Health
Health

Mother Of Son With Rare Disorder Tweets Hospital Bill (Photo)

| by Michael Doherty

A mom whose son has a serious medical condition posted a copy of her hospital bill on Twitter to make a statement about health care.

Allison Chandra of New Jersey tweeted an image of a hospital bill for her son, Ethan, which quickly went viral on social media, CNN reports. Allison spoke about how much she would have had to pay without health insurance for her son.

"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," said the mom, sharing a photo (below) of the bill.

"I'll save you some math," she added. "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."

Allison added that Ethan has had four such surgeries, and that he "takes 5 difference prescription medications multiple times a day. All of this adds up."

"None of this would be possible without insurance," added Allison.

"As long as we have him with us (and I hope with everything in me that it's forever) we will need to pay for expensive medical care," tweeted the mom. "A lifetime cap on benefits is the same as saying, 'Sorry, you're not worth keeping alive anymore. You're just too expensive.'"

Allison said that Ethan has heterotaxy syndrome and was born with nine congenital heart defects and two left lungs, along with a host of other medical issues.

"Heterotaxy syndrome literally means different arrangement," the mom said. "Any of the internal organs can be malformed, missing, multiplied or misplaced."

Allison said she's concerned for her son's health care with the Republican health care bill making its way to the Senate floor.

"My fear is that this bill comes into play and suddenly essential health benefits are no longer covered, like hospitalization, prescription medications," said Allison. "[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."

Allison's image of the hospital bill has been retweeted more than 53,000 times. She said that the post has helped her discover a community of families dealing with heterotaxy, and made her feel less alone. She also shared her story to put a face on the issue of health care.

"You don't picture a 3-year-old with all these fees," the mom said.

"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," she added.

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