Oct. 18--At a young couple's home in Thomasville, a freshly painted nursery waits for the newborn baby that never came home from the hospital.

Seventy-five miles away, at Duke University Medical Center, that baby girl -- 12-week-old Harley Grace Smith -- waits for a new heart.

At the same hospital, first-time parents Justin and Heather Smith wait for a miracle they know may not come.

Every time their cell phone rings -- every time -- their hearts race, wondering if this could be The Call. Wondering if, finally, a heart has been found for their precious daughter, who inches closer to death every day her parents don't get The Call.

Then wondering, when they hang up the phone, if they'll ever get The Call.

"We've turned it over to God," Justin says. "We know His will's gonna happen either way."

This wasn't supposed to happen, of course. The Smiths should be home by now, up to their elbows in smelly diapers and formula bottles, and bleary-eyed from midnight feedings. Instead, they're living in the Durham Ronald McDonald House -- right across the street from the hospital -- and their tiny daughter is hooked to an ECMO machine, a scary-looking piece of medical technology that basically does the pumping and oxygenating for Harley's frail, damaged heart.

"The doctors say a heart transplant is our only option," Heather says, "but we're gonna have to get one quick, because she can't stay on ECMO forever."

So how long can Harley stay on the lifesaving machine?

Most infants stay on ECMO for only a week or two at the most, because eventually use of the machine results in damage to other organs. Though there are reports of babies surviving on ECMO for as long as nine weeks, the Smiths' doctor says the longest he's ever seen a baby survive on ECMO is six weeks.

Harley is in her sixth week on the machine right now.

* * * *

When the Smiths learned they were having a girl, they fixed up the nursery and settled on the unusual name of Harley.

"We had a running joke," Justin explains. "I was wanting a Harley bike, but (Heather) said, 'What if we get pregnant before that?' And I said, 'Well, we'll just name our child Harley.'"

Turns out he got the motorcycle anyway, but the couple decided they actually liked the name Harley, so they stuck with it.

It wasn't until Harley was born -- on July 21 at High Point Regional Hospital -- that doctors discovered a problem with her heart. At first, they heard only a heart murmur -- which didn't necessarily indicate a serious problem -- but an echocardiogram revealed Harley had truncus arteriosus, a heart defect that prevents blood flowing from the heart to be as oxygenated as it needs to be. She also had a leaky heart valve.

Within a matter of hours, Harley was being flown to Duke to see a pediatric cardiologist. Justin and his parents drove to Duke, but Heather -- who had had a Caesarean section -- couldn't leave the hospital for another couple of days.

The surgeon tried to repair the heart, but the valve still didn't work, so he went back in the next day to try again.

"So she had two open-heart surgeries within 24 hours, and that was a lot of trauma to the heart," Heather says. "So after she came back from surgery the second time, they put her on the ECMO machine. It does everything that the heart would do, but it allows the heart to rest and heal."

Unfortunately, that valve began leaking, too, and on Labor Day weekend, Harley underwent her third open-heart surgery. The doctor actually had advised against the surgery, suggesting the couple should "let nature take its course," Heather recalls.

"He felt strongly that if we took her back to surgery, she wasn't gonna make it," she says softly. "He said, 'I don't know if she'll even make it through anesthesia,' because she was just so bad off. But we were thinking, 'What if?' We didn't want to have to look back and wonder what would've happened if we had done the surgery. We wanted to give her every chance she had."

Harley came through the surgery, but she's been on the ECMO ever since, and time is running out.

"There's still a chance," Heather says, "but her kidneys are starting to fail. She's got to have good kidneys before she can accept a heart."

* * * *

Justin and Heather knew their first few months as new parents would be an adjustment, but their journey has been wilder than most.

"It's been like a rollercoaster, with extreme ups and downs," Justin says. "One day we'll have so much hope, and then it crashes down a week later. And I guess the result of it is that after so much of it, you just get numb."

Heather constantly thinks about the life she dreamed of with Harley.

"That's been real hard," she says. "I had all these dreams about taking care of her, and all I can do is just look at her. We can rub her head, kiss her, maybe put a finger in her hand, but we have to be careful about touching her. If she's in pain, we want her to stay asleep as much as possible."

The Smiths find strength in the support they receive -- from their family, their friends and their God -- and they try to remain hopeful.

"People say 'You're so strong' and 'I don't know how you do it,'" Heather says.

"But I guess if you've gotten the news that we've gotten over and over and over, we take that news and we look at any glimmer of hope that we can, and that's what we hold on to until it looks like that's not there anymore. That's happened several times. And that's the thing about Harley -- every time they've said 'We don't know if she's gonna make it,' she'll come right back out of it, still living."

The Smiths know, though, that Harley has no chance unless a heart becomes available -- which means, of course, that another child has to die, and his or her parents must agree to donate the child's heart.

"That's something very hard to pray for," Justin says, "because you're praying for a heart for her, but it's somebody else's tragedy. But we think God's will is gonna be done, and if she's gonna get a heart, she's gonna get a heart. We just pray that if something happens to someone's baby, that they'll make the decision to donate the heart."

And if that doesn't happen -- if The Call never comes -- the Smiths say they're prepared for that, too.

"We tell people she's in a win-win situation," Heather says. "If she gets the heart, she's not gonna want for anything when we get her back home. But if she doesn't make it, she'll be home in heaven, and she's gonna have a healthy heart with God."

jtomlin@hpe.com -- 888-3579

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