PHOENIX, Ariz. — Sitting at her home in Phoenix, Ariz., Nicole Draper runs her hand along a small scar on her infant son's chest. The baby's twin brother sleeps at his mother's side.
"You would think the scar would be bigger," she says to the Church News, explaining that after receiving a heart transplant, the baby's chest remained open, hooked to a heart-and-lung machine, for more than a week while his new heart grew strong enough to beat inside him.
His brother has a scar too, but it's on his leg, caused by a medical test, not a heart transplant. After nine months of waiting for a donor heart, the Drapers' second baby's own heart miraculously healed, she said.
Sister Draper tells her story in a matter-of-fact tone. After all, it's a story she has told dozens of times since doctors in California placed her identical twins, Nicholas and Nathaniel, born July 11, 2005, on the national heart transplant list.
The twins suffer from a heart disease called dilated cardiomyopathy, a condition in which the muscles of the heart are not strong enough to pump efficiently. Doctors say it is extremely rare for a baby to be born with this condition, and even rarer that both twins would have it.
The babies' condition set in motion an almost year-long effort to help the family. National media covered their story (the Church News had reports in the Oct. 15, 2005, Nov. 5, 2005, and March 3, 2006 issues). Volunteers found numerous ways to be of service. Everyone hoped the family's prayers would be answered: Brother and Sister Draper of the Mountain Park Ward, Tempe Arizona West Stake, wanted their babies to get better so they could take them home.
BROKEN HEARTS
In early June 2005, Michael Draper was coming off an extraordinarily good month at work. He got a nice raise and made career goals. He was working toward his MBA and confident that in the next six months he could get into management. Maybe, he hoped, his family, soon to include five children, could move out of their three-bedroom home and into something bigger.
Then, on June 7, at 32 weeks into Sister Draper's pregnancy with twins, a pediatric cardiologist diagnosed problems.
"During the next four weeks things began to snowball," Brother Draper recalled. "Things just got worse and worse."
Sister Draper went into early labor. She was admitted to the hospital and stayed until the babies were born. After birth, with the babies' hearts deteriorating rapidly, doctors told the family the situation was irreversible. The boys were transferred from Arizona to Mattel Children's Hospital at UCLA in Los Angeles, Calif. UCLA's adult and pediatric heart transplant program is one of the largest in the world and has performed nearly 1,500 heart transplants since the program started in 1984.
Nicholas was added to the heart transplant waiting list first. Medical complications, including a brain bleed, prevented Nathaniel from being listed until two weeks later.
Soon the Drapers forgot about buying a new home. Sister Draper and the couples' three older children, Caitlin, then 5, and twins Emma and Brendan, then 4, moved to California. Brother Draper put his MBA on hold. He worked in Arizona for a few months, visiting his family on weekends, then requested a transfer to California. "In some sense, I put my career on hold," he said. "My focus was not on work for 12 months. My focus was on my boys and making sure my family was OK."
The family uses one word to describe their boys' first year: craziness.
Brother and Sister Draper admit that they each approached the craziness differently. Sister Draper, a returned missionary, became the family's spiritual anchor. Brother Draper, a convert to the Church, focused on taking care of his family's finances and growing medical bills. His wife had previously run an in-home day care business. After the babies' birth the family's expenses more than tripled, while their income was cut in half.
"I never thought it would end," Brother Draper said of the months the family spent in California. "I thought, 'It doesn't matter what we do. We are never going to leave. The boys are never going to get better.' "
Then, said Brother Draper, something would happen to alleviate some of the craziness. A check would arrive in the mail. The boys' health would stabilize. Someone would bring in dinner or offer to drive their oldest daughter to school. And every time, he knew what he had to do. He would step back and offer a simple prayer: "Sorry for doubting You."
Ultimately the family learned to not get too disappointed by bad news and not get too excited over good news regarding their boys' condition.
"We are scared," said Brother Draper. "But the one thing we do know: The Lord has taken care of us."
A GIFT
Because Nick was added to the heart-transplant waiting list first, he was prepped for surgery Feb. 16, when a donor heart became available. (It can take six months or more for infant hearts to become available.) In a priesthood blessing, the baby was promised he would not reject the new heart. But things did not immediately go as planned. The new heart was sluggish after transplant and could not sustain the baby. Doctors feared rejection — which happens in heart transplants less than 5 percent of the time.
They supported the new heart with a miniature heart-and-lung machine called an ECMO, or extracorporeal membrane oxygenation. They hoped the machine would give the new heart an opportunity to rest for several days and recover enough strength to work on its own.
Brother Draper said it is hard to remember the moment the family thought Nick might reject his new heart. He thought about all the baby had been through, and couldn't believe it would be for nothing.
Sister Draper reminded her husband of Nick's priesthood blessing; he would be OK, she told him. "That period was extremely stressful for me," he said. "I wasn't as secure in the feeling that everything was going to be OK."
But the heart did get stronger and so did Nick; he was removed from the heart-support device on Feb. 21.
The Drapers eventually met the family who gave their son life; the father of the 4-month-old Florida donor, who died of accidental suffocation, is also a Latter-day Saint.
Nick, then almost nine-months-old, was released from the hospital April 1. Brother Draper couldn't help but think how the wind must have felt on his son's face that day — the first time the infant had been outside a hospital.
A MIRACLE
After Nick received his new heart, the Drapers prayed that Nate, too, would receive a heart. The baby had shown improvement early on and, at 16 weeks, doctors had let the baby join his family at the Los Angeles Ronald McDonald House. Doctors said Nate didn't need to be hospitalized since he had responded well to being taken off an intravenous medication that helped his heart pump efficiently. However, doctors cautioned the family that despite his healthy appearance, Nate still needed a heart transplant.
Within a week, however, he returned to the hospital, where his condition continued to deteriorate. Doctors warned the family that the baby needed a new heart, and soon.
Then, one day while visiting her son in the pediatric intensive care unit, a doctor offered Sister Draper some encouraging news. The baby's heart was functioning good, he told her. Maybe he wouldn't need a transplant. Weeks later, tests confirmed the good news.
"There is a chance that Nate may not need a heart transplant in the near future, or for years to come," said Dr. Juan Alejos, medical director of UCLA's Pediatric Heart Transplant Program, at a press conference.
"This is as close to a miraculous recovery as I can think of," added Dr. Mark Plunkett, surgical director of UCLA's Pediatric Heart Transplant Program.
The news was tempered, however, by tests that showed Nate could be blind. Doctors indicated that a bleed in his brain at birth possibly might have affected connections in the brain and the baby's ability to see. The family will have to wait until Nate is older to know if the brain connections will reform, restoring his vision.
Sister Draper said the family has faith that their son, who was able to heal his own heart, may also be able to regain his vision. "Every parent wants their child to have all the advantages," she said. "He has overcome all these odds and he can overcome that too."
But the Drapers have also thought about a future for their son that does not include vision. They will treat him like their other children, they will make sure he cleans his room, they say.
Brother Draper recalls a moment in the hospital when Nate was just a few days old. He looked the baby in the eyes and knew he would be all right. "He is a fighter," he said. "I have always felt, some way, some how, it is going to be all right for him."
HOME
While Nick, with his new heart, and Nate, with his healed heart, both need constant medical monitoring and medications, the babies' health improved so much doctors allowed the family to take the babies to the hotel where they had been living since November. Weeks later they got the good news: both babies could return to Arizona.
Before the Drapers left California, they posted a note on the boys' web site, www.nickandnate.org, thanking all the people who had helped them. The list is long. It includes the hospital staff and doctors; the Ronald McDonald House and the Tiverton House (both places the family had stayed in California); Church members in California and Phoenix; the media; the many people who brought meals; the people from Brother Draper's hometown of Beaufort County, N.C., who held fund raisers for the boys; and of course, the family who gave Nick his heart. "If we have left anyone out, let us just say 'THANK YOU' everyone for everything. We have gained so many new friends during all of this," Sister Draper wrote on the site.
When the family arrived home, Church members had cleaned their house, stocked their fridge with basics, left clothes for the babies and art supplies for the older children. A crock pot with dinner was cooking on the counter.
It was fulfillment of a plea Brother Draper had made almost a year earlier. "We want our boys to have a chance," he had said. "We want them to come home."
Hearing the story in their home, this reporter looked up and saw a popular quote hanging on a wall: "Home," it said, "is where the heart is."
E-mail to: sarah@desnews.com