AWARENESS OR EXPLOITATION?

Medical moms’ online sharing raises questions about whether it harms children more than it helps

When Bella was born in 2013, she didn’t leave the hospital for the first two years of her life because of a combination of a rare form of dwarfism, bowel disease and autoimmune disease. Kyla Thomson, Bella’s mom, started sharing online as a way to update her family members.

As Bella grew and changed, so did the Internet. Kyla moved her updates from blogs to Facebook to Instagram, eventually landing on TikTok, where she has amassed 5.7 million followers. Fans watch Bella and Kyla dance and joke and follow Bella’s hospital stays, ambulance rides and nightly intravenous medication rituals.

Thomson’s account is one of the biggest in the world of #medicalmoms, a corner of TikTok where mothers of disabled and chronically ill children share their parenthood journeys. Among the posted videos: a child with cystic fibrosis struggling to breathe, a premature baby getting their tracheotomy changed, and a mother dancing to a trending song while words pop up explaining her child’s disability.

The parents behind these accounts say they’re sharing the content to raise awareness about the realities of disability, fight social stigma and foster a community for others in their situation. But as scrutiny of influencer parents sharpens, some creators are walking back old decisions to share their kids’ faces and deleting old videos. Advocates are introducing legislation to protect influencer kids and pushing against the monetization of child-focused content. And

As scrutiny of influencer parents sharpens, some creators are walking back old decisions to share their kids’ faces and deleting old videos.

critics say issues of child privacy, consent and autonomy are especially pronounced when publicizing medical conditions.

Thomson, 40, and Bella, 9, live in Canada, where they don’t have access to the TikTok creator fund, which pays creators for views. Instead, Thomson monetizes her account by posting branded partnerships (such as with the National Hockey League) and through merchandise that features the BElla BRAVE logo. Thomson said Bella is now at the age where they discuss what they’re posting on social media and what will come from branded posts. (Canada, like the United States, doesn’t have laws protecting the earnings of child influencers.)

Although Thomson and Bella are famous on TikTok for their lighthearted takes on trends and their dance moves, interspersed are more serious videos like one detailing a canceled bowel transplant. Bella is shown with a look of joy on her face, with Thomson grinning in the background. In the next video, Thomson talks to Bella about the canceled transplant, with Bella saying the plane ride to the hospital made her feel tired and she wasn’t worried about surgery at all because “it’s just like every other surgery I’ve ever had — sleeping medicine [then] nothing” and pretending to fall asleep.

In sharing Bella’s story, Thomson said she hopes to raise awareness about Bella’s diseases while protecting her daughter in the real world. “I really wanted to protect her by sharing online so that people could understand her story before they met her,” Thomson said. Thomson doesn’t worry that Bella will get to the age where she resents her medical history being detailed online. “[People] are going to look at that and be like ‘Wow, you’re so tough. You’ve conquered some mountains.’ ”

Where some parents see empowerment in sharing, some creators see exploitation. Cam, a chronically ill TikTok creator who goes by softscorpio, knows what it’s like for medical information to be posted online by a parent. Cam, who spoke on the condition she be identified by her first name to guard her privacy, said her mother used to post constantly to her thousands of Facebook followers, including photos of Cam in a neck brace immediately following a car accident or descriptions of her preparation for an upcoming colonoscopy — detailed posts that Cam thinks were invasive and disturbing. Cam testified in February in support of a Washington state bill to grant more protections to children of influencers.

Part of parents’ disconnect, Cam thinks, might be because able-bodied parents aren’t living the experience of a disabled or chronically ill person, but witnessing it. And although she understands the need to raise awareness, she balks at the idea that a child should be used for it.

“I don’t feel as though you need to be posting your child in their most vulnerable moments,” she said. Instead, parents could share facts about the symptoms and prevalence of a disease, leaving photos and videos of their children out of it.

Katriel Nopoulos, a 34year-old disabled content creator with 118,000 TikTok followers who communicated with sign language interpreted by their partner, said the awareness that may come from these TikTok accounts is not worth the price: privacy of the disabled child.

The popularity of these videos reminds Nopoulos of the history of 19th-century freak shows, when ablebodied people paid to gape at disabled people pushed into making a living as circus acts.

A better tactic, Nopoulos said, would be to share disabled creators’ content. “Every time a parent has that impulse to post about their child’s disability, I would ask them to go find a disabled creator with that disability and amplify their voice instead,” they said. “Focus on advocacy more than awareness.”

Caitlin Nichols shares videos of her 5-year-old triplet daughters to 792,000 TikTok followers. Nichols posts from the hospital at 2:30 in the morning, where she holds one of her daughters and talks about missing the other two. She shares videos of the girls practicing gymnastics and photos of when they were born prematurely. One video features her daughter sleeping in a hospital bed with a breathing mask on, overlaid with the words “I am so tired.”

Sharing her daughters’ medical journeys, Nichols said, is her way of making sure they don’t feel less than. “I want them to stand strong and be proud of who they are,” she said. “So I will never shy away, minimize, or hide anything they are dealing with. I would hope when they’re older, they understand why I shared this, but it’s not their job to understand.”

If her daughters don’t see her sharing the way she does — as a way of taking back the narrative of disability — Nichols said she will delete anything they want deleted.

Through her account, Nichols has formed a community of other parents of disabled and chronically ill children. By sharing her daughters’ journeys, she said her hope is to create a world that is less discriminatory toward disabled people and more understanding of the diseases that can complicate a life.

Annalise Caron, a clinical psychologist who runs an initiative dedicated to parenting, understands the instinct parents have to seek community.

“It can be a very lonely experience to be a parent of a chronically ill child,” Caron said. “Parents find support online.”

But two questions arise, Caron said, that are worth asking before sharing photos or videos of your child. First: What is the goal in sharing this? And second: How does my child feel now and how will they feel in the future?

“We could ask someone when they’re 6 or 8, ‘Do you mind if I talk about your personal medical information?’ They might say, sure,” Caron said. “But maybe when they’re 16 and they find out their parents have a huge following off them, they may not be as comfortable with that.” Even if sharing a child’s experience helps build community, Caron said, the child’s privacy and personal feelings should always be considered first.

But parents will keep sharing — except, they say, when their kids ask them not to. Thomson said she remembers watching Bella dance once and telling her daughter how beautiful she is. Then she asked: can I share this? “And she’s in the moment dancing and she [said] no, not right now. I was like, OK.”

“We could ask someone when they’re 6 or 8, ‘Do you mind if I talk about your personal medical information?’ They might say, sure. But maybe when they’re 16 and they find out their parents have a huge following off them, they may not be as comfortable with that.” Annalise Caron • clinical psychologist