Chapter 1 - It's dawn when I first hear Anna's silence. The midwife is holding up my daughter, the cord between us not yet severed. She's fully formed but remarkably small, dangling in the first amber light of the sun. The tower of the hospital chapel is sounding out the tones of the half-past-five bell. My baby remains soundless, suspended--but she's alive, I can tell. She's looking at me intensely. She is black-haired and black-eyed. I know her name already. My husband isn't there. The midwife motions for my mom to cut the cord. My mom takes scissors to the bluish rope, then places my child in my outstretched arms. For a few seconds, I'm allowed to hold her to my chest, where I can feel the deep, repeating throb of a mallet hitting a gong. Then a doctor is called. Someone slips Anna from my hands. She's brought to the corner where people huddle over her. Towels jostle her form. "Is she okay?" I ask, again and again. Then, like a pierced bubble, her scream breaks free and fills the room. "She's okay," the doctor or the midwife says. "But she's only five pounds." The space changes due to her sound. The pace quickens, the shades grind up into their rectangular sockets, and now the light is a raw, painful white. A nurse demands I eat a package of graham crackers and cheese. I've had no drugs for Anna's birth, and the intensity of it is still strobe-lighting the room. I do as I'm told. Then I'm helped to a wheelchair in my nightgown, which is bright red with purple satin trim. I look a little more regal than I'd planned for an event that has destroyed me like this. The nurse brings Anna to me, swaddled. Her hat is too big, with tiny stripes and an oversize bow. My mom appears, holding out my phone, and says, "You need to call Luke." My husband is asleep on the fog-embalmed island in Southeast Alaska where he fishes for salmon from May to September. It's three a.m. there. But he answers. "I'm holding our baby," I tell him. "You are?" he responds, the sleep still like gravel in his voice. "Is everything okay?" "Yes," I say, "but she's small." "I'll take the first flight tonight," he replies. Anna is quiet. Her eyes, on mine, are shiny. The nurse rolls us out of the room and into an empty tiled hallway. "Hear that?" she says. "They're playing that song for your baby, for her birthday." The song is Brahms's "Lullaby." The beauty of the violin is a blade, cleaving me to pieces. I'm so proud, I can barely breathe. - The recovery room faces west. When the pain recedes enough, I leave the bed. I sit in a rocking chair by the window and look alternately at the bruise-colored line of the Rocky Mountains against the sky and Anna's brand-new moon-white skin. Her head is the size of a grapefruit, still wet. Her hair is matted down in tiny dark swirls. And her eyes, in this light, are magnificently deep and huge, with tentative rays of gray reaching from her pupils into an oceanic blue. During those first newborn hours when babies can be spacey and sleepy, Anna stays awake. There's something different, even foreign, about this child, like she might contain something that isn't quite ours. Luke calls again. He's on his boat now, squeezing in one last day of fishing so we can afford for him to come home. I can picture him in his orange fishing overalls, the white sky, his silver boat, the rolling black sea. Mountains in every direction, like they might be able to stop the colossal heaving of the ocean. We'd planned it this way months earlier--for Luke to be in Alaska and me to be in Denver--knowing he would miss Anna's birth. I'd had an unexpected C-section with Zaley, my firstborn, and the recovery had nearly undone me--the feeling of swollen ropes in my abdomen, the painfulness of laughter, the inability to walk around the block for nearly two months. For my second, I wanted a chance at a nonsurgical labor. The OB in Sitka had said no, when I'd called from Colorado, still pregnant with Anna. I could not try for a vaginal birth, he said, even though I pointed out that it posed the same risk for me, statistically, as any woman having her first child. It seemed I understood my risk better than the doctor. And yet I would be the one held accountable for endangering my baby. He would be happy to schedule my second cesarean. For the first and only time in my life, I preferred Luke's absence: I couldn't have this baby in Sitka, where he'd be fishing seven days a week, and I'd be recovering from an operation on a remote island with a nursing newborn and a toddler whose favorite phrase was I want to do something! And while it would have been illegal to force a laboring woman into surgery, I took the OB in Sitka seriously. I respect doctors, I tend to be obedient to authority, and I didn't yet think of motherhood as an authority of its own. Over the phone, I can hear the clang of Luke's rods going into their stands, the beep of his radio when he powers it down. "Her name is Anna," I tell him. "Anna Ruth." Anna means "full of grace." And it's June 19--my grandma Ruth's hundredth birthday. My dad is in Chicago for her birthday party. There's a pause as Luke's calm, deep voice covers the country between us, and then he says, "That's perfect." Everything's perfect except for the feeling that everything isn't. - Since the 1960s, the public health department in every U.S. state has required that newborn babies, within the first few days of birth, be tested for a battery of diseases and disorders through their blood, which a nurse extracts from the infant's heel with a tiny stapler-type tool. Those first bulbs of blood are then stamped on an index-size card and compose the Newborn Dried Blood Spot, commonly referred to in medicine as the DBS. Once the baby's heel has yielded enough blood for five hole-punch-size circles, the card is transported to a lab, where the presence of thirty-some childhood illnesses is assayed. Diseases like phenylketonuria, maple syrup urine disease, cystic fibrosis, and sickle cell anemia are identified by the test, their names already a part of the medical canon, no matter how few or how many children they affect. When Zaley was born in 2012, I was not prepared for this taking of her blood. I didn't expect to see her bleed until she was older--a child mobile enough to fall. The DBS doesn't require a parent's written consent, and no one offered to explain it, either. This conversation is absent for nearly every woman holding her newborn child. When I offered Zaley's heel to be punctured, it was the first time I wondered if my lack of knowledge implicated me in my daughter's pain. Holding Anna now, I realize I'd forgotten to look up the test and its diseases. I ready Anna's bone-colored foot. I love this appendage to a ridiculous extent already, the sheen of her pearly heel, her raisin-size big toe. A nurse pops it with the blade. Anna screams. Not enough blood comes out--her veins are too small. The nurse squeezes again till the foot is a furious purpled web. Then on the underside, the blood appears, pinprick small, and the nurse presses it down on the card. The nurse leaves with the newborn test, and I never see her again. I never see the blood on the card again, either. When I picture it today, it's in a landfill or a dark hospital basement, nearly turned to dust, even though the specimen might hold a clue to the unexplained disabilities of millions of children around the world. - The rotating doctors arrive next, and they seem weird. They always come in sets of two. They're pediatricians from Children's Hospital, they say, and they congratulate me, but their tone is noncongratulatory. They carry clipboards, poised. One takes Anna to the plastic-walled bassinet, which is near the window. (I am so instinctively protective of her body, I won't place her in it at all after her birth.) One of the doctors indents Anna's abdomen, the other one frowns. No one offers the possibility of disease. I'm sitting up, chipper--So? Everything okay?--believing that the perkier and less emotional I seem, the better care I will receive. But they just look up like they're surprised to see me, then one smiles tightly and nods and says, "She's a beautiful baby." She is, but she's also more than that, I can sense. I just don't know what question to ask. When they leave, they sound like shoes, and the door latch clicks with finality. They won't have answers. They might not come back. I'm hungry. I order room service like a queen: fat, mayonnaise-filled sandwiches with fries on the side. Vanilla pudding and redundant Jell-O that jiggles happily when an aproned lady rolls the tray into my room. Anna has no rash, no seizures, no outward trouble breathing. There's no red flag, except the one inside my sternum, which feels like a damp fabric, flapping wildly, unseen. A nurse comes in and washes Anna's ink-black hair over the sink. When she hands my child back to me, her head smells warm, like sugar cookies and soap. But her eyes are sharp, boring into me in a language I don't yet know. - In the late afternoon, a young woman rolls the second requirement of the newborn screening program into the room: The hearing test cart contains a baby-holding tray and a computer with wires sticking out of it that will go inside Anna's ears. These electric earbuds will emit loud clicks, prompting an instinctual response in Anna's innermost ear if she can hear sound. Up until the 1990s, most children didn't have their hearing checked in the hospital; deafness often went undetected till the age of three or four, permanently altering the way a child's brain could form and communicate complex thoughts. But when Anna is born, in 2015, 98 percent of American infants will have their hearing tested before they're discharged, since hearing loss is the most common irregularity in infants from birth--and frequently a sign of systemic disease. Unbeknownst to me, the unassuming metal cart in the room is evidence of something I will strive for during the rest of Anna's early childhood: proven research leading to major policy changes in pediatric public health. The hearing technician inserts the wires into Anna's ears and tells me the test will be quick. I remember the test from Zaley's first days. But this time I know Anna will fail. It's as clear to me as the fact that labor produces a child. The woman puts her hand on Anna's chest to steady her as she starts the test. I hold my breath, trying to create an even deeper silence than the one that exists. I can hear the muffled clicks and see that Anna is falling asleep through them. After a few minutes, the technician pulls the cords from Anna's ears. Then she gently swaddles Anna while I wait, almost out of air. Only when Anna touches my hands does she say, "I'm sorry, but she actually failed on both sides." Anna is looking at me. I have nothing to give her, no explanation, no voice. The hearing technician says she will retest the next day, and if Anna doesn't pass that one, I need to have her tested again in a week. She gives me no hope that Anna will be able to hear--which I appreciate later--just the information the wires have given her: sound met with silence. The technician leaves, and Anna and I lie in heavy quiet, the bale of my anxiety like weighted oxygen all around us. - In Susan Sontag's Illness as Metaphor, she writes: "Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place." Before having Anna, I conceived of health and sickness as Sontag presents them: two territories, the second of which I would reach on my own two feet--through old age, or an unexpected diagnosis that would be mine alone to bear. But in those first hours of Anna's life, her silence beckons me to a third place: the border between health and sickness where we will live together. This feels like foreign soil. The American prenatal system did not prepare me, as an expecting mother, for the possibility of a disabling contagion. My OBs and midwives had implied that genetic testing and a healthy lifestyle were the best practices of pregnancy, that the twenty-week anatomy scan would reveal any complications, and that the list of disorders in their paperwork was comprehensive, would leave no large stone unturned. Luke and I were healthy, we had no history of medical conditions in our families, and it was the fall of 2014: we were--as yet--a country largely unbothered by the risk of grave infectious disease. Viruses that threatened all of humanity were a thing of the past, I'd thought, and if they leaked through our borders, it was in small, combatable numbers, as with fleeting outbreaks of measles, Ebola, TB--fairly nonthreatening flare-ups, quickly squelched by a trustworthy (but vague) public health system designed to prevent and protect. As for epidemics in American children, those belonged more to the realm of fiction than to real, current-day life. These kinds of plagues happened only in centuries past, in the pioneer literature I had read as a child and would later read to my kids: malaria in Little House on the Prairie, scarlet fever in Little Women--both diseases so rampant as to be expected, and that presented with symptoms the parents could see. No, an infectious disease simply does not occur to me while I'm considering Anna's anomalies; she has only lived inside me, where things had been handled appropriately. Like any well-read woman in the twenty-first century, I'd understood the fundamentals of pregnancy: no kitty litter (it can carry toxoplasmosis), alcohol (which can cause fetal alcohol syndrome), lunch meats (which carry listeria, very rarely), or sushi (due to high levels of mercury). Aside from these standard no-no's, I figured if I needed to worry about something contagious and dangerous to her gestation, then my doctors, the CDC, and the internet would have warned me. Excerpted from Remedies for Sorrow: An Extraordinary Child, a Secret Kept from Pregnant Women, and a Mother's Pursuit of the Truth by Megan Nix All rights reserved by the original copyright owners. Excerpts are provided for display purposes only and may not be reproduced, reprinted or distributed without the written permission of the publisher.
