Why This Mom Shared Her Son's Heart Surgery Bill On Twitter

As we await a Senate vote on the GOP’s revised health care bill, which was revealed this past Thursday, people across the country are concerned about what this could mean for their health care costs. One of those people is Ali Chandra, a mom who tweeted her son’s surgery costs and showed exactly who this new bill could potentially hurt.

Chandra, a registered nurse who lives in New Jersey, took to Twitter to talk about her three-year-old son Ethan. Chandra explained that Ethan was born with heterotaxy syndrome. “Heterotaxy syndrome literally means different arrangement,” she said in an interview with CNN. It’s a rare birth defect in which "any of the internal organs can be malformed, missing, multiplied, or misplaced." Because of this, Ethan has been in and out of the hospital since he was born, with his first open-heart surgery taking place when he was just six days old.

A recent hospital bill spurred Chandra to share her and Ethan’s story. “It seems fitting that, with the #TrumpCare debate raging, I got this bill in the mail today from Ethan's most recent open heart surgery,” Chandra tweeted. In the thread of tweets, Chandra explained how insurance covers much of Ethan’s medical bills, making his live-saving care affordable for their family. This most recent bill for ten hours in the operating room and two weeks in post-surgery care would have cost $231,115. With insurance, Chandra’s bill was $500.

The GOP’s health care bill has proposed bringing back “lifetime caps” on health care. These caps allow insurance companies to place limits on the amount of dollars patients could use while enrolled in a health care plan. For example, an insurance provider could cap coverage at $1 million, making the patient personally responsible for the rest of their health care costs so long as they were enrolled in that health care plan. The Obama administration banned lifetime caps when the Affordable Care Act was passed. However, they could be reinstated, should this newly proposed plan pass in the Senate.

Ethan’s medical bills surpassed $1 million long before his third birthday. “A lifetime cap on benefits is the same as saying, ‘Sorry, you're not worth keeping alive anymore. You're just too expensive,’” Chandra tweeted. Talking about lives in terms of cost efficiency prompted Chandra to speak out. “It seems like our kids are being reduced to a line in a budget," she told CNN. "No one seems to realize there are real people behind it."

Chandra’s story has since been shared over 80,000 times on Twitter.

Conversations on health care can be complicated, and sometimes rather cold. However, the fact remains: There are lives that will be affected by this health care bill. We need to keep putting faces to the numbers, humanizing the real people who rely on affordable health care. It’s perhaps why people will readily donate to a GoFundMe for someone's medical expenses, but conversations on single-payer health care remain contentious. It is easier to care about a cause when you remember you’re talking about real people and not just concepts.

You can find more information about heterotaxy syndrome and how to help here. But first and foremost, you need to contact your representatives about health care. If you would be willing to send Ethan financial support through crowdfunding, you should be equally willing to take five minutes to call your congresspeople and let them know where their constituents stand on health care. If you need one more reason to show your support for the ACA, here’s what Chandra told CNN:

“To see him go from a kid who lost his breath after going up a few steps to a kid who can hike by myself, be able to keep up with his sister and his friend, that is what that medical bill gave us and that is priceless to me."

Read Ali Chandra's full thread on Ethan's story on Twitter @aliranger29.