Babies with Sean's condition—officially known as hypoplastic left heart syndrome—typically require three operations, after which at least 75 percent of them go on to live relatively normal lives. The second surgery went smoothly, and five days later Patrick accompanied Sean through a battery of tests to make sure he was healthy enough to go home. "Hey, Seany boy," he'd whisper, as he carried his son in his arms from hospital room to room. The tests went well, but by the afternoon Patrick noticed that Sean's heart rate was climbing: 140, 150, 160. He told the nurses. They said to keep an eye on it: 180, 190, 200, and suddenly Sean gasped, falling limp in his father's arms. It was a heart attack, as unexpected as it was devastating. What little functioning heart Sean had was damaged. His doctor decided there was no choice but to put him on life support and wait until a heart could be found for transplant.
In the United States, when a patient needs an organ, his name and medical profile are entered into a national computer registry. As organs become available, potential recipients are prioritized by region according to blood type and need, among other factors. Because Sean was so young and sick, he went straight to the top of the list. But there was no heart for him. The wait for organs is often excruciating for adults, but for children—especially babies—it can be more punishing still. The median wait for a young child's heart is two and a half months; for a liver, four months; for a kidney, 12 months. Once a child is of elementary school age, he or she may be big enough to accept adult-size organs. But younger children need smaller organs, which come from other children, and are therefore drawn from a narrower pool. Thanks to mandatory seatbelts and car seats, the pool has narrowed further still, while dramatic improvements in neonatal care mean more babies like Sean are being added to the ballooning wait list.
"The encouraging thing about transplant surgery is that the results have gotten so good," says Sean's surgeon, Jonathan Chen, MD, the director of pediatric cardiac surgery at the Cornell campus of New York–Presbyterian Hospital. "More than 90 percent of our patients will go on to live relatively normal lives. It's amazing. Miraculous, really. But though the success of transplant surgery has skyrocketed, the rate of organ donation has remained flat."
And so the long the vigil began: Sean lying with tubes in his nose, his arms, his legs, and directly into his open chest, Victoria and Patrick rotating 24-hour shifts to be by his side. One night Victoria noticed a Japanese family arriving in the ward, carrying suitcases. She had heard that a cultural taboo against transplants in Japan makes it impossible for children there to get them and that a 3-year-old boy who needed a heart would be arriving for treatment. What she couldn't imagine was how sick he would look: ghostly white, stick thin, with a belly as round as a basketball from liver failure. "My heart went out to them," she says. "Can you imagine flying across the world with a child so sick to a place where you don't speak the language?"
A few days later, one of Sean's nurses saw in his chart that it was Victoria's birthday. She gave her a cake. The Japanese mother noticed and came over with a birthday gift: a mother, father, and baby crane all made of origami. The nurses got to talking about how other Japanese patients had also seemed partial to origami cranes. Curious, Victoria went online to investigate. She discovered that the crane is a sacred bird in Japan and it is believed that whoever makes a thousand origami cranes will be granted a wish.
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