Ethan Chandra, who is turning 3 on July 1, was born with heterotaxy syndrome, a rare genetic disorder in which internal organs are abnormally arranged in the chest and abdomen. He has nine congenital heart defects, two left lungs and around five spleens. His stomach is on the right side instead of the left, and his liver, gallbladder and heart are all down the center of his body.
The New Jersey tot has already visited the operating room eight times and has had four open-chest surgeries. While each step of the way has been pretty costly, Ethan's mom is worried it can get so much worse.
Mom Ali Chandra was so outraged about the latest health care plan being pushed through the Senate that she decided to share Ethan's most recent heart surgery hospital bill. The 33-year-old kicked off a series of heartbreaking tweets that showed a bill for $500, which would have been $231,115 if it weren't for health insurance and Obamacare protections. According to Chandra, this total was for 10 hours in the operating room, one week in the Cardiac Intensive Care Unit and one week on the cardiac floor.
I call this one "At Least the Child Got Some Sleep." Today's crisis: the fact that I am here alone, we are on precautions, and thus I have no way of acquiring coffee because I'm not allowed to take him out of the room. #ethans_heart #heterotaxy #CHDawareness #tulablanket
"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 on Twitter. Her son will need additional surgeries, but she noted "this was not the last time they'll open his chest."
He takes five prescription medications multiple times a day, which adds up—and wouldn't be possible without insurance.
It seems like our kids are being reduced to a line in a budget. No one seems to realize there are real people behind it.
Chandra is worried the new Senate draft bill, also known as Better Care Reconciliation Act, will allow states to ask permission to reduce required coverage, including essential health benefits such as treatment in the hospital for inpatient care, and will allow lifetime caps to be reinstated. The total cost of Ethan's medical care has already past $1 million. Currently, the Affordable Care Act stops insurers from setting yearly or lifetime dollar limits on essential health benefits.
"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," Chandra told CNN. "It seems like our kids are being reduced to a line in a budget. No one seems to realize there are real people behind it."
Part of her pregnancy, delivery and Ethan's first two surgeries were paid for by Medicaid, which might see significant reductions in coverage with the BCRA. Once her husband got a job, the family switched to insurance covered by his employer, which is the insurance they currently have.
Chandra pointed out on Twitter that if lifetime caps were reinstated, her son would already be out of luck since his one open-heart surgery cost nearly a quarter of a million dollars and he blew past the million dollar mark long ago.
One year of battery power under his belt, and our little robot boy is living his life at such a beautiful, reckless pace that he's left himself with only another trip and a half around the sun before he'll need a new one. . The paradoxes in this life are always so jarring; I want to weep at the thought of him going back under the knife so soon, but the fact that he's running and playing and hiking and doing all the things I never thought he would? Some things are worth draining your battery for. . Here's to another helter-skelter year and a half, my bravest boy. We'll worry about the battery later. . . . #ethans_heart #CHDawareness #heterotaxy #pacemaker #zipperclub #scarsarebeautiful #biventricularrepair #cc_sillyfaces #instaprompt_thankful
"A lifetime cap on benefits is the same as saying, 'Sorry, you're not worth keeping alive anymore. You're just too expensive,'" Chandra writes.
"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. 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."
"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."