They were told their newborn could die within days. 11 months later, she's still here.

Doyin Richards
12.11.15

How would you react if you were told that your baby wouldn't survive through her first month of life?

Heather and Nathan Peterson can tell you, because that's exactly what happened to them.

Heather and Nathan. All photos are from Nathan Peterson and used with permission.

Everything started off pretty well for the Illinois couple. They had three healthy children, started a music group together called Hello Industry, and were ready to welcome a fourth child into the world.

But after Heather returned from a routine doctor's appointment, their world came crashing down.

Their unborn daughter was diagnosed with a serious chromosomal condition called trisomy 18, or Edwards syndrome — which means three copies of chromosome 18 are present instead of two. Children with this disorder may experience trouble with their vital organs, and the prognosis is usually not favorable.

Studies show that only 50% of trisomy 18 babies will survive birth if carried to term. Even if that hurdle is cleared, the sad reality is many of these babies will die within their first month of life. Under 10% of them survive to witness their first birthday.

It was starting to sink in for Heather and Nathan.

No parent wants to receive a grim diagnosis about their child.

"The doctor was sure she wouldn't make it very far," Nathan told me. "But we focused on the fact that she was alive today, even in the womb."

Against the odds, the couple were able to welcome their baby girl to the world.

They named her Olivia.

Olivia was born alive, but how much time would she have?

They cherished every moment with Olivia. But in the back of their minds, they knew that she could be taken from them any moment.

But their baby survived through her first day, her first week ... and she blew everyone away by surviving through her first month of life.

The lovely Olivia sleeping peacefully.

Month after month passed, and this girl kept defying the odds and kept thriving.

Now she's 11 months old and still going strong.

"She surprised everyone by living this long, and she's doing very well right now," said proud dad Nathan. "She's eating, breathing, learning, dancing, and smiling."

Here's the proof.

Olivia is one happy kid.

Nathan and Heather curb their optimism about the future and focus solely on the important thing: right now.

"I suppose the diagnosis is still the same," Nathan lamented. "We're trying to stick with the discipline we had while she was still in the womb: She's alive today."

Nathan does not take a moment for granted with his baby.

Smita Malhotra, a pediatrician based in Pasadena, California, has delivered the trisomy 18 diagnosis to parents.

Giving bad news is the worst part of her job, but she's quick to say that no matter how bad it may seem, anything is possible.

"As a parent, you feel incredibly helpless when you receive life-changing news about your child," said Malhotra, who co-owns a medical clinic in Pasadena. "As a physician, it's important to provide a diagnosis and prognosis from our clinical experience but at the same time, understand that resilience and incredible power of the human spirit gives us hope."

The only gift the Petersons want this holiday season is to spend today with Olivia.

To this family, a week seems like an eternity. Moments are measured in precious seconds and minutes.

In a society where everyone moves so fast, Nathan wants to share one important message with the world: Slow down and enjoy it.

"Live life. I know that sounds overly simplified and cliche, but personally I've spent a good portion of my life not doing it," he admitted. "I was afraid to name Olivia when she was in the womb. It made it more real and it would hurt more to lose her. But living that day meant giving her a name. Fear is always trying to stop us from living. Every single day, I make the continuous and sometimes difficult decision to really live."

"I was afraid to name Olivia when she was in the womb. It made it more real and it would hurt more to lose her. But living that day meant giving her a name."

On those days when we don't feel like getting out of bed, we should think of Olivia. Medical professionals said that her time on this earth could have lasted as long as it took you to read this article. Yet she's still here almost a year later.

Let's make the decision to love the good, bad, and ugly parts of today, because in reality, today is all we have.

Olivia will be happy you did.


trisomy 18 edwards syndrome hello industry smita malhotra
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Today, I'm a 35-year-old man with a flame shaved into my beard. If the '80s movies I love so much are any indication, this is a sure sign I'm going through some kind of existential crisis. Next week, when the semester starts and I begin teaching again, it will not be strange if my colleagues start to worry about me just a little. A sports car or a neck-jerking pivot to physical fitness — that's an understandable response to the realization that life is fleeting. But a large meticulous flame carved out of facial hair? What does one do with that?

At this moment, though, I'm showing my face proudly to a woman wearing a swimsuit with a taco cat on it. We have only recently met, but she's telling me that she's so into my "fade" that she wants to kiss it. Then she does, blowing a raspberry into my cheek so hard that her hat falls off. Neither of us can stop laughing.

"Live Mas!" she yells with the excitement of someone who's never had trouble fully seizing the moment.

"Live Mas!" I shout back without any irony. There is no irony here in Palm Springs, where, for four days only, hundreds of people celebrate their love for Taco Bell.

Here, there's only swimming and hot sauce-themed leisure wear, and the warm pleasant feeling that comes from eating too much and knowing that you're with your own people. Even if the only thing that connects you is a love for a fast food giant that feeds you when you're hammered and shameless at 2 a.m.

We drank the Baja Blast! My Taco Bell fade and my friend's specialty manicure!Mark Shrayber

What does it mean to Live Mas? This is a question I am forced to ask myself over and over during my 24-hour stay at "The Bell," where I have stowed away as a friend's plus-one. We are, of course, both politely pretending that I'm a full-on guest with all the perks that entails, but we also both know that I wouldn't be here eating unlimited quesadillas poolside without her.

So maybe that's the first thing Live Mas means: To build strong lifelong connections which you can, with some luck, exploit to your benefit. :) :) :)

But this is too cynical an interpretation, because everyone here is so happy. Happy that they've gotten a reservation; happy that they can cool off in a room themed after an iconic Mountain Dew Drink, and happy that they can share their own personal story of what Taco Bell means to them. (Though there's no formal essay contest — I've checked.)

Me: This room won't be that cool. Also me: OH MY GOD, THIS IS THE COOLEST ROOM I'VE EVER BEEN IN!!!Mark Shrayber

Snatches of this story float around the "Fire" pool, where all the entertainment is concentrated: One couple canceled their trip to Prague because "Prague will always be there" — a brave stance considering climate change; another met last year on Tinder after the girlfriend's Taco Bell senior photos went viral; at the opening ceremony on Thursday, where sauce packets were cut instead of a ribbon, a city official brought others to tears with both her Taco Bell fashion and a memory of how her parents would feed an entire family with 19-cent-tacos from the first-ever Taco Bell in Downey, California.

Oh, I forgot one: The guy who skipped out on Prague? He got a giant bell shaved into the side of his head, so he might have to miss out on a black-tie event happening later this week. But it's all good. Bring on the nacho fries.

I make fast friends with four women who are here for a bachelorette party, the bride overwhelmed with good vibes and prosecco. This year, for her 30th, she rented a party bus. Inside? $100 worth of Taco Bell that her fiancee was worried might not be consumed.

"But little did he know," she shouts in the hot tub where we're "cooling off" after a long day of 108-degree sunning, "we ate it all!"

A bachelorette party and a birthday! We're really living it up (but also staying hydrated.)Mark Shrayber

Others whoop it up at the twist, but we all get it. Though there's no essay contest, I don't mind telling you that when my first boyfriend dumped me 14 years ago, I stuffed my face with chalupas. When I lost a job I really loved four years ago, I once ordered so much Taco Bell that the delivery app of my choice informed me I'd exceeded the maximum number of items they could comfortably fill in one order. We get it — though none of us can truly explain it.

There are, if you look at the The Bell from a literary perspective, many other writers who deserve this experience more than me. They could talk about the blue of the pool. Or the insouciance of youth. Draw parallels between marketing stunts such as this and the end-stage capitalism. Or envision a "Demolition Man" future where Taco Bell is fine dining and none of us know how to use the three shells in the bathroom to get ourselves clean.

And I wish these writers could be here to paint you these landscapes, but what you've got is me, a literal Taco Bell super-fan, and what I'm doing is eating and getting sunburned and taking a synchronized swimming class with the Aqualillies, who refer to themselves as "the world's most glamorous water ballet entertainment," but have very little idea of what to do with 10 eager recruits who can't stay afloat or on beat.


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"It's okay," one of the instructors comforts me just before the Tacolilies (the name of our "team") are invited to perform our watery version of "Senorita" — which was supposed to be two minutes long, then 1:15, and has now been judiciously cut down, due to talent, to about 45 seconds — in the bigger pool. "We regularly teach five-year-olds. And you're doing much better."

Usually, I would take offense at such blatant reads, but today I'm unbothered. I'll continue to be so right until I get home and discover that I've left all my electronics on United Flight 5223 (if anyone wants to get them back to me). And even then, I rage at myself for all of five seconds before checking that I've still got what's important: A certificate that says I did not drown while doing water ballet.

It's still there. As is my phone, which is blowing up with messages from people who took pictures of me in what Taco Bell calls its "power suit," and which is best described as "cult outfit, but kinda make it fashion." I bought my husband one, too, and I look forward to the argument we're going to have about holiday cards later.

This is "Live Mas."

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Or maybe it's the moment another stranger tells me that we'll be friends forever. Such friendships are forged quickly when you've got less than 24 hours to make lifelong connections and I'm pleased to get the full experience.

"We may never meet again," he says while we're swimming, "but we'll always have this time together."

Then we establish that he lives just across the park from me in San Francisco.

"Aw, man," he says, floating away to take pictures of the people he came with, "I've got lots of close friends I never see because they live across that damn park."

But the sentiment holds.

We Live Mas it on.

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