Because of Noah

When newborn Noah Hunter was diagnosed with a sick heart, many wonderful things happened.

How, though? How can a mother and father who have just been told they may lose their baby, their heart, manage to get up off the floor, much less make and execute a plan? How can they manage even to lift one leg, and then the other?

Peg Ayan does not hesitate. She just walks right up to—breaks right into—the Hunters' psychic and physical space and begins beaming herself at them. Hi! I'm Peg! And this must be Noah! Hello, Noah! Stephanie Hunter doesn't get it. This fusillade of energy and information and instructions is irritating and patronizing except for the fact that...it isn't. This small, fit woman in front of them, she's funny. Funny as in unusual, but also in the ha-ha sense. For two months, the Hunters have been immersed in a single thought. Our child is dying. Now Steph finds that thought paused, replaced just for a moment by: like a bird. It's the damndest thing. Something about the woman brings to mind a hummingbird hovering in midair. There's a coiled energy within and around her, something brilliant and electric, but at the same time intensely stilled, intensely focused. It's been two months since Stephanie Hunter laughed in a free and unselfconscious way, and she doesn't laugh now, but something about this stranger causes her to think about laughing, to remember it.

Peg Ayan never has trouble identifying the parents amid the throng of humanity in the lobby of Children's Hospital. Everyone else is going where they're going; the parents Peg meets there are the ones who are not. The Hunters are no exception. Ayan spots them just inside the threshold of the lobby doors. Zombies, she thinks. They look like zombies. The Hunters are frozen there, standing silently side by side and leveling hollow-eyed stares at...nothing. Which is Peg Ayan's cue to do what she has been called to do: to be the first thing the parents of sick children see when they enter the hospital—and to pierce the psychic caul in which those parents have sealed themselves with their baby.

As it is with all callings, Peg Ayan (rhymes with "SAY-in") never applied for the position. She'd been hired by the hospital's customer-service department in the fall of 2004 to conduct "satisfaction" surveys and compile "data." Real death-of-fun stuff. Then Children's chief cardiac surgeon asked her to research the "satisfaction" level of former "clients"—that is, patients and their families. Ayan, who'd grown up the youngest of 10 children and worked as a social worker in Boston's public schools, spent months interviewing former patients and their relatives, social workers, staff from other children's hospitals—nearly a hundred people—before announcing what she'd found: "We need to be nicer to the families."

Though the hospital's medical care was unsurpassed, there had never been an institutional response—at any children's hospital in the country, Ayan discovered—to the plain fact that the parents of profoundly sick children are nearly as vulnerable and at the mercy of fate as their children. The parents of the cardiac unit's infant and toddler patients were, in effect, being asked to understand and navigate the technology and bureaucracy and geography of an enormous institution at a time when it was all they could do to put one foot in front of the other. "What we need," Ayan said, "is some kind of welcome program." The "W" and the "P" were capitalized in May 2005.

As the so-called welcome coordinator for the Welcome Program for the cardiac unit—the Heart Institute—at Children's Hospital, Ayan began to function as a kind of stationmaster. She reached out to the parents of young cardiac patients two weeks before a scheduled surgery, telling them what to expect and answering questions. When the families arrived at the hospital with the color drained from their faces and their sick children clutched to their chests, she would meet them in the lobby and escort them through the rigmarole of pre-op testing. It was apparent from the get-go that Ayan and her program made sense from a division-of-labor perspective. Patients' families now had a one-stop resource to turn to for nonsurgical needs—everything from getting directions; to having stays in nearby hotels arranged and subsidized for out-of-town families; to being paired with the right social worker, counselor, or minister; to having the test coming up or the one just performed explained in plain language. Ayan was the one, for instance, who would explain to parents that the first order of business—having their child's blood drawn in the outpatient lab—would be one of the most stressful, since babies with sick hearts are "bad bleeders," and it could take even a veteran phlebotomist 20 minutes to find a vein.

Something else quickly became apparent to everyone working in and being served by the cardiac unit: that Peg Ayan, this sprightly fortysomething woman from the customer-service department, actually meant it when she gave those parents her cell phone number and told them to call for any reason at any time of the day or night. They did start to call, at all hours, and as often as not the calls did not involve the kind of informational exchanges that fell under Ayan's job description. These were long calls, from people who had just had bombs tossed into their lives. These people needed—if not an explanation of why their children were sick and dying, then to be witnessed, and in a certain kind of presence. Ayan's husband, who runs a bank, got to the point where he stopped asking about the calls and the stories. "Don't tell me anymore," he told his wife, because they were too much to take.

The people Ayan worked with, the social workers and physicians, began to worry, too. You've got to draw the line, they told her. It was the conventional wisdom, especially for surgeons: The best thing you can do for yourself and your patients is to keep a certain distance, to do just your job and nothing more; if you open yourself up to all that grief, you'll drown in it.

She didn't, couldn't, keep her distance, though, and the closer she got the clearer it became—to everyone—that Peg Ayan was a person who knew no bounds, who was capable of acting as a vessel for another person's sanity when he or she could not hold and preserve it. The only line she needed to draw, she learned through trial and error, was in the pre-op waiting room. The moment when parents had to hand their infants and toddlers over to the surgeons was the only one in which she found herself losing it—the only one in which she couldn't be a sturdy, steadying presence.

Otherwise, when parents were too fatigued or heartsick to update their extended families, or even to tolerate their physical presence, it was Peg who kept them informed, or at bay. Even during the aftermath, the days and weeks and months after a surgery, the calls continued to come. This was true for the parents of children who survived and grew strong—and it was also true for the parents of children who died. In a sense, a child, like any person, is a story. Stories need proper endings, and to be told. For many of those parents of children whose stories ended at Children's Hospital, Peg Ayan met both needs; she was the first face they saw there, and there was something about her that compelled them to make her, in effect, the last.

During the 144 hours Noah is in the hospital, the Hunters can only react. Only later, when they begin to think, do they consider Peg and wonder: How did she know?

By which Steph means: the fish tank outside the room where Noah's chest was being X-rayed. It was huge, that tank, its own world, hypnotic. Steph gazed into it. She hadn't slept in more than 36 hours, and at that moment what she needed was to be hypnotized by that fish tank. Except that her mother was sitting next to her, and for whatever reason, her mother's method of dealing with her own nervous energy at that moment was to externalize it. To talk. And talk. Then, suddenly, somehow, that nervous energy was elsewhere, being engaged and absorbed. Peg was asking Steph's mom where she was staying and how she liked it and what she did for a living, and then mother and Peg were chatting elsewhere, fading, and Steph was left to vanish into the mute liveliness of the aquarium. As she did, another peculiar avian thought crossed her mind. Like a mom taking care of her little chicks.