Mom Shares 3-Year-Old Son's Astronomical Medical Bills To Illustrate Major Problems With GOP Health Care Bill

"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."

A New Jersey mom named Ali Chandra is sharing details about her young son Ethan's health issues in the hope that it will get people to see how devastating the GOP health care bill has the power to be, especially for people who need chronic medical care.

Though Chandra admits the Affordable Care Act has its flaws, she also knows without it, she and her husband would not be able to afford adequate medical care for Ethan, who was born with a condition called heterotaxy syndrome. Heterotaxy syndrome causes a person's internal organs to be malformed, misplaced, multiplied, or missing. For Ethan, this has manifested in a malformed heart, a stomach that is misplaced on his right side, and his liver, gallbladder, and heart placed down the middle of his little body. The toddler, who turns 3 on July 1, also has five spleens and two left lungs.

In a series of tweets shared last week that have since gone viral, Chandra posted a photo of the medical bill for Ethan's most recent open chest surgeries. He has had four so far, and will require more in the future. The expenses tallied range from lab tests to operating room services, and total upwards of $231,000 for ten hours in the OR, one week in the cardiac intensive care unit, and one week on the cardiac floor.


But looking at the bill, you'll notice Chandra and her husband were only responsible for paying $500 — roughly 0.002 percent of the total cost. As Chandra explained on Twitter, her family has insurance through her husband's job because, under the ACA, they weren't denied coverage due to Ethan's pre-existing conditions. Said employer insurance covers enough because of essential benefits protections, which would vanish under the GOP plan.

And as extensive as the bill Chandra shared seems, it doesn't take into account the family's frequent travel expenses from New Jersey to Boston, the medications Ethan now needs for the rest of his life to keep him as healthy as possible, other procedures that will be required down the road, and so much more. Since Ethan's health is so fragile, Chandra was also forced to quit her job as a registered nurse, meaning the family of four is surviving on only one income.

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

She explains, "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." To clarify, the premiums people pay for Obamacare go into a pool of money, which is then used to cover the bulk of medical care for anyone on Obamacare when needed. It's why Chandra and her family, in addition to premiums, only had to pay $500 of Ethan's $231,000 hospital bill.

If the GOP health care bill passes as is, it would strip many protections put in place by the ACA and be devastating for the Chandra family and millions of others like them.

For starters, the GOP health care bill that was unveiled last week gives states the option to reinstate lifetime caps, meaning states can determine a finite amount of money to be spent on a person's health care throughout their life.

For people who need continual medical attention like Ethan, these caps could easily bankrupt families and derail dreams. Remember, that $231,000 bill was for one surgery.

Former President Barack Obama touched on this exact issue in his scathing criticism of the GOP health care bill last week. "What will happen if you have a medical emergency when insurance companies are once again allowed to exclude the benefits you need, send you unlimited bills, or set unaffordable deductibles? What impossible choices will working parents be forced to make if their child's cancer treatment costs them more than their life savings?" he wrote.

In an interview with CNN, Chandra also explained how the proposed Senate healthcare bill will impact those who have insurance through their employers. "This bill will have serious negative effects on people who have employer plans, like us," she says. "It allows for the stripping and the waiving of essential health benefits, like hospitalization and medications." 

"My fear is that this bill comes into play and suddenly essential health benefits are no longer covered," Chandra adds, again mentioning the danger of lifetime caps.

"I don't think anyone can look a 2-year-old child in the face and say, 'I think you're not worth it,' but what they're doing with the lifetime cap is saying, 'You've used up enough resources. I'm sorry your mother chose life for you and you were born sick, but now that life is not worth saving anymore,' she explains. "You can't call yourself pro-life if you're not willing to be part of a system that protects the most vulnerable."


For Chandra and her family, the Senate bill, if passed, carries grave consequences with it. "If lifetime caps are reinstated, we simply won't be able to afford the out-of-pocket costs without insurance," Chandra tells BuzzFeed. "We would have to choose between his life and bankruptcy."

As Chandra's kept tweeting, her messages got increasingly personal. "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," she wrote.


Chandra insists she wasn't looking for sympathy or money in sharing these tweets (she even turned down the suggestion to start a GoFundMe page), but she did have a goal. "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," she tells BuzzFeed. "They're names and faces and little boys who stay up late catching lightning bugs."


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