Mom of Boy With Rare Disorder Shares Hospital Bill in Response to Health Care Plans

From Good Housekeeping

Ever since Alison Chandra's son, Ethan, was born three years ago with heterotaxy syndrome he has been in and out of hospitals to fix the rare genetic disorder.

"Heterotaxy syndrome literally means different arrangement," Chandra told CNN. "Any of the internal organs can be malformed, missing, multiplied or misplaced. Ethan was born with nine congenital heart defects and he has two left lungs. Five or so spleens of dubious function, his liver and his gallbladder are down the middle of his body along with his heart, and then his stomach is on the right instead of the left side."

As lawmakers push to get a new health care bill through to the Senate, Chandra tweeted Ethan's latest hospital bill on Friday to prove just how important health insurance is to her family.

Chandra added up the entire bill in a follow-up tweet, in case you were wondering how much the total amount was.

"Without insurance we would owe $231,115 for 10 hours in the OR, 1 week in the CICU and 1 week on the cardiac floor," she wrote.

While Chandra told CNN she didn't follow politics until last November, "I have been shocked at how loudly each side yells about their specific talking points. It paints these issues as black and white when they are anything but that."

"My fear is that this bill comes into play and suddenly essential health benefits are no longer covered, like hospitalization, prescription medications," Chandra told CNN. "He will rely on prescription medications for the rest of his life. He is functionally asplenic and will need to take prophylactic antibiotics the rest of his life to prevent and protect against sepsis, a huge risk of death for our kids in the heterotaxy community."

Since Chandra posted the hospital bill on Friday, it has been liked over 80,000 times and retweeted more than 53,000 times.

Like any tweet that goes viral, Chandra has had to deal with a number of negative responses. The mother of two has responded to each with snapshots of her son and a short note to consider the human behind those hospital bills.

On a more positive note, Chandra's viral tweets connected her with a community of other families who have children with heterotaxy.

"As a mother with a kid who has disorder you feel alone," Chandra told CNN. "I am really hopefully this will lead to more awareness and maybe that mom who receives a heterotaxy diagnosis won't feel so scared."

At the end of the day, you can see the importance of Ethan's story, regardless of your politcal views.

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