My preoccupation with sick kids on Instagram

Sketch of premature baby drinking bottle

 

By Justine Feron
@justineferon

A year ago, after four months of bed rest, two weeks in NYU’s antenatal unit, and one emergency c-section, my son Finnegan was born seven weeks early.

In the aftermath of his birth, when I was still getting morphine through an epidural catheter, still wearing the disposable underwear that the nurses jokingly called “Victoria’s Secrets,” and still able to touch him only through the portholes of his hospital incubator, I’d sit watching my son all day long. And when I couldn’t watch any longer, when the sight of his dislocated limbs and machine-aided breathing became too much, I’d turn to my phone for distraction.

In those early days, I joined a handful of Facebook groups with names such as “Moms of Preemies” and “NICU Moms” (Dads don’t exist in this world, apparently). There, I read with raw horror and fascination about babies who’d “gotten their wings,” the preferred parlance for talking about infant death on social media. The fact these babies had been sicker than my son for longer than my son was cold comfort to me. All I could see, looking at photos of babies in their last moments, were the similarities. The breathing tubes. The ventilators. The curving nest of pillows cradling tiny bodies. My son was in the same place that they had been, in the same hospital rooms with the same beeps and alarms and whooshing oxygen sounds. And those babies hadn’t gone home.

It made me think, as I stroked Finnegan’s skin with one hand and scrolled with the other, of those law-school movies, where some professor about to skewer students using the Socratic method would say: “Turn to your left. Now turn to your right. At the end of the year, only one of you will still be here.” I looked at the babies to my left and to my right. A week from now, or a month, or a year, would all of them still be here? Would my son?

My worst fears, it turned out, were unfounded. My son got better. It took two months on oxygen for him to breathe on his own and more than a dozen casts to correct dislocations in his legs, but he got better. And so I left those Facebook groups.

Yet I couldn’t shake my fixation with the hardships of other babies. This morphing preoccupation, which began with BabyCenter forums and subreddits during my high-risk pregnancy, now moved to a different social medium: Instagram. There, sandwiched between shoppable brand posts and photos of #thecookies, are pictures of babies I’ve never met before, accompanied by parent-penned captions detailing their children’s conditions:

“Today you are 14 months old,” reads one example, from Arizona Mom Kassady Bingham’s Instagram story. “Today marks 8 weeks in the hospital. Today marks 168 days spent in the hospital in the past year.”

The ‘you’ in this case is her son Milo, who has infant leukemia and also his own line of ‘More Love For Milo’ merch. I’m not sure which baby I became fixated on first. If it was Milo or Indy, who also has recurring leukemia, or Finley, who has spent most of his year-long life enduring one stomach surgery after another. Each follow leads to another leads to another—an endless loop of transplants and dialysis and g-tubes and blood transfusions and outpourings of love and support.

And I keep looking with avid interest, hoping that when my son grabs my phone from my hand he won’t accidentally hit the laughing emoji on a heart-wrenching Insta-story.

I’m not the only one who’s interested. 87,000 people track Milo’s progress via his Mom’s Instagram account, 111,000 people follow Indy’s treatments, and 175,000 are cheering on Finley. Illness influencing has become its own cottage industry, a strange sort of internet fame that its subjects aren’t even aware of, and that their parents would surely trade away in a heartbeat to have a healthy kid.

Over the past year, as my own son has grown healthier and healthier—shedding his casts and ditching his nebulizer and becoming all but indistinguishable from kids who didn’t spend the first months of their lives in the hospital—many of the subjects of my Instagram ardor have gotten sicker and sicker. It’s terrible to watch these babies crying and writhing. It’s even worse when they’re so beset by breathing tubes, blood pressure cuffs, and bandages that they can’t cry or writhe at all.

So why do I watch? This is the question my husband sometimes asks me, as he catches me deeply absorbed in some stranger’s child’s biopsy results. Why am I so drawn to the sad stories of others? Why do I wallow in second-hand despair when our own happiness has been so hard won?

Maybe it’s schadenfreude, some pleasure derived from the knowledge that others have it so much worse than I do. Maybe I’m drawn to the abyss—the bottomless pit of could-have-beens and might-still-bes and but-for-the-grace-of-Gods. Or maybe watching is a form of penance for the guilt of being one of the lucky ones who got to take her baby home. But mostly, I think it’s fear—the fear that if I let myself fully inhabit the happiness of having a healthy kid that he’ll be taken from me.

Back when I was pregnant, I remember recounting my woes to a friend: the routine scan that ended in tears, the amniotic fluid that drained away months too soon, and the doctor who suggested termination might be best. She paused for a long time and then said, “Well, at least you know what you’re in for now.”

I blanched at the time—what a glib reaction!—but later I began to agree with her. In all things in life, we suffer most not when our worlds are at their worst, but when the gap between what we expect and what we get is biggest. The greatest pain I experienced wasn’t when my son was born sick—I expected that—but the moment when, some four months earlier, I’d discovered that my ‘normal’ pregnancy was in fact endangered. So maybe it’s only by staying connected to that sadness, attuned to the possibility that tragedy can strike at any time, that you can protect yourself from it.

I explained it to my husband like this: watching Finnegan struggle to survive built up an armor, and immersing myself in sad stories on Instagram helps me maintain it.

But, a few weeks ago, the sudden death of YouTuber Brittani Boren’s infant son Crew made me question my theory that consuming a steady diet of sad social posts could inoculate someone against suffering.

As I flicked back and forth between two photos Boren posted on Instagram, one before her son’s death and one after, one celebratory, the other crushing, my perspective shifted. Nobody’s son dies because they had the audacity to be optimistic. Boren’s loss wouldn’t have been lessened if it had come on the heels of a less jubilant post, or if she’d spent her life on high-alert for something horrible to happen. Horrible things just happen sometimes.

I still cross my fingers for Milo, think good thoughts for Indy, and root for Finley, but lately I’ve been trying to do it out of support rather than superstition. It’s not easy. The impulse I feel to treat social media voyeurism as an insurance policy remains as strong as my need to tether every piece of furniture in my apartment to the wall or check my son’s breathing at night. I have to actively remind myself that there’s a difference between the things that really make us safe and the things that just make us feel that way.

My son got better. And someday, I’m pretty sure I will too.

Justine lives in New York with her husband and son, where she works in advertising and writes a blog called Read and Roam. She’s currently working on a memoir about motherhood.

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