Finding a Heart

Victoria Marsh and Hiromi Awa are sitting at a table, poring over Japanese characters. Hiromi has chosen these characters for their sounds and meanings and Victoria is in the process of selecting a pair of them to tattoo on her body that night. Some make a sh sound, others an awn, and tattooed together they will read "Sean."

"This sh means 'everywhere,'" Hiromi explains through a translator. "This awn means 'in the clouds.'"

"I like that," Victoria says.

Hiromi shakes her head, dissatisfied. "I worry they are not the right clouds. I fear they may suggest a cloudy day, not the clouds in heaven, which is what we want."

"Then why don't you tell me what you like," Victoria suggests.

"I like this combination," Hiromi replies, pointing to another set of brushstrokes. She has spent a great deal of time researching the characters, contemplating how best to memorialize her friend's baby boy, and though her voice is sad, it's also confident. "This sh means 'flies in the sky.' This awn means 'his voice.' If you put them together your tattoo will mean 'his voice as he flies in the sky.'"

"And if you read it out loud," Victoria confirms, "it will say—"

"Sean."

Victoria looks at Hiromi. Hiromi looks back at her. The translator continues to speak, but the women no longer listen. They shift away from her and lean toward each other. Their shoulders soften. Their eyes move with fast familiarity. They are clearly more comfortable communicating without words. This is what they did for weeks in the hospital, while their sons lay waiting for heart transplants. It's what they're inclined to do again now. But this is the first time they've seen each other in the four months since Sean died, and there are many memorial projects to tend to: an origami table they want to set up at the hospital, a story Hiromi wants to write about Sean, and the design of this tattoo.

"If that's what you like, then it's what I want," Victoria says.

Hiromi's 3-year-old son, Hiro, squirms in her lap. He was the lucky one. His transplant succeeded. When Hiromi brought him to New York from Japan for treatment, it was unclear whether he'd survive the long flight. He was born healthy but developed a rare heart muscle problem at the age of 1, the translator explains to Victoria. "Really?" Victoria asks. Sean was born with a congenital condition in which half of his heart failed to grow, the translator explains to Hiromi. "Ah," Hiromi says nodding. It's hard to believe the women spent all that time together in the hospital without knowing what was wrong with the other's child. But you quickly come to realize they didn't have to know. There were plenty of doctors around with whom to share facts. Far more important was to have someone with whom to share the feeling: the feeling of waiting with your child as he waited for a heart, not knowing whether he would live or die.

"Hiro, you look fantastic!" Victoria cries, smiling warmly at the boy who now has meat on his bones and pink in his cheeks—a color especially precious to heart patients, who tend toward a pearly purple-white.

Hiromi leans over her son and stares at a photo of Sean, which she has placed in a silver frame on the table. Sean was a classically beautiful boy with blue eyes, blond hair, and a mini version of his father's square jaw.

Hiromi sighs. Victoria nods. It just isn't fair that one of the boys should have lived while the other died. But Victoria has decided not to let this be a barrier in the friendship, and so it isn't. Hiromi slowly starts asking questions for a children's book she hopes to write about Sean. She politely inquires about his birth, his illness, how long he'd been in the hospital before Hiro arrived. But when she reaches the subject of his last night, her reserve breaks like a dam and a torrent of feeling comes gushing out: "Where were you?" she asks Victoria. "I saw the empty bed! I ran down the hall! I wanted to ask the nurses what happened, but I was afraid to hear what they would say…"

The story begins when Victoria, who was pregnant with twins, went for her 20-week checkup. The doctor discovered that the left ventricle of Baby A's heart, the major pumping chamber of blood to the body, had stopped growing. The condition was so severe that no one knew whether the child would make it through the pregnancy. If he died in the womb, his twin was likely to die from the physical shock. Victoria, who lives in Stamford, Connecticut, was referred to New York–Presbyterian Hospital in New York City and put on drugs to help her baby's struggling heart.

On a hot August morning, at 36 weeks, Sean and his sister, Delaney, were born. By that afternoon, Sean was having an emergency cardiac catheterization to relieve the pressure in his heart. Six days later, he had his first major surgery to reroute his blood and turn the right side of his heart into the main pumping chamber.

It was a long and challenging operation, but Sean pulled through, just as he'd pulled through the pregnancy. There were intestinal troubles, feeding difficulties, and he had to spend another seven weeks in the hospital getting strong enough to go home. Victoria and her husband, Patrick, rotated shifts so one or the other could be by Sean's side. Though they lived 40 miles away, had a 3-year-old son, Ian, in addition to Delaney, and Patrick had a stressful job in finance, "we wanted Sean to know we were there for him," Victoria says. "And by the way," she adds, smiling, "he did."

Sean finally went home at the end of September, just shy of 2 months old. He didn't smile. He didn't coo. The skin around his mouth was purplish from inadequate oxygenation, and his eyes had the worried look of an old man. But he was rocked, bathed, serenaded with baby songs, dressed as Mickey Mouse for Halloween. Within a month or two, Victoria says, "you could see him start to think, 'Hey, maybe I'm not going to be poked or prodded every two days.'" The smiles started. And then the laughs. Almost all the typical baby behaviors but the whining. "If the twins were hungry and I fed Sean first, Delaney would cry," Victoria says. "But if I fed Delaney first, Sean would stay calm and watch. His attitude was, 'If this doesn't hurt, then what's the big deal?'" By Thanksgiving he was kicking his legs. By Christmas he had meat on his bones. In January he went back to the hospital for his second surgery.

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.

She ordered a crane-making kit, which arrived two days later. And the Marshes were off on their origami adventure—Victoria thrilled to have something to do while she sat in the hospital, Patrick the self-appointed color czar. "I can't say I really cared what color the cranes were," Victoria says, "but Patrick became obsessed. There was a picture on the box of a set of colored cranes and we had to follow the pattern of the colors exactly. And I mean exactly."

And still no heart.

At this point in the process, Sean's doctors say, many parents try to protect themselves by spending less time in the hospital. But not the Marshes. They were there as much as ever. Making cranes. When the first thousand were completed, the next thousand began. Doctors, nurses, orderlies, visitors would poke their heads in Sean's room, ask what was going on—and find themselves folding. Out of sensitivity to Hiromi, who is a deep believer in the power of the cranes, Victoria skirts the question of whether she really thought they'd make her wish come true. But she will say they gave her something to do, something people could pop in the room and join with her in doing, something that helped make the terrible wait a little more bearable and a lot more colorful. "A nurse would come in to change one of Sean's tubes and there'd be a really pretty crane hanging from it," she says with a laugh. "I'd say, 'No, don't touch that! Don't you see how beautiful it is?'"

But still no heart.

Time was becoming an issue. Sean's body was weakening with every day on life-support machines. And in a cruel coincidence, Patrick's father, who had been sick with cancer, suddenly died. The four hours of his funeral were the only time in Sean's entire hospital stay that both Victoria and Patrick were absent from his bedside.

And still no heart.

Not for Sean, and not for Hiro, either. As the weeks dragged on, the mothers' bond intensified. Hiromi would bring Victoria origami flowers on toothpick stems. Victoria would bring Hiromi origami birds with crystal droplets. And these were the least of the gifts. Hiromi, whose husband had returned to Japan to care for their two older sons, says Victoria gave her "the feeling of being sisters," and courage. "Sean's situation was worse than Hiro's," Hiromi says. "But Victoria was so brave. When I saw her being brave, I knew I could be brave, too. Sometimes I would go into the shower and cry—it was important for Hiro not to see me cry. But then I would come out, think of Victoria, and smile at him."

Hiromi gave Victoria the comfort of knowing that someone understood how she felt. "You gave birth to this tiny person who's lying in this big, giant bed. His eyes are closed, he's got tubes stuck in everywhere, and you can't even pick him up and hold him. You wait, and you wait, and you have no idea how long you'll be waiting, or if he's even going to make it in the end. Nobody can know how this feels. But Hiromi did."

In late February, on Sean's 29th day of life support, Victoria arrived at the hospital to see many people gathered in his room. She worried that something was wrong. But in fact the news was excellent: Hearts were on the way for both Hiro and Sean.

Hiro's transplant began first. The Marshes didn't learn the outcome of it until later. At the time they were focused entirely on Sean's surgery, which they felt more excited than worried about. "Maybe this sounds crazy," Victoria says, "but it never crossed our minds he wouldn't make it. He'd already come through hell. This was the moment we'd been waiting for. We were thrilled. All the conversations in the hospital were, 'When he gets his heart, when he gets his heart…'"

The surgery went late into the night. Victoria and Patrick took some nurses and doctors to a tapas bar to celebrate. They ate. They drank. "It was the happiest night of our lives," Victoria says. Nurses would send periodic text messages from the operating room: "The old heart is out!" "The new heart is in!" "The new heart is pumping!" Victoria and Patrick returned to the hospital close to 3 a.m., elated. That's when Victoria ran into a night nurse who told her that Sean was bleeding. "What do you mean?" Victoria asked her. "The doctors are working to control it," the nurse replied.

Victoria, who was still nursing, went downstairs to a lactation room to pump some milk. At around 3:30 a.m., she heard a knock on the door. "I knew it was bad," she says. "If everything was okay they would have waited for me to go up to Sean's room. But they came down."

Victoria and Patrick were ushered to their child, who was wheeled toward them in a big bed. "People were saying things like 'There was so much bleeding, we tried all kinds of blood clotters,'" Victoria recalls. "I told everyone to stop talking. I said, 'Are you telling me he died?' My friend Alison, a nurse in the OR, looked at me with tears streaming down her face and said, 'Yes, Victoria, he's gone.' I went over to him. I needed to pick him up. I hadn't been able to pick him up for a month. But when I touched him, he was so cold. It didn't feel like Sean. My baby wasn't in there anymore."

Patrick leaned over his son repeating, "I'm sorry. I'm so sorry. I couldn't protect you. I'm so sorry."

Victoria and Patrick took Sean to his room to spend time alone with him. Victoria held her baby tightly in her arms, desperate to finally feel him against her body. "All I wanted to do was hold him," she says. "I could have held him for hours and hours." A nurse came in and suggested they give him a bath. Victoria loved the idea of tending to her child, cleaning him up, rubbing lotion into his battered skin. But Patrick, overcome by grief and feelings of helplessness, began ripping get-well cards off the walls and pleading with Victoria to leave the hospital. As strongly as Victoria wanted to stay, she felt she had to get her raging husband out of there. She kissed Sean goodbye and left. But she returned first thing the next morning. "I had to see Hiromi," she says. "I knew what it would mean to her to see Sean's empty bed." She walked into Hiro's room, where the Japanese boy was recovering in his own bed, and the mothers hugged each other and cried.

Sean's funeral was a pull-out-all-the-stops affair that Patrick described to friends as the boy's birthday, confirmation, prom, and wedding all rolled into one—every party he would never get to have. When it was over, Patrick tried to find comfort by throwing himself into work. Victoria, meanwhile, stumbled around the house, not knowing what to do with Sean's things, or herself. She plastered the walls with photos, put his unwashed blankets and clothes in ziplock bags to preserve his smell, and tortured herself with the thought that if only he had gotten a heart sooner, he would have lived.

Though there is never any guarantee that a patient will survive heart transplant surgery, Sean's doctors agree that his chances would have been better had he not spent such a long time on life support. But the length of his wait—more than four weeks—was typical. There are simply not enough organs for the patients who need them. Between 15 and 30 percent of the children who need hearts die waiting for them. "It's not a crisis of numbers compared to AIDS or cancer," says Elaine Berg, president and CEO of the New York Organ Donor Network, which procures organs for patients in the New York metropolitan area. "But it's a crisis because it's something we can solve. We don't need research or studies. We just need people to donate organs."

But not many people do. Though a Gallup poll shows that 95 percent of Americans support organ and tissue donation, according to the United Network for Organ Sharing, in 2006 the organs of only 8,024 people were actually transplanted after their deaths. Many intend to sign up as donors but procrastinate. Others insist on being buried intact. And a good number fear that if they get sick, doctors might try less hard to save them knowing that their organs could be put to good use. But the system is designed to safeguard against this possibility. The physicians caring for the patients are purposely not affiliated with the organ recovery teams. When a patient dies, the hospital is required by law to report the death to the local organ procurement organization, which then meets with the family to discuss whether the deceased may be a potential donor. "There's a strict separation of church and state," says Martin Woolf, of the New York Organ Donor Network. "There has to be. If this weren't an absolutely transparent system, then no one would donate at all."

It is especially painful, but especially important, to consider donating the organs of babies and children. "One of the many horrible things about our situation," says Patrick, "was knowing that for something good to happen to us, something tragic had to happen to another family." But the fact is that tragedies happen. When they do, parents may be too grief stricken to think clearly about the best course of action. That's why it is crucial to consider in advance what you would do if your child were to become a potential donor, and to realize that the benefits of donating extend not just to the recipient but to the donor family as well. "Losing a child is one of the most painful experiences in life" says Elaine Berg. "People feel so helpless. It can give them enormous comfort to know that something positive has come from their situation. We see it all the time. We're in the room with families when they're going through the unthinkable. When an older person dies, it is also comforting to donate. But when the person is younger, it can be even more meaningful, knowing your child is really living on."

Then of course there's the enormous gift you are giving—the gift of life—to someone like a little Sean or Hiro. The Japanese boy who arrived at the hospital on the brink of death is now a happy 4-year-old, playing with toy dinosaurs and living in Japan, where he and his family have become locally famous. When Hiro was so sick, his parents, both schoolteachers, could not afford to bring him to the States for treatment, and so their friends launched a national television campaign, raising more than $1 million. On her return to Japan, Hiromi felt an obligation to go back on television to show people the wonders that can occur when a country supports transplants and its citizens are generous enough to donate their organs.

Hiromi and Victoria have stayed in touch through translators and e-mail, continuing to support each other as much as they can. Victoria is also trying to help Hiromi publish her children's book about Sean, The Miracle of the Thousand Cranes. In it, Hiromi writes that even though some people may think the miracle of the cranes didn't work for Sean, it did. His body survived many difficult weeks on life support, and he got a heart. Though he died in the operating room, the thousand cranes led his way up to heaven. Following their flight, Sean was not scared. Now he is an angel, looking down on other children in the hospital.

It is now later in the day on which Victoria and Hiromi have chosen the tattoo. Hiromi has left to put Hiro to bed, and Victoria is walking into the tattoo parlor with Patrick, who is also getting tattooed. Over his heart. They are greeted by an artist who specializes in Asian lettering. Victoria decides to insert a crane between her two characters; Patrick, a cross. As the artist starts copying the characters, Patrick searches the design book for the right cross. But he can't find one. This one is too thick, this one too thin, this one too fancy. Patrick is a man who's used to getting things right. He excelled at school, in sports, and at work, but he couldn't do the one thing that mattered most: save his son.

"I'm okay talking about the facts," he says. "It's much harder to talk about the feelings. You want to protect your child. That's what every father wants. When you can't, you feel like a total failure, whether it was in your control or not. Every time I think of Sean, I feel like I failed him."

If it's been agonizing for Patrick and Victoria as individuals, it's been hard for them as a couple, too. Ever since that night in the hospital when she yearned to stay and he begged to leave, they have responded to the tragedy in different ways. "You assume you had this child together, so who'd be a greater comfort to you than your partner?" Victoria asks. "But we grieve in opposite ways." She looks incessantly at photos of Sean; it pains him just to see one. She needs to immerse herself in her baby's memory; he needs to clear a path in order to move forward.

This is why the tattooing feels promising—something quirky they are doing together to honor their son. Even more meaningful is the foundation they have set up in his name to raise awareness of organ donation and to support families whose children need transplants (see How to Become an Organ Donor ). "I need to make sense of what happened," says Victoria. "Sean was so strong. So brave. He was such a determined little fighter. Why did he die? I need to find meaning. I tell myself he made it through the pregnancy so Delaney could be born. And maybe he made it to the transplant so we could spread the word, tell parents to please, please think about donating their children's organs. Who thinks about this stuff? No one ever wants to think about this stuff. But life can be so unpredictable, you just have to."