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This Mom Shared Her Son's Hospital Bills In Response To The Republicans' Health Care Plans

"Look my son in the eyes and tell him that he's fought so hard to be here but sorry, you're just not worth it anymore."

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This is Ethan Chandra, a 2-year-old boy in New Jersey, who was born with a rare condition called heterotaxy syndrome. The birth defect affects a baby when it's developing and can lead to any of the internal organs being malformed, misplaced, multiplied, or missing.

Ali Chandra

In Ethan's case, his heart is malformed; his stomach is misplaced on the right side; and his liver, gallbladder, and heart are all down the middle. He also has around five spleens and two left lungs, his mother Ali Chandra told BuzzFeed News on Saturday.

Ethan, who will turn three on July 1, has already had four open chest surgeries, three of which required him to go on bypass, and another surgery to place a permanent pacemaker, Chandra said.

In total, he's had to visit the operating room eight times so far in his short life.

On Friday, Ethan's mom got a lengthy bill for his most recent open heart surgery —but thanks to their insurance they owed the hospital just $500. Without insurance, they would have owed well over $200,000.

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Chandra tweeted a picture of the bill and in an emotional Twitter thread, which has since gone viral, she spoke about the devastating impact the Republicans' proposed health care bills could have on Ethan's medical expenses.

It seems fitting that, with the #TrumpCare debate raging, I got this bill in the mail today from Ethan's most recen… https://t.co/9t82U0ZzN6

In a series of tweets, Chandra described how insurance helped them cover a broad range of services that Ethan needed beyond surgical hospital stays.

"We're hopeful that going forwards he'll need fewer and smaller surgeries, but this was not the last time they'll open his chest," Chandra said in one tweet.

The surgeon who operated on Ethan's heart was based several states away, Chandra said, adding that her son also regularly needed to see a local pediatrician and an immunologist, as well as a cardiologist and electrophysiologist for his pacemaker,

Ethan also takes five different prescription medications multiple times a day and has frequent visits to the Emergency Room, she said.

Chandra told BuzzFeed News that without the Affordable Care Act, "there is no way we could afford this."

"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," she said.

If New Jersey decided to reinstate lifetime caps — which the Senate's health care draft bill gives states the option to do — Ethan's coverage would become unaffordable.

And I want you to go look at that number again. Nearly a quarter million dollars for one surgery. Reinstate lifetime caps and he's out.

As the Senate health care bill stands, Chandra said her family would be impacted by the stripping of essential health benefits coverage and allowing lifetime caps to be reinstated.

ObamaCare stops insurers from setting yearly or lifetime dollar limits on essential benefits. While the Senate's health care bill keeps this rule, it also gives states the option to eliminate it.

"If this bill is passed, it will depend on how NJ government reacts in terms of safeguarding families like ours," Chandra said. "Worst case scenario, Ethan will lose coverage or his coverage will become unaffordable (which is the same thing)."

"If lifetime caps are reinstated, we simply won't be able to afford the out of pocket costs without insurance," Chandra said. "We would have to choose between his life and bankruptcy."

We've had two of those already this year.

Chandra said she had not been able to go back to work as a registered nurse due to Ethan's needs "so we're making this work on a single salary in NJ."

She said her family would have to sell the home they just bought and move to Canada.

"Thankfully my husband is Canadian, so we have an 'out' if we absolutely need it, but it will mean leaving Ethan's entire team of doctors and the one surgeon in the world who really understands how his heart works now," Chandra said.

She said that many of their friends in the heterotaxy community did not have the luxury of an "escape plan" like theirs.

"The fear and anxiety surrounding this bill is palpable right now," she said.

"A lifetime cap on benefits is the same as saying, 'Sorry, you're not worth keeping alive anymore. You're just too expensive,'" Chandra wrote in her Twitter thread that has since been retweeted by thousands of people.

A lifetime cap on benefits is the same as saying, "Sorry, you're not worth keeping alive anymore. You're just too expensive."

"Tell that to the boy who just tucked a sick firefly into bed with a leaf blanket and told me to keep the light on so he wouldn't be scared," Chandra wrote.

Tell that to the boy who just tucked a sick firefly into bed with a leaf blanket and told me to keep the light on s… https://t.co/qbTk9cSdxc

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"Tell that to the boy who picks me bouquets of sticks instead of flowers because he loves them better so he's sure I will too."

Tell that to the boy who picks me bouquets of sticks instead of flowers because he loves them better so he's sure I… https://t.co/x06teA69gq

"Tell that to the boy who wraps his warm arms around my neck and snuggles close after a nap."

Tell that to the boy who wraps his warm arms around my neck and snuggles close after a nap.

"Look my son in the eyes and tell him that he's fought so hard to be here but sorry, you're just not worth it anymore. I dare you."

Look my son in the eyes and tell him that he's fought so hard to be here but sorry, you're just not worth it anymor… https://t.co/OxwspmWd3W

"His life is infinitely precious," Chandra wrote. "That's why we fight so hard."

I don't even know how to end this thread, how to keep typing through my tears. His life is infinitely precious. Tha… https://t.co/V15mSiZrZG

Chandra said she did not anticipate how viral her thread would go. "It's been kind of crazy, honestly, but I'm hoping that I can be a clear voice for our community and for kids like Ethan who stand to lose so much from this bill," she said.

It really comes down to whether or not you think America, the richest nation on Earth, is wealthy enough to save ki… https://t.co/JtiTntdiCH

"I just want to share our story, to get people to realize that politics are always personal, that the statistics you read aren't just numbers," Chandra said. "They're names and faces and little boys who stay up late catching lightning bugs."

Ali Chandra

Chandra said that her four-year-old daughter picked up on their conversations sometimes.

"She told me recently that when she becomes president she's going to make sure that everyone can go to the doctor when they need to," she said.

Tasneem Nashrulla is a reporter for BuzzFeed News and is based in New York.

Contact Tasneem Nashrulla at tasneem.nashrulla@buzzfeed.com.

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