An Enlarged Heart

by Cynthia Zarin

  We do not have a telephone. The cell phone works only if you walk a quarter mile down Corn Hill to the public-beach parking lot. There are no all-night drugstores. This is why we come here. We like it. We are against the plans for the new Stop & Shop in this small Cape Cod village.

  Get Anne, I say. One of the children, white-faced, returns from next door with Anne, who left the table only twenty minutes ago. While we are nonchalant about our children, Anne’s father was a doctor in rural South Africa, and knowing more—knowing what can happen—she is careful. When she peers into the bed, she agrees right away that something is wrong: the child looks odd. Her breathing is coming in shudders. Someone remembers that Giulia’s grandmother, down the way, has a telephone. No doctor at the Health Services, in Provincetown, is on call for summer residents; we must call the Rescue Squad. We worry that we are being ridiculous, but we call. Her father goes out into the dark to wait for the Rescue Squad.

  The van comes in five minutes, red lights flashing. Her temperature is 100.1 degrees, her vital signs are normal. If we are worried we can take her to the hospital in Hyannis, an hour away.

  We decide to wait until morning. In the kitchen, she sits on my lap in one of the red chairs. Because we have run out of medicine and have not replaced it during the day—another sign of our foolhardiness, our nonchalance—even though it is too late, we call our friends up the road, Luke and Emily, the parents of our children’s friends, and they arrive by car in what seems like an instant, bottle in hand. I take off my vomit-covered sweater. She throws up, just a little, on my shirt. But she is smiling, at Emily, who is looking at her with great tenderness, saying, Poor baby.

  The next morning, while the other children sleep, we take her in the station wagon to the health clinic in Provincetown. The waiting room, streaming with light, is almost empty. Two emaciated men sit next to each other on the wall facing the parking lot. There are no appointments until later in the day, but the nurse, after looking at me, comes out to the parking lot to have a look at her. Immediately, there is an appointment. The nurses are beautiful and tall. This is Provincetown, and I wonder briefly if they are transvestites. The doctor’s lovely mild face is perplexed. It looks like a virus. Her fever is 101.2 degrees. We are to alternate Tylenol and Motrin every three hours. Her skin is dry to the touch.

  At home, she is hungry and wants lunch. She eats ramen noodles, and throws up. The older children wake up, eat breakfast, and are taken to the beach with the surfboards and boogie boards, their horrible pink juice, their box of Goldfish. Her fever disappears.

  She wants to play Wiffle ball on the strip of sand on top of our dune. After playing for ten minutes, she goes inside and sleeps with her blanket on the couch. That morning, she vomits twice. In the morning, she got into our bed and, turning her head, vomited directly into my hair. She is hot again. On her back there are a few scattered red marks, as if a bird had walked along the short length of her spine. We call her doctor in New York. He is away, taking his child to college. We speak to another doctor, his partner. He says, “Take her back to Provincetown.”

  Now at the clinic we are treated as old friends. “Hello, hello,” they say.

  One of the tall and beautiful nurses takes her blood pressure. The doctor arrives. Her temperature is 102.4 degrees. When she coughs, she takes a moment to catch her breath. Her breathing is shallow, and she is whimpering. The doctor decides to take a blood count: Maybe there is an infection we can’t see?

  The blood test shows nothing. Her white-blood-cell count is normal. The doctor examines her again. The rash on her back has spread to her stomach: small red dots just under her skin, from sternum to groin. But now she has an infection in her left ear. This is good: there is something to do. New York is called, and agrees with the doctor’s recommendation, a massive shot of an antibiotic called ceftriaxone.

  It may also attack any bacterial infection that may be lurking. That day’s notes say, “case assumed by Dr. Lazarus in New York,” followed by the phone number of the pediatrician’s West End Avenue office. The antibiotic will be injected into the muscle of her thigh. Her father leaves the room. Hold her legs down, I’m told. I hold her small legs. Are her eyes red? It’s hard to tell. She is crying. When we leave the clinic, we are both given get-well stickers. One for Mommy, the nurse says.

  In the car back to Truro, past the long seep of dunes where the Pilgrims first found fresh water, I think: scarlet fever. Malaria. Diphtheria. Smallpox. Scurvy. Leeches. Flu? My aunt and my father had polio when they were children. My grandparents closed up their house in Brooklyn and moved to a hotel near the hospital. When we get home, she lies on the couch with her blanket. It’s a rainy day, and the hill is full of children. Anna, Lev, and Joseph take turns reading to her. The Wolf eats Grandma; the Troll bellows from under the bridge. She smiles, on and off, and eats a few Goldfish crackers. Her four-year-old friend Adam goes in and out of the house cheerily, checking in. I count up in my head. Taking our children all together, we have thirty-eight years of child-rearing experience. If you include our friends who drop by and stand over the couch like figures in a nineteenth-century print, The Invalid, the number lurches up to a hundred and thirty-three. The consensus is that something’s wrong with this child. And our friends are not keeping their own children away: the unspoken feeling is that, whatever this is, it isn’t contagious. Later I will think, How did we know?

  For supper, we have corn from the farm stand, cherrystones and grilled tuna for the grown-ups, and hamburgers for the children. She eats nothing. Asleep in our bed at the back of the house she wakes every half hour and throws up. She asks for water, but it comes right back up. In the morning, she begins vomiting long streaks of bright-green bile. When I change her soiled pajamas, which should be soaked because her skin is hot but are not, the rash has melted together into an angry range of welts across her trunk and back.

  It is raining again. In the parking lot down the hill, I am on the cell phone to New York. For the first time, I lose my temper when talking to a doctor’s office. Told, “The doctor will call you back,” I begin to scream into the phone, No, he will not call me back, you will get him, now. I know this is a bad idea. After a long time, the receptionist comes back to the phone. All the doctors are with patients. By now, I am crying. I tell her we have been patients in this practice for a decade, that I’ve never made such a phone call before, that I know exactly what is going on in the office—there are two kids with ear infections and five kids waiting for school checkups—and she is to get someone right now. Dr. Lazarus comes to the phone.

  We return to Provincetown. It sounds to New York that she’s lost so much fluid she may need to be hydrated. How will Provincetown know? They’ll look at her, they’ll know. When we get there, they call an ambulance.

  Inside the ambulance, it’s our old friends from the Rescue Squad. Should we have taken her to the hospital on Tuesday? They check her vital signs. This includes pressing her finger until the flesh under the nail turns white, and counting how long it takes for it to flush pink again. It takes too long. She’s not getting enough oxygen. Or maybe just enough. Just enough isn’t okay. I’m given a choice: either she can hold—or I can hold—a green bear that will breathe pure oxygen into her face or an oxygen mask will be put on over her face. I choose the green bear.

  I’m kneeling next to the car seat, on the floor of the ambulance. The green bear starts to work. The technician has a last name—Silva—that’s common in Provincetown. Is she a local girl? “You bet I am,” she says. “When I was in high school, I couldn’t date—everyone was my cousin.” She has two kids. Last weekend, the two town ambulances made fourteen trips, a record. Looking down at my own child on the stretcher, I notice two things: the whites of her eyes are bright red, and the fingers on both hands look scorched, as if somewhere along the way she’s burned herself.

  In the emergency room, the technicians slide her onto a bed. Good
-bye, good-bye. I am alone. Her father has followed the ambulance in the station wagon. When he explained in Provincetown he wanted to do this, it became immediately clear that he meant that literally: behind the ambulance, at ambulance speed. He was dissuaded. So he has driven, at a moderately reasonable pace, on the highway, but he’s not here yet. A covey of nurses has gathered around her, and they insert an IV into her left hand. She is screaming. Then the ER doctor comes in. He is a man my own age called Nate Rudman—a familiar name. Do I know him? I knew a Seth Rudman in high school, I know a poet called Mark Rudman. Nate comes up blank. She is calming down on the bed. By now I am quite sure I know what is wrong: the little boy next door in New York had been exposed to Coxsackie virus, a minor, irritating, childhood malady. Before we left, it was going around the neighborhood. I am very busy being sure. I am relieved: the proof is her inflamed hands. I inform the doctor, Nate Rudman, that she has Coxsackie virus, but he pays no attention to me. He is gone from the room. The nurses flutter like pigeons. He returns. I tell him again about the boy next door with Coxsackie. No, he says. She does not have Coxsackie. His exact words are: She doesn’t have Coxsackie disease. She has Kawasaki disease. It will take two weeks before I can say this properly. Excuse me? This disease, he says, is the primary cause of acquired, potentially fatal, coronary aneurysms in young children.

  The blue room turns green. I am standing by the side of the bed. The bed has a bar. I hold on to it. A chair materializes. I sit down on it. Once, when I was a girl, I dove deep from a high bank covered with damp moss into a deep lake, and my mind went blank in the black cold water. I was wearing a Speedo bathing suit. I surface now into the brightly lit room. Before she was born, before we decided to have a child together—she is the first child of our marriage, and the only one—I thought, we are too happy, we are asking the evil eye to come among us. Kenaharah, my grandmother would say, if we were too much praised. Don’t shine too much light or the Devil will see. The Devil is like a moth—he is attracted to light. When the children are admired, I instinctively deflect it. Pretty is as pretty does, I say. Stop reading twigs in the forest, you idiot Russian, my oldest friend laughs at me. But now it has come to pass.

  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.