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You Might Relate to This Mom's Viral Tweets About Lifetime Limits If Your Child Is Sick


In the two years since Ethan Chandra’s birth, he’s had four open heart surgeries and a pacemaker installed. His most recent surgery, which his mother Ali Chandra shared as part of a viral tweet storm, cost $231,115.

Thanks to the family’s insurance plan, Ethan’s procedure cost $500. However, current proposed changes to health care policy, which could place lifetime limits on how much insurance companies would spend per person or condition, could make it difficult for the Chandras and families in similar situations to pay for long-term critical care services. Advocating for her son, Chandra shared her family’s story on Friday in a series of tweets.

Ethan has heterotaxy syndrome and was born with nine heart defects. “He takes 5 different prescription medications multiple times a day. All of this adds up. None of this would be possible without insurance,” Chandra tweeted.

With one surgery costing around a quarter of a million dollars, Chandra pointed out that with four surgeries under Ethan’s belt and frequent appointments with specialists, he long passed the million dollar lifetime limit that used to exist. “He blew past the million dollar mark long ago; I haven’t even mentioned the ER trips for sepsis workups every time his temp goes above 100.4,” she wrote.

Without the Affordable Care Act, Chandra would not be able to pay for Ethan’s care, she told BuzzFeed News. “Because of Obamacare, we do pay high premiums, but that money is going into a pool that’s allowing kids like Ethan to receive coverage for almost all of his expenses, and we are so grateful for that.”

After tweeting Ethan’s story, Chandra made an impassioned plea to those supporting the Republican health care plan, stating those who support a lifetime cap on benefits should tell her son, “Sorry, you’re not worth keeping alive anymore. You’re just too expensive.”

Chandra’s tweets began raking in retweets and favorites within hours of sharing. The most popular tweet in the thread, a photo of her son and his surgical scars, was retweeted more than 27,000 times. Since going viral, Chandra has shared more of their family’s story, the road to Ethan’s diagnosis and their switch from Medicaid to private insurance. Chandra also addressed some of the negative comments people have sent her.

At the end of the day, Chandra said she just wants people to stand and fight to help keep coverage for kids like Ethan.

You can read Chandra’s full Twitter thread here