In a now-viral tweet, Alison Chandra posted a photo of her son's latest hospital bill. Chandra’s son, Ethan, was born with heterotaxy syndrome, a rare genetic disorder in which organs form on the wrong side of the body, CNN reported.
"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," Chandra told CNN.
On Friday, Chandra tweeted a hospital bill for services received from Boston’s Children’s Hospital earlier this year.
"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," she wrote. “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.”
Chandra’s tweet has been liked more than 80,000 times and retweeted more than 53,000 times.
"That is why I like to tell our story. Maybe you hadn't thought of this side before. You don't picture a 3-year-old with all these fees,” she said.
Chandra, who said she didn’t follow politics until November, said she was “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,” she told CNN. “My fear is that this bill comes into play and suddenly essential health benefits are no longer covered, like hospitalization, prescription medications. (Ethan) 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.
“As a mother with a kid who has disorder you feel alone ... We just want him to be a kid.”