Alison Chandra's unborn son faced daunting odds of making it to his first birthday. And keeping him alive meant risky, expensive surgeries that their small family couldn't afford. Still, Chandra admits, she felt a bit of shame as she walked into the welfare office.
“I remember sitting across the desk from the woman in the office,” Chandra told The Washington Post. “She said it’s going to be okay. And I just — I think I hugged her. It was the first time that someone was able to tell me that something in this whole nightmare was going to be okay.
“There was a safety net and I was falling into it.”
At a prenatal sonogram, Chandra and her husband learned that they were having a boy, and that he had a rare disorder called heterotaxy syndrome.
He was born with nine heart defects, two left lungs and five spleens “of dubious function,” Chandra said. His liver and gallbladder are down the middle of his body, along with his heart, which needs a pacemaker to pump.
Ethan's third birthday is Saturday, but he's been through four open-chest surgeries. They've cost millions, Chandra estimates, and almost all of his early care was paid for by Obamacare.
Even though the family is no longer relying on Obamacare, his mother says her son is the poster child for Obamacare. And she's using his story as a message to Republicans attempting to change the health-care law.
Senate Republican leaders are trying to overhaul the 2010 Affordable Care Act and pass a new health-care bill, though they are facing opposition from the conservative and moderate wings of the party. Senate leaders announced on Tuesday that they'd postponed a vote on the legislation until after the July 4 recess.
The Congressional Budget Office forecasts that the bill would cause about 22 million more Americans to be uninsured in the next decade. That number is just over a million fewer than the CBO estimate on the House version of the bill, which was passed hastily last month.
As the debate rages, the picture Chandra tweeted of her son's adorable face, surgery scar and protruding pacemaker has rocketed around the Internet, along with its potent message:
“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 tweeted. “I dare you.”
And on Friday, she posted another image: Her son's $231,000 hospital bill from his recent heart surgery.
— Ali (@aliranger29) June 24, 2017
She's transparent in what she's trying to do: Put a cuddly human face on a debate about health care that she believes is filled with cost-benefit analyses and shouting.
She hopes their story helps people on both sides of the debate “just quiet down a little bit and look at each other. Come over to my house and spend the day with us and just look at my kid. He’s more than just a hospital bill. He's more than his preexisting condition.”
Obamacare isn't perfect, she concedes, but it's given her nearly three years with her son, who has developed an intense obsession with animals and is looking forward to a moose-themed birthday party Saturday.
— CNN (@CNN) June 26, 2017
Accepting government health care was a tough, embarrassing choice at first, she told The Washington Post, but it was the best way for her to fight for Ethan.
Chandra is a registered pediatric nurse and she and her husband were volunteers for Mercy Ships, a nonprofit that docks floating medical centers at needy countries, offering free specialized surgery and other medical care. She understands that health care is about healing, yes, but also involves triage and prioritizing needs in a world where health care costs money and resources are finite.
They had insurance when they got pregnant with Ethan, but it maxed out during the litany of prenatal tests.
“We came home expecting to have our baby and go right back to the ship,” she said. “Suddenly we were facing this incredibly uncertain future for our kid.”
Obamacare was a stopgap measure until her husband, an engineer, found a job with health benefits.
“Ethan didn't ask to be born with a preexisting condition,” Chandra said. “It's hard to preach personal responsibility to a 2-year-old.”
Obamacare was “a way that our country provided for us to be able to fight for our kid.”
Now, their family is fighting against attempts to get rid of some of the provisions that helped save Ethan's life.
A Republican-backed health-care bill has passed the House and senators are working to modify their overhaul to make it more palatable. But critics have said the bill would mean millions of people like Ethan, who have preexisting conditions, could lose coverage.
Chandra said she's also wary of language that would allow insurers to impose lifetime or annual caps, which could directly hurt her son, even though they've now switched to her husband's employer's health plan.
“I don't think anyone can look a 2-year-old child in the face and say 'I think that you're not worth it,' " she said. “What they're doing with a lifetime cap is saying you have used up enough resources. I'm sorry that you were born sick. I'm sorry that your mother chose life for you, but now that life is not worth saving anymore.”
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. pic.twitter.com/IgdQOounyB
— Ali (@aliranger29) June 24, 2017
There is no cure for heterotaxy. Ethan will probably always be dependent on his pacemaker, for example. In the meantime, she says, she's doing everything in her power to help her son thrive, while poring over any medical advancement that could give them more time with Ethan.
She already considers herself among the lucky ones. Between his major surgeries, he's an active almost 3-year-old who makes mud pies and runs through the woods with his older sister.
And along the way, she's seen small victories in a battle she hopes lasts for decades.
“There’s actually a specific moment when he realized that his life has changed,” she said. “He was walking with me. It was shortly after the surgery in February. He would stop every few steps and tell me 'I have to rest now.'
“But he kind of stopped, he looked at me and he said, 'Mama, I’m not really tired. I’m not getting tired.'
“And he said, 'Mama, I’m Superman.' And he just took off running. He ran like a quarter-mile before he stopped.”
Kristine Phillips contributed to this report.