Preface and Disclaimer: The following is an account of one family’s experience with a complex childhood malady. It is in no way intended to represent universal facts about anorexia nervosa, infantile anorexia, or the diagnosis known as failure to thrive. It is published here as a gift to Regina, whom I “met” last year when I was researching hunger and who opened her life to me with extraordinary generosity. Any errors in the science are mine; any truths you may find in it are due to her honesty. I hope you find Regina and Eicca’s story as compelling as I did, and that you approach it with respect.
You think of hunger as a panther with a step like snowfall, prowling at the edges of your sight. You think of hunger as an itch yawning across your skin, demanding to be scratched. You think of hunger as a man cracking a whip, and you its slave. The way you know hunger is the way you know pain, the way you know fear, the way you know love: as a force that inhabits the body. It lives in the spasming of muscles in your gut, the strange internal seething of gases and fluids. You do not think of hunger as something you must find—like a lost ring buried deep beneath a sofa cushion. Like a little boy gone astray.
The sensation we recognize as hunger is the result of a deft physiological machinery: invisible to us, but nevertheless highly efficient. Dozens of chemicals of varying importance are believed to be involved in the complex play of reactions that results in the arousal of appetite, not all of them yet identified by science. A few central pathways, though, we can describe with reasonable confidence—a few guides for those who seek to find.
Here is one, for example. Go long enough without eating, and cells in the gastrointestinal tract secrete a chemical comprising a single chain of 28 linked amino acids, first discovered in 1999 and known in the scientific literature as ghrelin (but immediately christened “the hunger hormone” because of the role it plays as a messenger for an empty stomach).
Ghrelin seems to work by stimulating specialized receptors at the end of an abdominal branch of the vagus nerve: a bundle of fibers that wanders a remarkably long and complex path through the body and connects, at its zenith, to the brain. With these receptors activated, a signal vibrates up the length of the vagus nerve until it reaches an appetite-controlling center in the hypothalamus. The message it carries is as simple as it is insistent: We’re running on empty!
And then, before you know it, there you are. Losing your train of thought. Feeling saliva prickling at your mouth like tiny bees. Arrested by the memory of a particular sandwich you once ate in a restaurant in Boston, sweet with cranberry chutney and salty with Havarti cheese that melts like cream on your tongue.
This is how it works, how it’s always worked. You are born with the blueprint for hunger tattooed onto your cells, an appetite for food that is inseparable from the appetite for life. This is how it works—until it doesn’t.
It is an icy January day in Oulu, Finland, on the eastern shore of the Baltic sea, when the most wanted child on earth is born. His safe arrival has been a long time coming—following, as it does, eight years of attempts to conceive, four intrauterine inseminations, two cycles of in vitro fertilization, one miscarriage, and 38 weeks of anxious pregnancy. The mother of the most wanted child on earth touches her son’s warm cheek: soft as a rising bun under her finger. She whispers his name: Eicca. She whispers munkki, my little munkki: the Finnish word for doughnut. She thinks: I have loved you from all time. She does not know that, in one way at least, this baby is incomplete: he has come into the world without his hunger.
When Regina is hungry, it is the junk food she grew up on in San Francisco that tugs at her thoughts. She dreams of Cheese-Its the crackling color of a neon traffic sign, Carl’s Jr. fries that leave a film of hot, delicious oil on her fingers. She has an especially fanatical affection for the sweet-salty taste of Reese’s Pieces. But because she has always been overweight, Regina usually tries to hold herself in check. In time, she will wonder about this. Could her own lifelong struggle to combat what sometimes feels like an immoderate hunger somehow have affected Eicca’s appetite? Could he have inherited a subtle, invisible disposition to quell his hunger? These questions, when they come, will be at once utterly absurd and completely irresistible. But that will be later.
At 27 weeks, Regina is nervous. The time has come for her to take a glucose challenge test to see how efficiently her body processes sugar. Because of her weight, she is at a high risk of developing gestational diabetes, a temporary form of high blood sugar that only occurs during pregnancy. It doesn’t usually threaten a pregnant woman’s health, but if left unchecked gestational diabetes can lead to problems for the baby she carries, including jaundice, excess growth, or respiratory distress. The night before, Regina and her husband Marco sit together and eat an entire box of chocolates, piece by piece. If she fails the test, Regina reasons, this will be the last time in months she’ll get to indulge her sweet tooth. She had better savor this night while she can. The Finnish chocolates are no substitute for Reese’s Pieces, but she is nearly seven months pregnant and she is hungry and she is not ashamed to say that they are good. When the box is empty, Regina laughs. She puts her hands on her belly, full of chocolate and Eicca. Then she fasts for ten hours. By the time the little cup of glucose slips past her lips, she is starving. But she passes the test with flying colors.
For Regina, as for most of us, food is temptation and memory and indulgence and pleasure, all at the same time. This is how it works, how it’s always worked. This is how it works, until it doesn’t.
In retrospect, the signs that Eicca’s hunger is missing are present almost from the start. At Regina’s breast, he drowses instead of drinking. When he does suckle, it is slow and fitful, and very quickly he stops, turns his head away, and falls asleep. It is as if eating is a pointless tedium instead of what it should be: the central occupation of his life, the drive behind the doubling of his cells and the development of his brain, his heart, his reaching fingers.
Even when he has gone three or four hours without feeding—the length of time it takes most infants’ stomachs to empty to the point of discomfort—Eicca shows none of the behavioral marks of newborn hunger described in a set of child feeding guidelines issued in the European Union. No increased alertness or activity, no rapid eye movements, no hand-to-mouth and suckling motions, no soft cooing or sighing, sucking sounds, no fussiness. Watching Eicca as time stretches out since his last sip, the last second is the same as the first. At night, it is the sound of her alarm that startles Regina awake for feedings; Eicca never wakes or cries for food.
You do not think of hunger as something you must find.
Soon, Regina and Marco switch to feeding Eicca bottled breast-milk, supplementing it with a store-bought formula. Even so, at five weeks he is drinking less than seven ounces of food every 24 hours, a fraction of the recommended daily intake for an infant of that age. But since he is growing, if slowly, Regina puts aside her concern.
At seven weeks, a nurse comes to the house to check on Eicca and weigh him—standard practice in Finland’s universal health care system. Though all seems well at the appointment, the next morning brings a call—the voice on the other end of the line brooding and uneasy.
“I’ve been up all night worrying about your baby,” the nurse blurts out.
The word anorexia literally means “without appetite;” but for most adolescent or adult sufferers of the disorder the label is precisely false. What studies of women with eating disorders show is that ghrelin levels in the blood plasma of anorexics are significantly elevated compared to healthy subjects—and they don’t drop after meals as in normal controls. The findings help to explain why many anorexics, especially in the early stages of the disease, report feeling an almost constant sensation of hunger. Besides a distorted view of your own body, this might be one of the deepest reasons for someone to deliberately lose an appetite—to push it deep beneath the cushions—the fear that if you once began to eat, you would never stop.
It’s clear, of course, that this terror is groundless—pathology, not prescience—but it has an ancient precedent. We have lived for millennia with a dread of the hunger we harbor. In Greek myth, when the mortal Erisichthon strikes down an oak tree beloved of Ceres, she sends Famine to breathe herself into his veins, like poison, as he sleeps.
When he awoke, his hunger was raging…What would have sufficed for a city or a nation was not enough for him. The more he ate the more he craved. His hunger was like the sea, which receives all the rivers, yet is never filled; or like fire, that burns all the fuel that is heaped upon it, yet is still voracious for more….at last hunger compelled him to devour his limbs, and he strove to nourish his body by eating his body, till death relieved him from the vengeance of Ceres.
Inhabited by this ancient fear, anorexics train themselves to master hunger. Some even grow to love the painful, drawing sensation of an empty stomach for what it represents: a virtuous triumph over desire. One textbook on anorexia quotes a patient whose symptoms first began at 17. The immediate effect of self-starvation, she explains, “was a feeling of exhilaration verging on euphoria. The hunger was hell…but the hell was far outweighed by the reward.”
You think of hunger as a man cracking a whip.
When anorexia occurs in infants, its rewards—if they exist—are much harder to understand. First described in detail by pediatric researchers Irene Chatoor and James Egan in the 1980s, infantile anorexia typically makes an appearance when a child reaches 3 to 6 months of age, a critical point of transition between bottle-feeding, spoon feeding, and self-feeding. The disorder originates, Chatoor has asserted, in a pattern of maladaptive interactions and conflict between an infant and his or her caretaker, and reflects a young child’s growing struggle for independence. “The infant refuses to eat in an attempt to achieve autonomy and control with regard to the mother,” she wrote in 1989, “a maneuver that serves to involve the mother more deeply in the infant’s eating behavior and to meet the infant’s need for attention. Mother and infant become embroiled in a battle of wills over the infant’s food intake. The infant’s feeding is directed by his emotional needs instead of physiological sensations of hunger and satiety.”
While this description doesn’t fully explain the source of Eicca’s troubles—which start much earlier than those of the infants in Chatoor’s studies, and seem almost congenital—its dour pronouncements seem to grow more accurate over time, as a vicious circle of insistence and refusal forms. The more preoccupied Regina becomes over her son’s lack of interest in food, the longer and more fraught mealtimes become, until she is literally trapping him into his chair with one stiff, outstretched arm while she spoons carrots and peas into his mouth with the other. While he screams. They are on vacation in Hawaii, the air coming through the windows fragrant with frangipani, and every morning it is on the schedule. Force-feeding Eicca in paradise.
Though infantile anorexia is considered a psychiatric disorder, it is not infrequently associated with physical conditions like gastroesophageal reflux disease, the abnormal tendency for stomach acids to flow backwards to the gullet and cause food regurgitation. By the time Eicca is six months old, he is vomiting as often as ten times a day, sometimes several times an hour, despite being on Zantac: a powerful ulcer medication designed to block acid production in the stomach. The air in the apartment acquires the sharp, sour smell of vomit; you can smell it as soon as you walk in the door. At last, driven by a kind of exhausted pragmatism, Regina begins feeding Eicca in the bathroom, watching him closely in the mirror for signs of an imminent purge. When he throws up, she holds him over the bathtub, tears streaming down her face as the hot milk splashes onto the sleek porcelain. Then she wipes him clean and tries again.
In early 2009, just before Eicca’s first birthday, he and Regina move into a tiny room at the hospital—Marco, who has to work, sleeps there with them at night. Every day, five times a day, for three weeks, three pediatricians, a gastroenterologist, a speech therapist, and a bevy of nurses orchestrate Eicca’s feedings. They film him eating. They time his meals. They measure and record what he consumes. And all the while they watch him for signs of hunger or aversion, like wildlife biologists encountering a new species. Some days are good: once, Eicca consumes 100ml of milk, 50ml of blackcurrant soup, 80 spoonfuls of pureed mango yogurt, meat, and potatoes, 20 spoonfuls of porridge, a few bites of cheese, and the corner of a piece of bread. Regina cannot believe her eyes.
But mostly, meals are just like they are at home. The very next day, he eats nothing except for a few bites of pear, a few bites of bread, and a few sips of milk. At the end of three weeks, Eicca is still turning his head away from food. He has lost one kilogram.
Sharman Apt Russell, author of Hunger: An Unnatural History, explains that motherhood made her searingly alive to the improbability and injustice of a hungry child: “I gave birth to my daughter and fed her my body. Later, I had a son and he, too, drank from me. I was feeding the world. This was not aggrandizement so much as myth. At the center of our life, we are Eve or Prometheus or Odysseus. At the center of my life, I fed the world, and yet children were dying.” At the center of her life, Regina offered her son the world, and he refused it—would, if she hadn’t fought with him, have died for lack of all she had to give. The improbability, the injustice of this.
The Oulu University Hospital doctors who counsel Regina and Marco about Eicca have a mantra. They will repeat it over and over through the months and years of hospital visits, say it so many times that hearing it will make Regina want to scream. You must let him find his hunger, the doctors insist. Just give him a chance and he will find his hunger. As if Eicca’s appetite has been accidentally misplaced, forgotten in a corner like one of the toy train cars he loves to race around the house. As if sooner or later he will simply realize that he needs it, this hunger of his, and go looking. As medical advice, it borders on the magical. But—at least for the moment—it is all that science has to offer.
As he gets older and continues to show almost no interest in food as a source of pleasure, Regina and Marco sometimes resort to spooning butter into his mouth, letting him dip both hands into a jar of pure sugar and smear the grains onto his tongue. The rules of healthy childrearing that normal parents set for themselves—give your child lots of proteins and vegetables, keep them away from junk food—are nothing but mythology. When Eicca is two years and seven months old he falls briefly in love with a particular brand of Finnish shortbread cookie, stuffed with a hazelnut cream filling and sprinkled with chocolate chips. Regina is overjoyed.
Love, of course, is relative. Falling in love, for Eicca, means he will cry to have a package opened, then eat one tiny corner of one cookie before turning his head away. And yet it is a blessing. A glint, perhaps, of some lost bright thing that might someday be found.