Jill Smolowe
May 08, 2006 12:00 PM

Nicole Draper leans into her baby’s crib and gently detaches the wires that have been taped to his chest since the day he was born. Next she removes the feeding and medication tube. Then she bends over and traces the scar on little Nick’s chest, the only outward sign that this cooing, vital 9-month-old with the Gerber-baby face has been a very sick boy. “It looks like a scratch, doesn’t it?” Nicole, 33, marvels. “You can’t really tell that he’s had a heart transplant.” As she bathes and dresses Nick on April 1 for his first trip outside the hospital, she tells him, “You are free, baby. You’re coming home, little munchkin.”

By home Nicole means not the Draper family’s house back in Phoenix, but rather two hotel rooms near UCLA’s Mattel Children’s Hospital in Los Angeles, where Nick received his new heart Feb. 16. Thanks to the generosity of a donor family who acted quickly after they lost their own baby son, “Nick got a second life,” says Nicole. Soon, she hopes, it will be the turn of his twin brother, Nathaniel, who lies in the ICU unit, tethered to tubes and monitors, awaiting a new heart of his own.

Though heart problems were detected during Nicole’s difficult pregnancy, the gravity of the situation only became clear after the twins were born last July. Both were diagnosed with a fatal heart condition known as dilated cardiomyopathy, which Nick’s transplant surgeon Mark Plunkett calls “rare in infants and pretty much unheard of in twins.” Since then it’s been a waiting game for the Drapers—Nicole, husband Michael, 34, Caitlin, 6, twins Emma and Brendan, 5, and now Nick—who are determined to stay put in their tight hotel quarters until Nate gets a new heart too. “We just don’t know when that will be,” Nicole says.

Or if it will be. As a pair the Draper twins are poster-child perfect for the national campaign to promote organ donation, which focuses attention on the 91,000 Americans awaiting organs against a list of donors expected to total only 15,000 this year. If Nick represents the miracle of organ donation, Nate represents the heartache of the wait. “Nate is doing as well as can be expected,” says Dr. Juan Alejos, head of the pediatric heart-transplant program at Mattel. “He has a little time.” No one can predict how long that will be. Last year nearly 6,000 Americans died while waiting for an organ; 35 were heart transplant candidates under the age of 1, a group particularly short of donors. Because they are protected by car seats and watched carefully, infants are less likely than older children or adults to end up in the fatal accidents that lead to organ donations. Bryan Stewart of the OneLegacy Transplant Donor Network, which helped facilitate Nick’s donation, adds, “Being a donor in this situation is very special and rare.”

Enter Jordan York of Panama City, Fla. After this giggly 4-month-old was accidentally smothered by a pillow on Feb. 13 while napping, his stunned parents, Tracey, a cashier, and Russell, a cook, made a tearful decision to donate Jordan’s organs (see box). Donor laws prevent release of the recipient’s name, but clues inadvertently dropped into a conversation at the hospital enabled Tracey, with a bit of Googling, to identify Nick. When the Drapers agreed to a meeting, the Yorks flew to L.A. in March. “I had to see who Jordan saved,” Tracey says. “I know if his heart’s still beating, he’s still here.”

The two families hit it off instantly, finding a bond in the Drapers’ and Russell’s shared Mormon faith. “It was like meeting family you’ve never met before,” says Russell. The Yorks presented the Drapers with a heart-shaped box, inscribed, “From Jordan to Nick, 2/16/06.” The Drapers reciprocated with a family portrait. Tracey found holding Nick and listening to his heart through a stethoscope powerful. “It felt like Jordan’s little soul was just trying to come out and say, ‘Hello, Mommy,'” she says.

The families made a trip to Disneyland, a day of normalcy that has been sorely lacking in the Drapers’ lives ever since the twins were whisked to L.A. days after their birth. “Life has been on a big pause button,” says Michael. Initially his parents moved in with the three older children, while Nicole relocated to the West Coast, and Michael shuttled between L.A. and his admissions job at the University of Phoenix. By fall the family was reunited, living first in a single room in a Ronald McDonald House, then, with the aid of funds provided by their Phoenix church, moving to two rooms in Tiverton House, a hotel closer to the hospital. They’ve also enjoyed generous support from their new church in L.A., which has provided the family with clothes and money. “I don’t know how you would endure this without faith,” says Nicole.

Today Caitlin attends a neighborhood school, while the older twins spend their days at the hospital, watching DVDs and hanging out in a playroom with the siblings of other patients. “I feel so awful,” says Nicole. “I never have so much as 10 minutes alone with each of them.” Michael, who thinks Nicole is too hard on herself, says, “She’s a great mom.” But he too feels the older twins are being shortchanged. “We have a book that’s called How to Teach Your Child to Read in 100 Easy Lessons,” he says. “We did them all with Caitlin. We’ve maybe done two with the twins.”

Now that Nick is “home,” free time threatens to become even scarcer. He requires up to 36 doses of medicine daily and must be watched constantly, since he often spits up Nicole’s expressed milk, which is mixed with a powder to up the calorie count. His siblings are doing their part. “You always have to know where the baby is,” explains Emma. Brendan, who didn’t detect Nate under a blanket during a home visit last December and landed on the baby with a flying leap, solemnly adds, “No jumping on the baby.”

Meanwhile Nate waits in the ICU for a donor. Placed second behind Nick because of a brain bleed that has since stopped, he is now a viable recipient for a heart. The Drapers, who wear lockets with four tiny spaces to be filled with pictures of Nick and Jordan, Nate and the donor they pray for, cling to their hope and faith. “We believe that it will all work out,” says Nicole. “Nate keeps hanging in there. He’s such a fighter.” On the morning Nick prepares to leave the hospital, Michael slips into the ICU. “Nick is going home today, Nate,” he whispers. “I know you’re a little sad, but we’ll get you out too. Just hang in there, little buddy.”

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