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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