation, it would be his body frozen with anesthesia, his tongue cut down, his tissue preserved in some repository. It would be his mind awaking to a pain and confusion that I could not foresee and that medicine could not easily resolve. But lasting memories of these events would persist only with me. Whether or not I posted about them online, he would have to integrate them into his sense of self, and so would I.
Photographing our children is a technique for seizing control over the uncontrollable. Our kids grow up and crawl out of our grip. When they fall asleep, we review their static images in the palms of our hands. Perhaps the “medical parents” we see online feel that they have even less control of their children and seek to fulfill a greater need for self-assurance, but what they are doing is a variation on normal — or, at least, a practice that’s become normalized. Marc and I spent many hours staging a kind of digital puppet show between ourselves, ventriloquizing our baby’s thoughts. We broadcast this mirage far beyond his awareness, to people he did not know and would never meet, on platforms he did not understand.
Now my son is 4. He goes to school and comes home singing viral YouTube songs. He knows what Netflix is. I recently watched him lovingly trace the smiling arrow in the logo that appears on Amazon Prime Video. I rarely post photographs of him anymore, but soon enough he will know the various ways that I have framed him for public consumption, how I’ve photographed him and what I’ve written. I think I’m nervous for him to learn about Instagram — not just because of how it might influence him to see himself, but because of how it will inform his view of me.
Amanda Hess is a critic at large for the Culture section of The Times, covering the intersection of internet and pop culture.
The post My Son Has a Rare Syndrome. So I Turned to the Internet. appeared first on New York Times.
