from My Head Is an Animal
Of Monsters and Men
“Howling ghosts they reappear
In mountains that are stacked with fear
But you're a king and I'm a lionheart
A lionheart”
Forward.
The song is set on repeat. The infant, though scarcely a foot long, shifts inside its mother, resembling a mouse under a carpet or small mogul. The mother’s skin accommodates, for the nudge reassures despite its inconvenient timing, far into the night when she would be sleeping. Everyone else is sleeping, but this does not make her feel isolated or lonely. After all, she’s not one, but two beings, each with a heart, a brain, and two lungs. From a paper cup on the tray, she takes a sip of Sprite. A wonder, how this clear, nutrition-free liquid will turn to milk. But not yet.
Back.
The contractions begin early and real. Not unusual for a woman with three previous pregnancies and strong Braxton-Hicks—but worth an ultrasound at the hospital, half an hour away. The examination room too cold, the frigid gel shocking her belly, the probe shaped like one of her pink rubber erasers from elementary school. Kind of a miracle how sound and echoes are transformed to data then image, a printed copy of which the parents can take home with them. Their baby wobbles around on the black and white monitor like a lava light. At which point they discover it’s a boy, quiet electricity circulating the room (all the other children are girls).
There’s no time for celebration however. The tech excuses herself and a specialist steps in to report there’s suspicious fluid around the baby’s heart, in the abdominal cavity, and more in the shape of a dark sickle moon above his head. It’s called Hydrops, an “edema in at least two fetal compartments,” though it might be the name of a Greek demon too. Will the monster drown the little King?
After three Fetal Maternal Medicine doctors weigh in, it becomes apparent they really aren’t sure what is happening here. One concludes the anatomical survey was essentially normal and the baby just has a virus; another says it’s a chromosomal disorder with a 50/50 chance of live birth—a huge range, leading the father to hunt down likely etiologies online. To some, this might seem unwise, but considering the prospect of death or lifetime care of a disabled son, medical research might serve as a distraction, or mourning, or even a balm.
The song blasts from an SUV’s cheap speakers. The grandmother dislikes it at first, and says so. What it does for the mother she doesn’t understand. The band is from Iceland and, true, she longs to wander through those stark landscapes and seaside villages with their brightly painted dwellings. But the lead singer Nanna opens with a popcorn soprano: “Taking over this town, they should worry…” each syllable pricking the air. Her accent is heavy too and the only line the grandmother can decipher is: “That we won't run, we won't run, we won't run…” Three chances to capture three words.
Forward.
Several days later, the mother is again called in. With held breath she’s monitored, poked, and scanned. And yet, there’s good news: the fluid level appears to have stabilized. So let’s do this outpatient, says the doc. “Cautiously optimistic,” she’s sent home. At the next examination, his optimism is confirmed; the fluid is reabsorbed—an excellent outcome. The whole family exhales.
Back.
Prone on the couch, the mother rips out her ear buds and the song retreats to a metallic squeak no one can read. She has to be sure. How long since the little one stirred? It feels like ages. Even when she presses deep into her belly, she feels nothing: no flutter or primordial roll of the baby’s shoulder. And this was an active kid. There’s plenty of room to flip and kick, so the lack of movement is worrisome. The father borrows a home Doppler kit. A normal fetal heartbeat at thirty-three weeks averages 120-160 bpm. The machine reads over three hundred. He checks again; can’t be right. Maybe the Doppler is broken and picked up the mother’s heartbeat too. They wait for the appointment next morning. Again, older kids stashed with the grandparents. Suitcase packed just in case. The same chilly examination room, monitor, and icy gel, the tech waving her wand back and forth setting in motion that ultrasound magic. After two or three minutes she cuts short her pleasant chatter, exits into the hall to alert the resident physician. The Doppler was correct; his heart is beating at least twice the normal rate. The baby’s in SupraVentricular Tachycardia, or SVT. That word— tachycardia—could be a monster or a dangerously swift dinosaur.
What follows is a stream of specialists. For the mother and son—high-risk FMM doctors in addition to her regular OB/GYN. For the infant—Neonatologist, Pediatric Cardiologist, Neurologist, Cardiac Electrophysiologist. A quick decision to force the birth, to cut and lift the infant out of the mother’s abdomen like a leg of lamb.
What does the infant see, if anything, when the shell cracks open and light blares? What does it feel like when the heart’s in SVT? The baby cannot speak, though adults with the syndrome have described a palpable flop or hiccough to start things off then suddenly the race is on, accompanied by vertigo, weakness, neck pulsations, and sweating. It’s been compared to a sustained panic attack and the mother can tell you about that: a tidal wave of fear, elevated pulse rate, hyperventilation, usually resolved by breathing into a paper bag. Better yet—husband, grandmother, or sister to hold her, to make real that species-wide sensation of safety in enclosure.
Again she screws in her ear buds—counterclockwise—securing a seal, muting the buzzers, bells, and visitor voices. “King and Lionheart,” from the album My Head Is An Animal, carries her back to the ordinary expectations of pregnancy: steady growth, healthy pulse, and assurance of a normal birth. It’s the only music she can listen to continually, the rhythm and voice and strum in direct contrast to her son’s out-of-sync beat. If this were a fairytale, the lyrics might be sorcery, stabilizing his heart, making everything all right. “We’re here to stay, we’re here to stay, we’re here to stay.”
There’s a light knock. The FMM surgeon slides in. On his first visit, he wore street clothes, thick black-rimmed glasses, and a wavy 70s haircut. His shoulders hunched, frame rather slight. Not reassuring at first glance. Now he’s Superman, upright in scrubs, muscles bulging in his sleeves, gold cross on a chain to summon his god and banish those demons. He’s the perfect candidate to rescue a preemie in distress then fly off into the sunset after a long, gory battle won single-handedly. They look up his profile and, sure enough, Superman did his fellowship and residency on a San Diego naval base. He was in the military. Okay then.
On the gurney, she feels a little kick and asks, hopefully, is a C-section really necessary at this point? Without comment, the surgical nurse slips a hairnet over her patient’s long hennaed hair and surrounds her with paper sheets in preparation for the epidural. She scolds, Oh, it’s not that bad, now, is it?
Stupid woman, it’s not the needle making her cry; it’s the baby. Fortunately, a second nurse nudges the mean one aside and wordlessly cradles the patient between her enormous breasts.
And what is the family thinking, confined to a cramped waiting room, the magazines untouched, the television on mute? Oh, it’s just another Cesarean, her third. Needn’t worry. But the grandmother was present for the other births and this time his status is high risk and she’s ousted from the delivery room. No one is talking much and she can’t sit still, so she hunts down a Dr. Pepper, her daughter’s soda of choice. Down the elevator to the lobby and the gift store is locked. At ten a.m. on a Monday? What if there’s news and the doctor is there and now she’s missing it? Up the elevator to the second floor through an endless corridor with its clever sign showing the precise number of footsteps to the cafeteria. But will he be okay, will he crawl, stand, cruise, walk, even run? At the base of the escalator are three vending machines with Cokes and Sprites and Dasani water, nothing else. Oh please. Need to get back. Taking too long. She fills a cup with ice at the fountain but the tab for Dr. Pepper is broken. And the baby could be stillborn and the family would be broken. And the muffins look terrible and the shampoo her daughter requested is out of stock in the hospital’s gift shop. Now she remembers, and the worst part of the song cycles through her head: “Howling ghosts they reappear/In mountains that are stacked with fear…” She tries to shrug it off—he’s no ghost; he’s not even born yet.
At least there are three other children.
Some physicians have a script, their communication so practiced it feels both weightless and consequential, like screen doors you swing out of the way before putting a hand on the door. But this FMM physician is vibrating in her wrinkled white coat. Your baby is very sick. We don’t know what’s wrong with him. What she did not say: the child coded twice, once for forty-five seconds. As the mother’s recovery room is in the adjacent hospital, accessible by an enclosed glass walkway, she’s unaware of at least two heroic efforts to revive him. The gray-blue skin and rapid chest compressions because paddles will not do. Two IV lines, one for the “big gun” medicine Atropine, the other simple saline injected simultaneously, speeding the drug to his heart. Watch it on a monitor, flat line cresting on the ECG like a shard of glass.
The baby is a long way from deep-chest laughing; from the breast milk bond and dopamine that relaxes both mother and child; a long way from sashaying in his father’s arms, back and forth, round and round. He’s tucked into the apparatus—a clear plastic bin sterilized just that morning. A cloth over his eyes is folded and anchored by tape to a horseshoe pillow securing his head. He wears a vest of wires and pads strapped to his chest like a suicide bomb. The bag of fluid is nothing like lactation and a needle and tube are poor stand-ins for the nipple.
The father’s heard the near-death story, but wisely holds it back. The mother will not know the details for weeks. No one mentions the buzzers and urgency, the scuffle of nurses and physicians, their own pulses rising as the infant twists and jerks. She’ll be grateful for the ignorance, even if it’s ignorance without bliss.
The best way to cradle an infant is skin to skin. Rocking imitates the motion of amniotic fluid. It’s common knowledge that a lullaby coaxes a baby to sleep, slowing the child’s heartbeat and breath. These songs are generally simple and repetitive, with a 6/8 beat—a nice balance of boring and just interesting enough to capture the child’s attention. NICU studies show that preemies exhibit less stress during IV sessions when music is played and, over time, they gain more weight. Adults can be similarly bewitched by a smooth-coated voice, or a spoon stirring in a teacup. A hypnotist will swing a watch back and forth till the patient is under. Even animals will go there, needing little to induce a trance. A basset hound slinks in slow motion under a Christmas tree, ornaments lightly grazing its back, and other dogs brush against tablecloths, hung laundry, or houseplants. It’s called “ghost-walking,” or simply, “trancing.”
Hospitals now offer a variety of nonstandard therapies, including massage, increased attention to diet, and engagement with art. In Louisville, there’s music therapist Brian Schreck, who pioneered a treatment for terminal patients and their families, calling it “Sounds of Life,” though the medical names—heartbeat intervention, or music therapy cardiography—are more precise. Schreck is no amateur. He studied music at Berklee College of Music and New York University. Mostly, he works in the NICU, PICU, and CICU, recording the patient’s heartbeat and then composing a song on his guitar that follows its rhythm. The whole family participates as he revises and polishes, moving towards a kind of survivor’s lullaby, one they can return to repeatedly after the loved one has passed away. The songs are stirring, the cadence warm and insistent, as if we’d put an ear to the patient’s chest. It makes me wonder why no one has thought of this before.
But “terminal” is not an acceptable word for this mother. Besides, she’s already chosen her song. It’s a pity she doesn’t want to be touched, for she too could be cradled, should be. Instead she swallows the soy vanilla latte, savors the oatmeal her husband brought from Starbucks—her made-to-order comfort food. A hypnotist will speak in a soft, authoritative voice and this is what the mother hears as she listens to her song: “And in the winter night sky ships are sailing, /Looking down on these bright blue city lights…/We’re here to stay.” She is momentarily mesmerized, carried away from the medicinal scents and surrounding apparatus and fear of mortality. A dense fog moves into her brain as…
At last there’s a diagnosis: Wolff Parkinson White syndrome, named for Louis Wolff, John Parkinson, and Paul Dudley White who mapped its electrocardiogram findings in 1930. Extra neural pathways confuse the heart, causing it to overcompensate with supraventricular arrhythmias, pre-excitation, and recurrent tachycardia. Milder versions have occurred in the husband’s extended family. Surely the neonatal doc questioned them? Genetics is a boon for the diagnostician. For the patient, a harness held taut over generations.
Why must we confine a child to a gated bed, its rail propped at half-mast? Anxious fathers sometimes go so far as bolting its legs to the floor with metal braces. Why, when the cradle is a winged object. It swoops back and forth like a jump rope jingle: blue bells, cockle-shells, Evie ivy over. Will the baby ride on his father’s crossed leg, believing it’s a horse? Will he sail into the sky on a swing? Will he rock the rowboat, till water gushes over its sides?
You may see him now, the doctor says.
Double doors in the corridor open crossways like pinball flippers. A metal pad fastened on the wall makes them do so when tapped with an elbow. There’s an unoccupied reception desk and thus, a total lack of information. The enormous trash receptacles and U-shaped curtain that sweeps aside as you enter the room. Incubators in a ring, computer-stands at twelve and six, monitors flickering like overhead train schedules, 154, 125, 89. An alarm for blood pressure and warning signal for the IV sac slumping on its pole. The vats of Purel and Hibiclens and pads and sheets and preemie-size straight-jackets. The blanket—white with pink for good health and blue for bad news? The indigo bilirubin light, glowing over his crib on the third day of his life.
At first, the mother doesn’t want to see him. Seeing is bonding and he may not live. She edges in sideways, confining his image to the corner of her eye. When she finally takes it all in, she can’t help thinking of The Matrix with its monstrous vision of birth—pods filled with liquid, fetus plugged into a far-off biological network, consciousness transferred via a dozen thick hoses, their point of contact leaving scars like inverted nipples. This baby will endure six IV sites at once. Above his incubator, a small index card recording his weight. 2.04 kilograms at birth and much of it fluid pooled in his neck, giving him a mini-Frankenstein look. She’s called to nurse him for the first time, surprised that he latches on so easily. If his weight continues to rise, the baby is closer to going home. Checking will not make it rise any faster, but that index card is her touch point, better than worrying the needles taped inside his tiny veins. One by one, they’d soon be removed, won’t they?
At first, the father too is reticent and stands with his back to the incubator, following the monitors, not quite absorbing their information. They are a significant source of anxiety, but for now, easier to focus on than his son. He approaches the boy gradually, minute by minute, second by second, and then he’s up close, murmuring: hello little man, can you hear me? At this moment, the child is pink and breathing. A deeply practical man, the father sees no reason to think about the long term. The future is not palpable, contains no resolution, good or bad. And for his wife, the least he can do is force the appearance of calm. Fooling his family might metamorphose into believing it himself. Fake it till you make it.
The mother replays her anthem and shield, the music anointing her a noble beast, protector of the baby’s heart. Slowly, she too evolves into a brave one, cloak around her king, atmosphere around his earth. “And as the world comes to an end/ I’ll be here to hold your hand/ ‘Cause you're my king and I'm your lionheart/A lionheart.”
Lullabies, like a cradle, trace an arc—both major and minor. The heart goes here and there. The lion lies down with the lamb.
The first line of defense for Wolff Parkinson White syndrome is pharmaceutical. In the NICU, Amiodarone is administered by IV drip and serves to slow and correct the baby’s heart rhythm. The drug often affects thyroid function, resulting in hypo or hyperthyroidism. Synthroid is added for that too. As the days pass, the number of SVT incidents wanes and it’s clear the medicine is working. The Hydrops has subsided; he’s nursing well and gaining weight. The team of doctors gives the go-ahead and to everyone’s great relief the baby gets to go home, discharged with a stethoscope, scripts, instructions, and the usual coupons and benign infant gear. Three older children greet their mother as she arrives, drawings and flowers and Play-Doh sculptures displayed on the kitchen table. Even the chickens are happy she’s back, bustling and pooping around the front door.
The best way to hold a newborn is skin to skin, but at first she’s hesitant. The baby makes her feel like he’s the first ever—terrified to hold him, terrified he might choke or break or suddenly code. So the father strips off his shirt and lies down with the boy. Later, the mother orbits their bed, watching the children surround the infant, pulling on his tiny digits and poking his fuzzy cheek. Please stop, she says more than once. As much as she hated the hospital, she dearly misses its monitors and feeding tubes, the shared responsibility and beautiful black nurse who held her and wouldn’t let her go. Dangerous to take him into bed, particularly at night, so she lies down next to the co-sleeper, watching the baby’s chest rise and fall until it’s time to feed him again.
In critical illness, there are miracles, yes. But recovery is more like an ascending stock index—not without its reversals, corrections, and relapses. At home, he moves to an oral dose, administered every eight hours. Six months later, the child appears free of episodes and all medicine is off the table.
Alas, the half-life for Amio is approximately sixty days and it’s precisely sixty days when his arrhythmia roars back. A full year follows, studded with relapses. They occur randomly and anywhere. Once in a bowling alley, a restaurant, the playroom of their own house. In each case, physicians are alerted in advance as mother and father sprint to the emergency room where two nurses stand by to deliver those twin silver bullets, Atropine and saline. The patient’s veins are difficult to locate and he is pricked and prodded like pie dough. Is this the best a place of healing can offer? Is this a template for the rest of the child’s life? New medications in various combinations are introduced: Sotalol, Flecainide, Digoxin, a beta-blocker, Propranolol, more Amioderone, but the latter two are the only effective ones. The parents have learned to steady their panic, but coffee no longer consoles and “getting used to” is a state they never reach. Alas, “King and Lionheart” too has lost its potency. Now the lyrics remind the mother of the NICU and its abominations. Refreshing the song with a tip of her little finger doesn’t make it new or effective in any way.
When her son’s liver shows signs of distress, the discussion moves quickly to surgery. The baby’s case is extreme. Though he’s only eighteen months old and his heart very small, the doctors recommend an ablation. The technique involves mapping both healthy and accessory pathways in the heart through electrogram, performed in an electrophysiology (EP) lab. ECG monitoring electrodes are placed on the baby’s chest and back. A catheter is advanced from the groin or neck using fluoroscopic guidance, rather like GPS. On the screen, the heart as a whole isn’t visible, only its electrical activity, but a computer generates a ghostly simulacrum in three dimensions so surgeons can watch as the catheters snake up the torso. I’ve seen photos of these flexible tubes, capable of holding three separate wires, each with a tiny electrode at the tip. To me they look like lariats, designed to lasso, restrain, and kill off the offending beast. It’s hard to believe a baby’s veins can withstand them.
On the screen, culprit pathways look exactly as you might imagine them, flailing a bit with each heartbeat, skinny and useless like those sprouts growing between tree branches. Bad news for the tree, since they block light and draw up precious nutrients. Better to clip them carefully at the right time of the year.
And that is precisely what the surgeon does. Once the catheters are in place, he uses a radio signal generator to induce the arrhythmia so the pathways light up, then he zaps the unhealthy tissue. This produces a scar, which cannot transmit electricity in the heart. The process is both appalling and wondrous. On a separate ECG screen, the superfluous spikes collapse, one by one. Where once there were hundreds of saw-toothed mountains, there are now ordinary hillocks and meadows.
Nervously pacing in the visitor’s area, safeguarding her daughter’s cell phone, the grandmother once again decides to listen to the song. It’s no lullaby. What lullaby would be this quickly paced, with drumbeats and bass thudding away? She’d rather have Debussy’s “Claire de Lune” or Copeland’s “Saturday Night Waltz.” But gradually she begins to get it, especially during the refrain—fragile and forceful, strident like a battle cry. Nanna Bryndís Hilmarsdottir was once a solo act called Songbird. Now the band is five musicians strong. Shunning the usual autobiographical stuff, their songs derive from fairy tales they tell each other. And they sing in English because it has “a lot of sharp corners.” To call forth the courage in your people you must kiss the microphone, sing very loud, and brandish a lot of metal.
Today the mother sleeps more easily. She pulls her knees to her chest, tucks her head forward, hands fisted with thumbs between third and forefinger. Like a dog curling into the shell of itself, she breathes shallow for a bit, then releases out a final, long sigh. Her shoulders collapse, her mouth grows slack, hair falls over her face, but she’s too far-gone to push it back. Even a Lionheart has to let go once in a while.
Forward.
King Seamus wakes into his bedroom, the walls painted pale green. At three, he cannot be contained. He has mastered the art of escape no matter what his parents attempt—crib or car seat or bear hug from a father. It’s not just that he’s a boy; he’s a crazy fearless boy who throws himself from precipices, who overshoots the couch and slams his substantial head against the windowsill, the bruises on either side resembling a ram’s scurs. Midnight he wanders the house, snorting over his sisters asleep in bunk beds and rousing the enormous blonde lab on the sofa. One night, he drags a barstool to the front door, climbs up the bookshelf, captures the key hidden there, opens the lock, and steps out into the moonlight. His parents try locking him into his bedroom, only to discover him the next morning, sleeping without blankets, naked on the floor. Is his desire to establish himself competing with a wish to fly apart? Which of these urges should the mother and father encourage? Will it make any difference?
Forward.
The grandmother has been entrusted with the miracle child—anointed, but just for the night. A Pack N Play is assembled beside her desk, mini-fitted sheet, lap blanket, and extra pacifier for he still suckles on one and holds the other as he sleeps. Carrying him is simple: head on shoulder, left arm the hammock and right arm the brace to keep him upright. Arms loose at his side and no argument with his sisters, who brush against him carelessly. Soon they’ll be sleepy too. She treads up the stairs but it’s not lassitude gripping her. This miracle is too recent, too fragile to risk any misstep. They might fall together, his bobble head the last thing to strike the polished cement. The death of a child is an anomaly, an outrageous occurrence. She would never, ever be forgiven, least of all by herself.
Stand back ye monsters and ghosts, stand back.
As the grandmother slides an arm under his body to position him lengthwise, the boy stirs. Could be the unfamiliar smell of the mattress, the furnace signaling on, or pure reflex. Something’s not right and he breaks into a whimper, finally a revolt. Again she eases him down with little strokes and a low register nite nite little king/ nite nite little king. Though exhausted, he’s still not having it. Finally, she places him on her chest and climbs into her own bed, his legs splayed off her hips, cheek to her sternum. When nursing’s a faded recollection, here’s one use for her breasts; he settles between hers, directly over the heart with its muscle and blood and beat. She links up their respirations, two to one, shallow, shallow, then that long exhalation. No cradle is available so she makes the rocking sound, a tenor note that extends and drops like a foghorn off the Northeastern coast, air thick with moisture. “And in the sea that's painted black/ Creatures lurk below the deck/ But you're my king and I'm your lionheart.” How sweet to mock that movement and sing that song till the boy’s eyelids drop and his breath sails off on its own, and he is gloriously asleep.
Sarah Gorham is a poet and essayist, and most recently the author of Alpine Apprentice (2017), which was one of four finalists for the 2018 PEN/Diamonstein Award in the Essay. Study in Perfect (2014), was selected by Bernard Cooper for the 2013 AWP Award in Creative Nonfiction. Both were published by University of Georgia Press. Gorham is also the author of four collections of poetry— Bad Daughter (2011), The Cure (2003), The Tension Zone (1996), and Don’t Go Back to Sleep (1989). Other honors include grants and fellowships from the National Endowment for the Arts and three state arts councils. She is co-founder and editor-in-chief at Sarabande Books, an independent, nonprofit, literary publisher, which last year celebrated its twenty-fifth anniversary. She lives in Prospect, Kentucky.
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