Mother recounts ugly backlash after sharing son’s Boston Children’s Hospital bill

ethan
Ethan. –Alison Chandra via Twitter

Alison Chandra says that, at first, the responses were entirely supportive. However, in a first-person essay for Vox, she said they “became increasingly personal and increasingly violent.”

Chandra, a New Jersey mother whose son Ethan was being treated at Boston Children’s Hospital for a rare genetic disorder, had tweeted a photo of his hospital bill in late June. The bill revealed how the family’s insurance saved them from the staggering medical costs of Ethan’s treatment. It quickly went viral.

Amid congressional Republicans’ efforts to pass a health care bill, Chandra challenged readers in a series of tweets to “look my son in the eyes and tell him … you’re just not worth it anymore.”

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“The days to come would introduce me to the darkness lurking in the savage corners of the internet, and to the promise it holds for families like mine who so desperately need to find community,” the former nurse wrote Friday for Vox.

Increasingly, Chandra said ugly messages began to seep into her replies.

I was offered a .22 bullet, although I’m still not sure whom he meant it for, me or my child. One man took me up on the challenge I’d posed in the thread and declared that my son just wasn’t worth keeping alive anymore. There was even a percentage of the comments dedicated to the belief that I was a foreigner or, worse, a terrorist, which is when I started asking news outlets to use my full name: Alison, not Ali, since people seemed unable to believe that I was, in fact, a white chick from New Jersey.

The worst were the ones who attacked on the genetic front. Heterotaxy has no known cause, but in our case it was due to a genetic glitch, a previously unknown fault in the code of my own humanity that I passed down to my son. I don’t think I’ll ever come to terms with the fact that it was me who slipped the poison into his DNA, with knowing that his children (if he ever has them) will stand in front of this same 50-50 firing squad. It’s been my own private heartbreak. Now strangers were tearing barely healed scabs off those old wounds and I was running out of hands to stanch the bleeding.

Chandra said she quickly gave up trying to reason with “some of the haters.”

“No one was listening,” she wrote. “No one seemed willing to stop shouting long enough to realize that there was a real person on the other side of the screen.”

However, Chandra hardly regrets posting Ethan’s medical bill. In fact, she says the attention it received — both good and bad — ultimately resulted in something that made it all worth it: Another mother was able to get a proper diagnosis of her son’s heterotoxy after seeing Chandra’s posts.

“It didn’t matter that there were people fighting with each other and spouting conspiracy theories and competing to say the worst things they could fit into 140 characters in my Twitter mentions,” she wrote. “There was a mama out there whose life would never be the same.”

The current version of the Republican health care bill is estimated to reduce the number of insured people by 22 million — mostly through cuts to Medicaid — and would roll back a number of the Affordable Care Act’s insurance standards. In her original thread of tweets, Chandra said Ethan’s prenatal care and early treatment were paid for through Medicaid.

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Despite all the online animosity, Chandra wrote she hopes her posts will bring people together to realize “tragedy does not discriminate” and “aim our passion away from strangers on the internet and toward the people who are responsible for the laws that affect us all.”

Read her full essay over at Vox.