As a mom of a child with health issues, I fear when Facebook goes down. As a tech founder, I wish I didn’t care so much.

Sehreen Noor Ali
  • I use Facebook to connect with other parents who have children with health issues.
  • As a tech founder, I’m fully aware of how Facebook mines my data.
  • But I’m not planning on quitting anytime soon.

My young daughter has been hospitalized for over a month. Our room is a marriage between a dorm and an ops center – it’s full of beeping machines, chargers, a roommate, and a messy bed that needs constant changing. I’m living in constant fight-or-flight.

If I use my phone, it’s because I have pressing questions about her care to look up.

That’s why Facebook’s latest outage wasn’t a “mental break.” It was a moment of aggravation where I was blocked from my go-to resource: other parents of kids like mine.

My daughter is dealing with medical symptoms related to a major surgery she had in August. On October 4, I needed information about what type of surgery to pursue for her gastric tube insertion and went to Facebook to get help from one of the groups related to g-tubes.

Waxing poetic about Facebook’s demise has become cool among tech pundits. But for parents of kids with health issues, there’s nothing disposable about the platform.

Facebook groups helped me find a diagnosis for my daughter

We are part of highly engaged communities where families of kids on similar health journeys give and get information. These insights are rooted in personal experiences.

Parents act as a GPS, helping their peers make more informed next steps. This type of crowdsourced advice is needed when you’re a parent navigating doctors, educators, and therapists.

For example, in a 30,000-member Facebook group on speech delays that I’m part of, parents have helped others navigate to a more accurate diagnosis, overcome insurance barriers, and understand which symptoms to ignore and which to escalate to a physician.

My daughter had been waking up four times a night with a cough that didn’t concern doctors. In a Facebook group for kids with vocal-cord dysfunction, a few parents urged me to ask for a specific type of scope that was more comprehensive than what I’d been offered. It unlocked a diagnosis after two long years.

These groups are very active. I moderate one on children’s development – we regularly receive 40 requests to join and a dozen posts a day.

Don’t confuse these groups with pseudoscience ones that claim celery juice is the cure for hypothyroidism. These communities of parents are not peddling a modality of care; they’re an information exchange.

When people say Facebook is dead, they’re revealing their own informational privilege. Parents like me don’t have anywhere else to go, so we’re creating our own solutions on Facebook.

I’m fully aware of what Facebook is getting from me

I know Facebook mines my data. And as a tech founder, I’m doubly aware of its pitfalls. It has likely already started to analyze my child based on the words and questions I drop across the 20 groups I’m in, creating a profile of her before she’s even old enough to sign up for the app.

I do silly things – I make sure I don’t mention her birthday, and I use her initials instead of her real name. But I know I’m just fooling myself that her information is safe.

To add insult to injury, Facebook groups are weak at surfacing the most credible information. The search functionality is not ideal for health-based queries. Trolling, false data, and controversy are everywhere. To maximize the utility of these chronic-health-issue groups, you have to employ your own vetting, which is frustrating and time-consuming.

One friend is on Facebook only to stay connected to her daughter’s condition group; otherwise she would’ve been long gone. In an achievement-obsessed parenting culture, Facebook can actually be a trigger for moms of kids facing challenges – and yet both of us agreed we’re not deleting the app anytime soon.

Sehreen Noor Ali is a New York City-based founder of Sleuth, a children’s health startup.