An Enlarged Heart (7 page)

The doctor, my new friend, my enemy, the bringer of bad news, says, “You need to go to Boston, immediately.” He has called Children's Hospital in Boston; we can wait if we like for a confirmation of the diagnosis, but he is sure. “Can you stick out your tongue for me, baby?” he says to her, tiny in the bed. Her tongue is the bright red color of blood. “See,” he says to me, “See?” A nurse puts the bar up behind me, so I don't fall out. Now we are both patients. The doctor is speaking to me, and I listen carefully, because I know this is a test. It is the first of a score of explanations we will be given over the next days and weeks, but I don't know that yet. As I listen, I think, This is what growing old is. We think we will learn Sanskrit, learn Greek. Instead, what we learn is more than we ever wanted to know about things we wish we'd never heard of. I think only, You cannot fall apart.

“Kawasaki disease,” Dr. Rudman, a total stranger, says, “was discovered by a Japanese doctor. No one knows what causes it; it may be an autoimmune disease that reacts to staphylococcus bacteria. If it is not treated early, within the first ten days, 20 percent of patients, primarily children between the ages of six months and five years old, will suffer heart damage. The aneurysm can be fatal. It can be easy to miss, because the symptoms often do not present themselves at once: the red eyes, the swollen hands, the fever, the rash. The symptoms can come and go.”

I lie on the bed holding her hand and think, How dare he talk to me like this? Later, I will realize that he had no choice, that he had to tell me right away so that I would not argue with him, so that I would pay attention, but now I am angry. He tells me what we are going to do: Children's Hospital in Boston is the best place in the world to go, that is where we are going. Arrangements have been made. The treatment is a massive does of intravenous immunoglobulin. She has had the fever for five days. That is the earliest that Kawasaki disease can be diagnosed. Already, the rash on her hands is fading: once it had disappeared, diagnosis would have been more difficult. In a moment we have gone from being ravaged to being lucky. I realize it is Nate Rudman who has caught it early.

Her father arrives. When she sees him, she throws up. I wipe her face. It's the first time he has seen her on an IV. I am an old hand now, having been here for half an hour. There are four nurses in the room. I ask if it would be possible for them to leave us alone for a minute. I ask him to sit down, and then I tell him.

We sit in the room together for a little while, and then he goes out to make phone calls. Our other children are scattered about; we must have someone collect them. Their grandparents live nearby. They go to our house on the hill and wait for our children to be dropped off by friends. Where are their surfboards, where are their wetsuits?

While he makes calls, I lie on the bed. She is hot but not sweating. I tell her we are going to Boston in another ambulance. Wait until you tell your brother Jack you rode in an ambulance! I say. I tell her the doctors are going help her get better. They're hurting me, she says. When the nurse looms over to fix the IV, I tell her about our house, how I am a terrible housekeeper, how I am careless when I cook. I am maniacal. I tell her that I never clean properly, that I feed the children chocolate mousse made with raw eggs. She says it is not my fault, ten thousand children could be exposed to some weird thing, and only one will react with Kawasaki. Anyway, no one knows what causes it.

Of course it is my fault.

It will take an hour and fifteen minutes to get to Boston by ambulance. Behind us, cars clot the side of the road. This time the technician is young, overweight, and sweating in his uniform. He is twenty-four years old. I am told to strap myself in on the bench next to the stretcher. Instead, I crouch on the floor, beside her head. She does not let go of my hand. I remind her how when we drove up to the Cape a few weeks ago, our car started to rattle, and we took it to the garage. Remember how it went up in the air, and the little man came to fix it? It was the gasket, she says, nodding solemnly. Her huge blue yes stand out like anemones against the reddened whites. And then he fixed it and we went to Corn Hill? That's what this is like, I tell her. In the next days, we will talk about the car, and the little man, again and again. And it cost thirty-five dollars! she says with a whisper of glee.

Her hand is hot, her fingers like burning twigs. I hold on to it. I think, If this child dies, I will go mad. I think of a woman who wishes me ill, and I think, If something happens to this child, I will kill her. The technician asks me if I am all right, because I am crying. “If you act upset, you know, it can upset her,” he says.

I give him a look of pure malevolence. He is right. He says, “I know how you feel.”

Do you have children? I ask him.

“No, not yet.”

I tell him he is wrong.

He has a girlfriend. She works in Sandwich. He was in a car accident last year and she came every Sunday to see him. The problem is she's always tired.

Drop her, I think. She's twenty-three and she's tired?

It's dark in Boston. In the busy emergency room, the walls are yellow. The nurse is called Mike. The television set is on in the little room. She takes three bites of a turkey sandwich, and immediately vomits. Sheets are brought. I change them myself. Once, then twice. So what's going on here? Mike asks. For the fourth time in as many hours, I recite our recent history: the fever, the rash. He pulls up her hospital gown to look at the rash, which completely covers her trunk. The rash has colonized the scrapes on her knee and on her elbow. (She fell, I think, defensively. She's three, it happens!)

We are waiting for “the Kawasaki team,” doctors who are pediatric rheumatologists. No decisions can be made until the Kawasaki team arrives. We are lucky to be here, lucky, lucky, where there is a Kawasaki team. I call Dr. Lazarus in New York. They'll know, he says, they'll know. Her father comes in. He is too big to lie on the bed, so he pulls up a chair next to it. I go out to call the children. I ask each one what they would like to be doing if we were home. Rose wants to go back to Corn Hill to see her Italian friend, Giulia, who is leaving on Sunday. Jack wants to go to the flea market, Anna wants to go to the movies, to see
Blue Crush.
The phone is passed around, these things will be accomplished. Anna, the eldest, gets back on the phone. She's talked to my sister, who is a pediatrician, who has told her the truth. She'll be okay, won't she? Of course she'll be okay, I say.

At eleven thirty, four hours after we arrived in the emergency room in Boston, the Kawasaki team arrives. They are friendly and handsome, a well matched pair. There is no doubt, they say after examining her, that she has Kawasaki disease, but every indication is that she will be fine. I gather myself up from the bed. You can't tell me that with absolute certainty, can you? I ask. No, they say.

Her father and I are in new territory. I need to go to the very end, to the worst possible outcome, and see where I am. He thinks this is a waste of time.

We are moved upstairs, to a room on the eighth floor. It's an all-purpose floor. Some children breathe on their own, some don't. In the room, we try to sleep but she keeps waking up. She is covered with wires. It hurts when they pull. She was a colicky baby and for three months stopped crying only when I held her. I held her. When can we go home? she asks. I am ashamed of myself even as I think it that I am angry we are missing our time at the beach. It is Friday. We can leave once she has had no fever for twenty-four hours. Before she leaves, she'll have a echocardiogram, to establish the extent of the damage. The nurse comes in every hour. Right now her temperature is 103.5 degrees.

Kawasaki disease is about time and space: it's about measurement. If the coronary arteries expand too far—the difference is in millimeters—the damage is irreversible. There are only thirty-five hundred cases a year in the United States, but it is suspected that more are undiagnosed. It's apparently not contagious. Occasionally, there are geographic clusters, three or four children from the same area, but there's no real evidence. The dose of immunoglobulin retards the expansion of the arteries, and it matters how quickly the child receives the dose. The product has to be mixed. The components are frozen and they have to be defrosted. Her dose is ordered by the Kawasaki team at midnight, but it doesn't appear on the eighth floor until 5 a.m., because for two hours the order sat on someone's desk.

W
e are so exhausted that, even as wretched as we are, we could probably manage to sleep, but at 3 a.m., the room is rocked with noise. It's a double room, and three feet away, beyond the curtain, someone heavy is hurling himself (herself?) against the wall of a crib.
Bang, bang, bang.
Then a high-pitched keening, with no words. Yelping. In the din, a woman's voice says, “Oh dear, you got up too early, didn't you, didn't you.” She croons this. The banging and the growling continue. Holding hands, we hide in the white bed. In this long night, we have plunged, hapless, into a fairy tale. A nurse comes in on the hour to check her vital signs. What is that noise? I ask the nurse. She shakes her head at me, censoriously. The roar continues. A nurse comes in, finally, with immunoglobulin, which replaces the hydration IV pack. The countdown starts. Gray light creeps into the room. At eight, a head peeks around the curtain. It belongs to the night crooner: a pale, dumpy woman with short, dyed-red hair. She is wearing a Red Sox sweatshirt and navy-blue sweatpants. She could be forty, or sixty.

“Did she keep you up?” she asks. There is no word for her tone but consoling. “She's deaf and blind, you know, so she can't hear herself. I'm sorry if she kept you up.”

We look at each other. We have known from the beginning that things could be worse. Here is worse. Sunny, composed, the woman emerges from the bathroom. She says, “I'm going to brush her hair. She loves to have her hair brushed.” We listen, and from the other side of the curtain comes the sound of crooning, and what we can just make out as laughter.

A few minutes later, she rounds the curtain again. She is pushing a wheelchair. In the chair is a little girl with gleaming hair. She is wearing a pinafore, pink socks, and white sneakers. Her arms hit out at nothing, and her legs are oddly flaccid. Her ears are too big for her face, and the lobes are pointed. How terrible, I am thinking, to bear such a child.

Her mother looks at her. “She's four. She's adopted,” she says to us matter-of-factly. “When she was ten weeks old. Her parents couldn't take it—you know, the problems. They're wealthy, in California.” She pauses, stroking her hair. “Sometimes he send me money. I send him pictures, but I have to mail them to his office. The mother—she can't stand to look at them.” She looks at us fiercely. “Their own flesh and blood.”

Then she's benign again. “We live in New Hampshire, but we're here a lot. Cyclical vomiting. But I think we're going home today.” She unbuckles her from the wheelchair and takes her by two hands, like a toddler.

“Look who's walking,” cries a nurse in the reception area. There's a muffled sound of applause. Our own child, in bed but awake, looks after her. “That girl is like me,” she says. We look at her aghast. She points to the IV in her hand. “She has a mitten, too.”

A moment later, the same nurse—the nurse who would not speak to me in the early dawn—comes in again. She is all of twenty-five, twenty-eight, Boston Irish. She shakes her head. “There are three more of them at home. She takes care of them with her sister.” She pauses, checking the monitor. “I think she's very religious.” Later, we will tell our friend Storm, a priest, about the little girl, and we will accuse Storm of sending her to us. For now, we are stunned.

The days blur. Her father goes back to the Cape to take care of the other children, to round up their socks and flip-flops and towels from the houses of friends where they've left them. He drives back to the hospital the next day. We make telephone calls. No one's ever heard of this. Everyone goes on the Net: the phone rings with facts. Her grandmother flies up from New York, and takes up residence in a hotel across the street from the hospital. I become an old hand, I know where the Jell-O is kept down the hall. I do not leave the hospital. The immunoglobulin drips into her arm.

Her temperature drops, and for a few hours she responds. The fog lifts, and in those minutes we can see her, we get our child back. She wants blue Jell-O, she wants red. She wants ice cream. “I think my soup is actually warm,” she says. “No, it's actually cold.” But three hours after the IV drip stops, her fever almost immediately shoots back up again and she is gone. We have to do it again, says the Kawasaki team, which has become one person, a doctor from Nebraska in a violet sweater who has been in the hospital two days. In 1 or 2 percent of the cases we see, she says, this happens. What she actually said, first, was: I don't want to tell you this.

Because I am an idiot—even now!—a person (still!) who would send her children to school with a cough, I point out that it's early evening, the witching hour: everyone's fever goes up at night. She's cranky and tired. I have four children, I know this. No, the doctor, whose name is Dr. Woodward, says. Her pale face is rigid with sleeplessness. I am sitting on a hard wooden chair, a rocking chair, next to the monitor. By now I am so far, far away from anywhere I have ever been that I barely recognize my own voice asking a question. I know the thing to do is to turn and look directly at the doctor, and I do this. “What happens,” I ask, “if the fever doesn't go down this time? What will we do?”

The answer is nothing. There will be nothing to do. They had left the IV tube in her hand after the first dose of immunoglobulin in case they had to do it again. I didn't know that, now I do. Her father is on the way back to the Cape. I wait to call him until he's off the road, but he calls from the car. We decide he will stay with the other children. This time, Dr. Woodward takes the request for the immunoglobulin down to the lab herself. It is mixed quickly: the new dose starts three hours later.