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Jimmy Kimmel says no parent should decide if they can afford to save their child’s life. Here’s our story.

Late-night host Jimmy Kimmel makes a tearful plea over his son's heart condition on his show on May 1. (Video: Amber Ferguson/The Washington Post)

“I have a story to tell about something that happened to our family last week,” Jimmy Kimmel began. “And before I go into it, I want you to know, it has a happy ending.”

On his show Monday night, Kimmel went on to explain how his son Billy was born April 21 with congenital heart disease. It all began when his nurse, Nanush, noticed a heart murmur.

I turned up the volume and stared at Kimmel’s red tie. I, too, remember the exact same moment when our nurse noticed our son’s heart murmur. We went through the same wait as Kimmel, watching the echocardiogram, wondering what would happen next. Kimmel’s son was diagnosed with tetralogy of fallot and immediately rushed into surgery. He had a hole between the left and right walls of his heart. Our son had two holes, but his surgery was pushed back until he was older. At 5 years old, his condition worsened, and he had his own open heart surgery three weeks ago.

The wait for our son’s heart surgery has been long and agonizing

“It was the longest three hours of my life,” Kimmel said.

It was the longest seven hours of ours. We said goodbye from a tiny white room, our son already sleepy with medication, his enlarged heart beating more slowly from the pre-medication. They wheeled him down the hall to surgery, and my husband and I sat in the chairs in his empty room. I didn’t cry. I couldn’t. I had to be ready for what came next.

They gave us a pager with updates throughout his surgery. It vibrated with news.

“He is prepped for surgery.”

“He is in the operating room.”

“He is on the heart bypass machine.”

That last text seemed so simple, but we knew what it meant: His heart was drained of blood. It wasn’t beating anymore.

Time was endless, like those three hours must have been for Kimmel. I stared at the wall, stared at the clock, stared at my mom when she offered me food. How could I eat? How could I breathe? His heart wasn’t beating anymore.

I couldn’t cry during my son’s surgery. I could barely breathe. I knitted him a scarf, staring down at the needles, watching the loops gather on one needle and transfer to the other. That seemed real, and possible. It seemed like something I could do — a promise for the future that seemed impossibly far away. But still I couldn’t cry. Not until I received the nurse’s text: “His heart is beating on its own again. We took him off the heart bypass machine.”

Then it all flooded in: The years of waiting, not knowing. The slow decline. The decisions. The insurance bills, the worries, the preexisting condition.

Without Obamacare, we would have lost our insurance when my husband’s company switched plans.

“Before 2014,” Kimmel explained, “if you were born with congenital heart disease, like my son was, there was a good chance you would never be able to get health insurance because you had a pre-existing condition.”

It’s already so much to just pay the deductibles and the costs insurance doesn’t cover. What if we had to choose between paying our mortgage or paying his bills? He was two months premature. He spent his first 21 days in the hospital. What if we had to sacrifice his care to be able to buy breakfast? What if we went bankrupt?

We’d have done it — foreclosed on the house and maxed out our credit cards. We would do anything for our son, as any parent must understand. But as Kimmel said, “No parent should have to decide if they can afford to save their child’s life.”

That’s not the country we thought we lived in.

“We were brought up to believe,” Kimmel said, “that we live in the greatest country in the world. But until a few years ago, millions and millions of us had no access to health insurance at all.”

Because of Obamacare, my son has health insurance. He received excellent care, and he is home now. He was sitting on the couch doing a word search with his Grammy when I got our first hospital bill yesterday. It didn’t matter what it said: We knew we wouldn’t pay more than the $3,500 deductible.

And as the bills pour into the mailbox this week, we’ll call the hospital, set up payment plans, and focus on his recovery. Because that is what matters. Well, that and circling the word on the word search before Grammy does.

So now I’m speaking out, right along with Jimmy Kimmel. Because the political is now intensely personal for us. As Kimmel explained, President Trump argued for a $6 billion dollar cut to the National Institutes of Health, and 40 percent of those affected are children like his son, and like mine. In fact, the hospital where my son had his surgery — Oregon Health and Science University — received $234 million from NIH in 2016, according to John G. Hunter and Daniel M. Dorsa.

The Senate didn’t agree with the cut and instead boosted NIH by $2 billion. That’s a step in the right direction.

But it’s not just about NIH funding, and it’s not all about Obamacare. Don’t listen to the political sparring. These are our kids. They’re kids like my son, whose heart is no longer enlarged. They’re kids like Kimmel’s son, who is home now, too. He has more surgeries in front of him, and his dad shouldn’t have to fight for coverage.

“If your baby is going to die and doesn’t have to, it shouldn’t matter how much money you make,” Kimmel said.

We need to fight for a world where all kids can have the same happy ending. We need to be able to see the moment where they throw the word search on the floor and chase Grammy around the house. Where the price of health care is a burden we share, making everyone’s load just a little bit lighter. Where we can leave the bills unopened on the counter for a while, content that we have the one thing that really matters.

As Kimmel says, “we need to take care of each other.”

Kate Ristau is a folklorist and the author of a young adult series, “Shadow Girl,” and a middle-grade series, “Clockbreakers.” She lives in Portland, Ore. Find her on Twitter @kateristau.

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