Babyface: A Story of Heart and Bones

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When Jeanne McDermott's second child, Nathaniel, was born with Apert syndrome-a condition that results in a towering skull, a sunken face, and fingers webbed so tightly that hands look like mittens-she was completely unprepared for it. In this extraordinary memoir, McDermott calls on her dual roles as science journalist and mother to share her family's traumatic yet enriching experience. Though McDermott and her family had to endure Nathaniel's harrowing surgeries and the stares and comments of strangers and ...

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Overview

When Jeanne McDermott's second child, Nathaniel, was born with Apert syndrome-a condition that results in a towering skull, a sunken face, and fingers webbed so tightly that hands look like mittens-she was completely unprepared for it. In this extraordinary memoir, McDermott calls on her dual roles as science journalist and mother to share her family's traumatic yet enriching experience. Though McDermott and her family had to endure Nathaniel's harrowing surgeries and the stares and comments of strangers and well-meaning friends, they were also transformed by the boy's amazing strength and exuberant personality. With grace, courage, and humor, McDermott shows readers how a child with a rare syndrome can illuminate "a whole new way of seeing, not simply him and others, but ourselves."

"As richly peopled as a novel . . . Jeanne McDermott has taken her education in grief and its transcendence and given it, with tenderness and even wit, to her readers." (Rosellen Brown)

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Editorial Reviews

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A Story of Heart and Soul

The birth of a child is a time of rejoicing, a celebration of life, and a confirmation of love. But sometimes the path to that joy is a tortuous one when the child is born with a condition or disorder that means a lifetime of physical or mental disability. Such was the case for Jeanne McDermott and her husband, Ted. Their second son, Nathaniel, was born with an extremely rare and disfiguring genetic disorder known as Apert syndrome. The story of their journey and the remarkable lessons they, and others, learned from their special son is the subject of Babyface.

The main hallmarks of Apert syndrome are a premature and irregular fusion of the bones in the skull, which gives the child a long, bulging forehead and a flattened face, and a fusing of the bones in the fingers and toes. While brain function and intelligence in these children are usually normal, without major surgery to open up the fused bones of the skull and allow room for brain growth, the risk of brain damage becomes great. There is the potential for emotional damage as well, for even with surgery, the child will always look noticeably "different."

The McDermotts' reactions to their son's less-than-perfect appearance -- and their reactions to other people's reactions -- are described with brutal honesty. During the first year of his life, little Nathaniel faced several surgeries and setbacks, one of which nearly cost him his life. His story is told in alternating passages of high emotion and scientific objectivity, underlining Jeanne McDermott's love for her son as well as her background as a science journalist. Her depiction of the medical personnel they encountered is a real eye-opener, one that should make Babyface required reading for anyone involved in medicine.

McDermott tells of the strain Nathaniel's special needs placed on the family, from grandparents and aunts down to Nathaniel's older brother, who developed a few critical needs of his own. But she also tells of their unconditional, though not always uncomplicated, love for him. It is that, along with a questioning of one's fundamental beliefs about the importance of beauty, that shines through. Nathaniel's story has heroes aplenty, not the least of which is Nathaniel himself, whose gentle spirit and joie de vivre demonstrate what is truly important in life.

--Beth Amos

Publishers Weekly - Publisher's Weekly
In 1990 science writer McDermott (The Killing Winds: The Menace of Biological Warfare) gave birth to her second child. Although a prenatal amniocentesis had indicated she was carrying another healthy boy (her eldest, Jeremy, was then three), Nathaniel was born with a craniofacial abnormality and webbed fingers and toes (Apert Syndrome). Based on a journal she kept during her baby's first year, this book artfully combines fact and feeling to illuminate how McDermott and her husband, Ted, dealt with the drastically altered circumstances of their lives, and how they struggled to keep Nathaniel and themselves healthy. McDermott describes the crippling anxiety that engulfed her and Ted as Nathaniel underwent four operations in his first year of life--operations intended to make room for his growing brain, to protect his eyes and to improve his impaired respiration. She also explores the effect caring for her son had on her marriage: when the stress of Nathaniel's condition began to take over every aspect of their lives, McDermott and her husband decided they had to carve out time to be alone together. Without that down time, she writes, their relationship might not have survived. She also writes about her agonized response to strangers who stared at or commented on Nathaniel's appearance ("That baby looks like a space alien," she overheard one person say). Nathaniel is now a happy third-grader, comfortable with himself and others, but his struggle isn't over; his condition will probably require more operations. Still, McDermott notes, "the syndrome ceased to be the center of our lives [and] Nathaniel's." This insightful and expressive account will serve as an important resource for families struggling with Apert Syndrome. Agent, Michele Rubin, Writers House. (Sept.) Copyright 2000 Cahners Business Information.
Library Journal
With Babyface, Woodbine House hopes not only to reach its established audience parents of children with special needs but also an educated general readership. This is the story of Nathaniel, a child born with the rare Apert Syndrome, a craniofascial disorder. McDermott, a science journalist and Nathaniel s mother, does a wonderful job of describing the turbulent time following the birth of a child with special needs, and the drama in her writing would certainly appeal to a crossover readership. However, McDermott s scholarly language and difficult analogies might be too much for the already overwhelmed new parents of a special-needs baby, who are often dealing with chaotic emotions and a barrage of information, By sharing her personal experience, McDermott offers helpful information to families of Apert children, but her text is not as comprehensive nor as easy to understand as Hope Charkins s straightforward and practical Children with Facial Difference (LJ 6/15/96). Refer parents still in the early stages of adjusting to their child s diagonsis to Charkins s book; McDermott is more suitable for those who just need a reminder that they are not alone. For larger collections in academic, medical, and public libraries. KellyJo Houtz Griffin, Eatonville, WA Copyright 2000 Cahners Business Information.
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Product Details

  • ISBN-13: 9781890627157
  • Publisher: Woodbine House
  • Publication date: 9/28/2000
  • Edition description: 1 ED
  • Pages: 228
  • Product dimensions: 5.33 (w) x 8.55 (h) x 1.03 (d)

Meet the Author

Jeanne McDermott has written for the Smithsonian, Horticulture, The Wall Street Journal, Popular Science, and other publications. She was a Knight Fellow. Currently a science teacher in Cambridge, she lives in the Boston area with her husband and two children.

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Read an Excerpt




Chapter One


A Child


every summer, our family
takes a canoe trip. Last
year we looked on a map.
We saw the rapids. We
decided to float down them.
That day was as hot as the
hottest desert. It felt great
to be in the water.

(All writings by Nathaniel, ages 9.)


    Many years earlier—July, 1990


    We had expected our second baby to be born fast. The morning that Nathaniel arrived, I woke with a contraction and Ted immediately sprang into action. He canceled his meetings, packed two bathing suits into the overnight bag, and shepherded me into the same car in which Jeremy, our first child, had nearly been born.

    Jeremy had required little more than practiced hands to catch him, but he did join the world, much to our relief, in one of Boston's hospitals. Our panicky drive had coincided with rush hour, and was leavened by one comic moment when I lifted my head off the back seat, saw Ted mired in traffic, and wondered if it was logistically possible to give birth with pants on. Birth is a natural process, but then so are hurricanes, epidemics, and the bites of black widow spiders, and it had seemed foolish to be stranded in a car over the Charles River without any medical back-up.

    The second time around, we planned to get to the hospital with time to spare, and at least take advantage of the comforts advertised on the tour of Beth Israel's maternity floor. Ted harbored romantic visions oflistening to soothing jazz, pacing the halls arm in arm, and soaking in the hot tub, which, even in the humidity of July, sounded like an infinitely better place to go through labor than the back seat of our car.

    By nine a.m., Jeremy had settled into nursery school and we began the fifteen-minute drive from Cambridge to Boston, with a smug sense of satisfaction. As Ted nosed into a rotary, a contraction jack-hammered my body, shortly followed by another even more intense, leaving me slumped in the front seat, humbled and hyperventilating.

    "Which way?" Ted pleaded. I cracked my eye, feebly waved a finger, and Ted veered off onto one of many spokes.

    "That way!" I screamed with a sickening sense of deja vu that this was where we had gotten lost on our last mad dash.

    Ted regained his sense of direction just in time. The hospital loomed beyond a mess of buses, through which Ted deftly maneuvered. When we reached the front entrance, the security guard took the car keys. From the shadows, Ted commandeered a wheelchair and firmly took charge, relaying names, addresses, and health insurance information to a nearby nurse. We crowded onto a waiting elevator, where the red numbers very slowly blinked on and off and to Ted's chagrin, I bellowed like an injured animal, past caring about anybody or anything. Ted was not ready to concede, but I knew that the baby had won.

    When the elevator opened at the maternity floor, a nurse grabbed the handles, the linoleum floor rushing past the wheelchair's footrests in a blur. After the contraction ended, I looked up, disappointed by the Spartan delivery room, with its beige bed, beige chair, and Wizard of Oz drape concealing the emergency equipment. The one window, which offered a bleak view of a parking lot, only enhanced the budget motel ambiance; decoration unworthy of the room's grand purpose.

    But the next contraction wiped out any sensitivity to my surroundings. Ted grasped how far and how fast labor had progressed when I could not heave myself onto the bed without his steadying grip around my shoulders. A twinge of disappointment registered on his face but that gave way to glee as the nurse midwife expertly belted an elastic monitor around my aching belly.

    "You can see the heartbeat!" Ted said excitedly.

    I squinted at the dark computer screen looming next to the bed where the white zig-zags of my heartbeat chased the baby's. Lub-dub and I made strong, playful leaps and at the same time, electronically beeped, like an alarm gone berserk. Ted squeezed my hand as I closed my eyes to ride out the next contraction.

    "Open, remember?" he prodded kindly when the pain ended. He meant my eyes. I had seen nothing during Jeremy's birth because all of the medical rigmarole—the machines, monitors, gowns, IVs, even stethoscopes—infused me with terror. It was one of those professional ironies that inspired guffaws: I was a science journalist with seemingly endless curiosity about how things worked, yet squeamish about my own body. With the simple trick of shutting my eyes, the fear vanished and with the fear gone, pain became manageable but Ted had felt left out.

    "I'll try. Remind me if I forget," I said, blocking out everything in the delivery room except Ted. Looking at the heartbeat monitor was bad enough. Unlike Ted, who saw merely numbers, I replayed every delivery room horror story in my expansive repertoire. I could not help second-guessing the dire circumstances indicated nor could I stop worrying that the nurse midwife had missed a vital detail every time she glanced in the other direction. So I clung to Ted's green eyes, captivated by their perfectly compatible promise of safety and adventure and the knowledge that he would have given anything to change places, not from any heroic sense of duty but because he would have liked to experience childbirth himself.

    I had known Ted a long time. We met in college when he climbed a ladder propped next to my dorm window and offered to share a box of strawberries—a sweet exchange that foreshadowed many more. While Ted studied wind energy and I concentrated on microbiology, a friendship grew which blossomed into romance after graduation, and, in due course, marriage. Having left windmills behind for business school, Ted now worked at an investment firm in Boston as a stock analyst.

    The pain intensified, jerking the muscles in my body, dimming the sweet glow between us. As the lull between contractions shrank, so did my capacity for rational thought until primal instinct took over, annihilating all senses of boundary and definition. I sweated, got chilled, and became furious with Ted for not divining each thought as it passed through my mind at breakneck speed. As Ted put socks on my freezing feet, I wanted to push but hesitated, not trusting that this baby was ready to be born so soon.

    A pit crew of nurse midwives and doctors migrated from other posts on the maternity floor and with authoritative voices reassured that now was the time. Summoning all of my strength, I pushed but a rational thought intruded: this was much more strenuous than what Jeremy had required. That registered as wrong. I suppressed panic and redoubled my efforts on the next command, chiding myself that every baby is different, and yet oddly aware that emergencies require calm and speed. I forced my eyes open, searching for Ted's confidence to rein the growing fear back.

    "Scream if it helps," he urged.

    I let out a sharp yell as the next contraction hit.

    "Again," he said, trying to veil his pain at seeing my own.

    "No, it makes it worse."

    There was no time to say more as voices coached and cajoled, and then suddenly the baby slid out. What exhilarating triumph, what giddy joy, what hard labor to birth a child! Breathless, I glanced up at the wall clock. It read 10:30. Only an hour after arriving at the hospital, I thought. I ached to meet the little being who voyaged from beyond. Having once experienced the magical, boundlessly hopeful sense that only a newborn can bring, I waited eagerly, impatient to experience it again.

    The room swelled with rosy silence, no words, just happy panting as Ted joined the doctors and nurses huddled at the base of the bed, doing the Apgar Test behind the curtain. With the worst over, I was not worried. It had taken a little while for Jeremy to breathe at first. Then Ted returned and his hand tensed in mine, communicating a problem that was obvious and visible to everyone in the room, except me.

    The baby was in trouble.

    What did that mean? Something cold sliced through my joy. I felt accelerating fear, a dark funnel of unvoiced thoughts and feelings, a concentration of a purpose, people jostling in and out, the absence of our baby's cry, the agony of not being able to see this new little person. Finally, someone said, "We're having trouble getting him to breathe. He needs to go to intensive care."

    "Can't I hold him?" I asked. "Just for a minute?"

    Ted's eyes widened behind his glasses as he whispered that the baby's fingers were fused and something about the bones in his head and face had not formed right. When the doctor nervously placed the minute-old baby in my arms, Ted circled us both in a tightening embrace. Deep shock brought an exaggerated calm in the moment that I touched the baby's hands. They looked like mittens! A tiny thumb was separate but pearly skin joined the other fingers together, making little pink cups.

    That's no big deal, I thought with a flash of intuition. Ted gently stroked the baby's tall bulging head, felt the bumpy ridge above his eyes that made him look as if he had worn a tight hat whose band had left its mark. Only when the baby's rosy mouth puckered into a soundless cry did I understand as clearly as Ted had just minutes earlier that, for his survival, the doctors must take this extraordinary baby away.

    While the placenta was delivered, a resident asked, "What's the baby's name?"

    The simple question summoned the biggest uncertainty that had preceded his birth. "We were going to name him Nathaniel. But maybe he is a Gabriel?"

    "Why?" Ted held my gaze.

    "He'll need his guardian angel," I declared, eyes brimming, unable to say that since everything we imagined for this baby had changed, maybe his name should too.

    Ted shook his head, sympathetically. The fear in his eyes dissolved into a passionate clarity that said he had bonded to this child as instantaneously as I had.

    "No," Ted said in a quietly reassuring voice. "He is Nathaniel. The Nathaniel we have been waiting for."

    Then it ended. The men and women who attended the birth filed slowly out, shoulders slanting, faces shadowed, dodging any direct gaze. A taut silence stretched across the delivery room. Only one, the last to leave, gently murmured," congratulations," the single word that the others had not voiced. My anger boiled like magma. I hated the strangers who had glimpsed our baby's first battles for breath and yet greeted his entry into the world without joy, welcome, or encouragement.

    Then as quickly as it boiled, the anger subsided while Ted and I clung to each other, tears raining down our cheeks. A healthy boy: the amnio had promised, that's what we had announced exuberantly to my parents in Chicago, to his in New York, to brothers, sisters, and scattered friends, that's all that had ever mattered. Now our healthy baby boy lay in intensive care and his absence brought a searing animal pain, infinitely more excruciating than labor.

    For nine months—settling behind the steering wheel, rolling over in bed, bending down—I had been obsessed with the baby's wellbeing, aware that every sip, every bite, every chance to put my feet up had been for him. Now I wanted nothing more than to safeguard him as I had for nine months. Here in the hospital, when he most needed to be protected, I had failed. Ted was quietly torn between taking care of me and going to intensive care. Please, please go, I urged him, pleased that he could do what I could not, but as soon as he vanished down the wide unfamiliar hallway, I wished him back.

    Abandoned in the delivery room, I lay on the hospital bed, haunted by a suddenly vivid nightmare. Last night, I had dreamt of taking a trip and found myself in labor, in the countryside far from home, in a squalid, rat-infested hospital where bare bulbs lit cinder block walls, like the Godforsaken Rumanian orphanages depicted in magazine exposes. I refused to have the baby, saying, "There is no neo-natal intensive care unit."

    I opened my eyes and looked out the window, scanning the uneasy blue sky above the parking lot. I tried to shake off the memory as a disturbing coincidence. In a hallucinatory moment, I floated, detached from my body, suspended in the void of nothingness. Fascinated by the unfamiliar sensations of hyperawareness, my attention pirouetted around the room. The textures flattened, the already mute colors became even more indistinct, the flat surfaces of wall, floor, and ceiling undulated while utter quiet descended like a bell jar. The room became strangely peaceful, the loneliness welcome. Only the phone, next to the bed, exerted a frightening presence. The act of speaking, explaining, or elaborating on what had just happened defied comprehension. Complicated thoughts splintered into fragments which no language could encompass.

    I struggled to get my bearings, imagining shreds of a previous life, but unable to see the connection between our three-year-old son, Jeremy, on the nursery school playground and our newborn in intensive care. There was a link between this morning and now but since the connection was too remote to grasp, too ephemeral to find, I stared instead at the tiny dancing bubbles of carbonation inside the glass of ginger ale next to the bed. As each bubble burst with a pop, releasing a spray and then diffusing into the air, I felt an unaccountable kinship and sense of wonder as if I was pushing my way through the sugary liquid, breaking the surface tension and soaring freely away.

    A wary nurse intruded into the room, speaking words hard to translate, trying to help me change my clothes. Too much had been taken, too permanently, too fast and I was shaking my head, refusing the hospital johnny. I needed to wear the T-shirt that I had borrowed from Ted earlier in the morning, for a token of protection, the ghostly droop of his shoulders around my own. But Ted saved me when he burst back into the delivery room, eyes bright with discovery, accompanied by a doctor who solemnly carried a dog-eared textbook.

    "We think that your son has a craniofacial abnormality," the doctor said, with a cough as he pointed to a stark, black and white photograph of a boy with bulging eyes, towering head, and slack-jawed mouth.

    "But you're not sure," I said, feeling a surge of manic lucidity, the intellectual equivalent of the mother who hoists the car off her child.

    "We are trying to find someone in the hospital who has seen a child with Apert syndrome before," he acknowledged, awkwardly pronouncing "AY-pert" as if he had never heard the word actually spoken.

    Apert syndrome. Whoever the hell Dr. Apert was. I despised the cold hollow sound of the diagnosis, the sliver of immortality that it conferred on a stranger whose scientific calling had culminated not in the naming of an Alpine peak, lunar valley, or Amazonian orchid but this claim to my child. Nathaniel would never belong to Dr. Apert or anyone else, but the name meant that he inhabited the known world and for that small favor I could see that Ted was very grateful.

    The boy on the page stared implacably back. When I had glimpsed a similar photo in college, I had averted my gaze but now I studied the image with stunned fascination. The aggressive mug-shot pose made the boy a specimen. In my mind's-eye, I resurrected his humanity by conjuring a teddy bear and muddy sneakers outside of the picture's frame until I was wrenched by the realization that I had seen this face more recently in the studio of my friend, the photographer Nancy Burson.

    Nancy and I had met five years earlier when I interviewed her for a magazine article on—oddly enough—the face. She had recently begun a new project photographing children born with rare cranio-facial conditions. Confronted by the medical picture, I could not avoid the sense that in a conspiracy of forces beyond my control, Nancy had been guiding me, long before this day. Then this glimpse of order evaporated like a thread of smoke and I was jarred back to the chaotic present.

    "When can I see him?" I asked, urgently.

    "When his condition is stable. Nathaniel is having a hard time breathing on his own. Probably because the bones in his nose did not form properly," the doctor explained as he wheeled me out of the delivery room to make way for another child ready to be born.


    As Ted made the first phone calls, I loved him fiercely and wondered from what unknown place he found the poise, composure, and gentle voice to announce that Nathaniel had arrived but was in intensive care. He called someone who became so distraught and hysterical that across the room, I could hear the voice urging Ted to let Nature take its course.

    "He's not a vegetable," Ted said calmly.

    There was a pause.

    "He's not going to die," Ted said.

    Another pause.

    "They're not prolonging his suffering. He had a hard time breathing. He's getting oxygen."

    Across the room, the voice said doctors are arrogant assholes who do what they damn well please, forget the heroics.

    "Nathaniel is fine," Ted soothed before hanging up. "They're giving him extra help. That's all."

    While Ted paced, drained, I reached my younger brother Charlie's answering machine and after hearing his upbeat message, paused idiotically and then sobbed. I repeated this performance with Dad's answering machine in Chicago.

    "The baby's here," I choked out the news to Mom's housekeeper when she said Mom was out. "Tell Mom ..." Tell Mom what? "Tell Mom that he's got problems."

    "Honey," she said with serenity. "We've all got problems."

    "Not like this," I replied.


    I had never been in intensive care, much less one for infants. As soon as Nathaniel stabilized in the afternoon, I followed the directions written in bold letters, washed my hands at the stainless steel sink, and nervously entered a sunny space fully equipped—with every life-enhancing gizmo and gadget—to handle the most dire circumstances of a child's arrival into the world.

    So finally! This was our baby!

    But he seemed lost in a seaweed of tubes, swallowed up by computers that displayed his heartbeat and every other vital function, engulfed by a dataflow larger than his body. Every aspect of intensive care—from the deathly calm to the mission control equipment—repulsed me except its purpose. I opened my eyes, searched Ted's for reassurance, but found none.

    Nathaniel lay on a table-high incubator, not swaddled, but under the glow of heat lamps, warmed like a dish in a restaurant kitchen. The tiny oxygen mask, the suction tube in his mouth, the IV in his ankle, the round heart monitor patched on his chest, the red light of the oxygen monitor taped to the pellucid skin of his big toe—the technology was comprehensible yet opaque. I understood what it was doing but not why.

    I sought a place to touch Nathaniel, reaching under the heat of the incubator light for his tiny mitten hand. As soon as I placed one finger inside his smooth palm, tears brimmed in my eyes. With the other hand, I stroked his scrawny leg, wrinkled from the amniotic bath, his translucent skin criss-crossed with purply veins and covered with sworls of downy hair, noticing for the first time that his little toes were webbed too.

    "Did you see that?" I nudged Ted.

    He nodded and said with delectable surprise, "He's so big."

    I bent over the plastic crib, whispering in his tiny ear. "Hey, little guy. I'm so sorry that you have to be here." Nathaniel startled and returned to dreamy oblivion.

    "How will they ever fix that?" I stroked Nathaniel's clotted masses of black hair. His forehead seemed enormous, his brow bulging and folding above his eyes, as if the middle of his face had been stamped down.

    The NICU doctor shook his head and promised that if anyone knew the answers to our questions, it would be the craniofacial specialist at Boston's Children's Hospital, who planned to visit at the end of the day.

    Ted sighed deeply, for no remedy was obvious. Watching Nathaniel breathe, his mouth open, sucking air noisily, his tongue periodically defeating the whole effort, terrified Ted. He had already witnessed him turn dusky blue, once at birth and once in the aftermath.

    "When I was in medical school, the textbook said that babies are nose breathers," explained the NICU doctor, sounding like a ship captain talking about a malfunctioning bilge pump. "In forty years here, I've seen kids born without a nose. This guy doesn't have a choice either. He'll figure it out."

    He said that Nathaniel also had pneumothoraxes, little pockets of air trapped between the lung and the chest cavity, which made his breathing problems even worse.

    "It happens sometimes when babies are born fast," shrugged the NICU doctor, suggesting that he had seen more than we would ever guess. "This guy came fast, didn't he?"

    Ted nodded, appalled by how hard it was for Nathaniel to do what most newborns do effortlessly.

    "How's he going to nurse?" I asked, longing for the bond of breastfeeding to ease the terrors.

    "Babies were made so they don't need to eat for the first 48 hours anyway. He'll have to eat and then breathe. Take turns."

    It seemed unfathomable but the NICU doctor's allegiance and faith in the tiny babies for whom he was responsible quieted my doubts and eased the furrows on Ted's brow.

    "Give him more time," urged the NICU doctor. "He's had a rough morning."

    "How many kids have you seen with Apert syndrome?" Ted asked.

    "This makes—let me see—three," he hazarded.

    Three in forty years, at a city hospital where a baby was born every hour of the day and night? I shook off the NICU's numerical obsessions and stared at Nathaniel, wondering again who this baby would be. Common sense dictated that a second child would be different. I had wished for a child with Ted's full lips and strong Yankee jaw, my black Irish eyes and long neck, knowing that no one can predict what rogue gene will gain the upper hand.

    When Jeremy was born, I saw a baby lucky to have college-educated parents who lived in a democracy where sewage treatment and mandatory vaccination promised a long life. Nathaniel occupied the same demographic niche as his brother but because his hands and face—the two parts of anatomy most closely identified with being human—were different, doubt swaddled his future.

    "That number went below 90. It's not supposed to go below 90. What was that?" Ted asked when an alarm blasted.

    The nurse quickly checked it and answered, "Bad connection in the circuit."


    When Jeremy came to the hospital at the end of the day to meet his little brother, his simple innocence ignited the joy shrouded by the syndrome, interventions, and the things gone wrong. After performing the ritual ablutions at the entrance with an expertise that I hated having acquired so quickly, I led Jeremy into the intensive care unit. He giggled, ignored the medical hardware, and took no notice of the preemies in their isolette spaceships struggling to survive.

    "Say hi," Ted said, hoisting Jeremy up so that he could peek into his new baby's crib. Jeremy gently patted Nathaniel's head and then wiggled out of Ted's embrace, eager to test-drive one of the rocking chairs that circulated around the NICU.

    "You want to hold him? You can," Nathaniel's nurse said to me. "He's been doing great!"

    "I'd love to," I replied and then asked quickly, "How about you, Ted?"

    "Sure," he said a smile blossoming across his etched face.

    "You go first," I said, suddenly afraid.

    The nurse settled Nathaniel, who had wires and tubes coming out of him like a stereo, in Ted's arms. Ted adjusted the little knit cap, too tight for his big head, then quieted Nathaniel's whimpers with the same nurturing clucks that soothe a high-strung horse.

    "Here, Jeremy," I said. "Let's tape your letter to Nathaniel's crib."

    Ted had taken dictation: "Dear Baby—I love you and see you everyday. I will talk to my mom and then I will open my big brother presents and then I will go sailing and then I'll go to the haircut place and then I'll see you in the morning and that's it. Love, Jeremy."

    "How about your baby present?" I asked.

    Jeremy happily dropped a terry-cloth Babar rattle inside the crib, where the red light of the disconnected oximeter illuminated the King of the Elephant's dignified, merciful face. Why sailing? I wondered. Where did he pick that up?

    Then, Ted and I switched places. For a brief second at Nathaniel's birth, I had cradled him, but not truly supported the weight of his wrinkled body nor fully absorbed his musky scent. Now, despite the electronics, I savored the bliss of a warm new life pulsing in my arms. In the family snapshot taken by friends that first night, sorrow tugged at the corner of Ted's mouth, Jeremy's limbs blurred, Nathaniel slept, and I smiled, buoyed with daffy optimism—our baby was born, he was alive and all the rest would work out.

    By nine o'clock, after the summer sun had set, Jeremy rested his head on Ted's sagging shoulder, both looking exhausted, I thought with regret.

    "I love you," Ted said, kissing me goodbye. "Get some sleep."

    I murmured the same as he staggered to the elevator and I retreated to the blueish dark of my hospital room, where the breadth and amplitude of the day began to sink in. In the thick of Nathaniel's medical issues, I had forgotten what it meant to recover from childbirth. But body pain was inconsequential compared to the demons that danced in my imagination, thwarting sleep.

    "I saw your light," the night nurse said, after knocking softly on my door. "How are you?"

    "I'm scared that Nathaniel will live at home forever," I sniffled. "I'm scared that kids will tease him and no one will invite him to a birthday party."

    She sat on the edge of the bed, quickly reached over, and hugged me with big soft arms, her blue hospital smock absorbing the tears. "I saw him in the nursery. He's big! And cute. There's a girl who lives across from me—I think she's got the same thing. She's at the local high school."

    "Really?"

    "You'll be amazed."

    "He's not the baby I imagined," I sighed. "I'll go upstairs and hold him. That's the only thing that makes me feel better."

    The night nurse opened the door onto a corridor dark and lonely as a city street, except for a light at the end of the hall where a policeman, arms folded across his stocky chest, sat in a folding chair outside one of the rooms.

    "What's the cop doing?" I asked.

    "Working," she paused. "I'm not supposed to say this but one of the mothers is an inmate from Framingham. Don't stay too long. Try to get some sleep."

    In the NICU, I took Nathaniel out of the incubator myself and we rocked and rocked and rocked while blue-suited nurses measured the progress of tiny lives, in a cloying fog of alcohol and disinfectant. I stared numbly out the dark window at Boston. Above the lights that craned over Fenway Park, lightning split the sky and thunder boomed like fireworks as storms churned their way towards the Atlantic. It was a city where common sense had never gone out of style and where a social revolution had been born based on the radical but necessary lie that we are all created equal. The local radio station played a popular hit from the 1970s. "Of all the dreams I've lost and found," sang Joan Baez. Of all the dreams. Nathaniel stirred and I brushed him with tears. In the hourless depths of the night, in the predawn NICU, I grieved for the dreambaby who had died and loved the one who had been born.

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Table of Contents

Acknowledgements vii
Introduction ix
One ~ A Child 3
Two ~ Homecoming 19
Three ~ A New Family 33
Four ~ Bloodknot 53
Five ~ Birth Announcements 69
Six ~ Three Months 87
Seven ~ Crossing the Line 103
Eight ~ The Holidays 121
Nine ~ The Butterfly 141
Ten ~ Spring 161
Eleven ~ Beauty 177
Twelve ~ Down the Stream 201
Thirteen ~ Afterword 211
For More Information about Craniofacial Conditions 221
Recent Research on Apert Syndrome 223
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  • Anonymous

    Posted November 23, 2000

    Superlative Reading

    This is a fantastic book

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  • Anonymous

    Posted November 2, 2000

    excellent

    amazing story by Ms. Mcdermott. I felt it reached out to many different audiences. I also like her charecter description, of her family. I was up all night reading it.

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