The night of Madeline’s birth: Amy (mother) meets Madeline for the first time since her stay in the Neonatal Intensive Care Unit. It is night and machines hover around Madeline’s incubator, blinking and humming through the darkness. Madeline’s appearance is shocking:
She lies still, her wrinkled limbs flopped across a stiff flannel sheet. A sunshine-yellow toque covers her wee head; her tiny bits of ears peek out from under the fuzzy yarn. Cartilage hasn’t formed yet, so her ears are just flaps of skin, folded forward against her head. Her puffy eyelids are fused together like a newborn kitten’s. Their inability to open creates an illusion of blindness, a suggestion that perhaps she’ll never see the worried faces hovering over her. Saliva foams and dries around the ventilator tube that slinks over her pointed chin, into her gaping mouth. She has no fat, nothing to plump the pouches of skin that drip off her jaw and pile into layers on her neck and shoulders, just a coat of downy hair to protect against the amniotic fluid she no longer swims in. With each breath, forced into her underdeveloped lungs by the mechanical ventilator, her ribs protrude against her crimson, gelatinous skin, like shark fins skimming the surface of the ocean. She disturbs me. Her fragility, her helplessness—I’m overwhelmed.
Chapter 1: The story returns to the previous year. While on a walk through her neighbourhood, Amy considers parenting and is frightened by the prospect of having a baby. She worries that she and her husband won’t make good parents, that they aren’t wise enough to raise a child.
Interspersed with her thoughts are observations of her neighbours. Children and family life are woven through life in the suburbs and she realizes how important a child will become in her and her husband’s lives.
Soon after, Amy discovers she’s pregnant. With the appearance of two parallel pink lines, she feels her life changing. Amy feels peaceful, Madonna-like, as if she’s the first woman to ever be pregnant.
Chapter 2: Amy has a minor bleeding episode and the pregnancy is in jeopardy. Suddenly, she realizes how badly she wants this baby. She can’t remember ever doubting her desire for a child.
Amy is sent for an ultrasound. Although not many weeks pregnant, Amy glimpses the earliest images of her baby. Like a blueberry, throbbing in the middle of an oyster, the baby can barely be seen in the grainy ultrasound view. Amy and her husband Josh are mesmerized by what they see. The results seem normal, so their worries for the pregnancy are calmed.
Chapter 3: At twenty-three weeks gestation, Amy has a major bleed. She’s at home, by herself, when she experiences a massive blood loss. As blood floods from her, she feels the baby’s sac slipping out of her body. The sac feels like crushed flesh when she touches it. Amy realizes she’s losing her baby. In shock, she drives to the hospital, but she can’t find parking. Once in emergency, she’s sent to the wrong ward. When she finds the Obstetrical Assessment Unit, she is in assessment until she is a registered patient of the hospital. As each obstacle arises, the absurdity of the situation increases Amy’s anxiety.
Chapter 4: Amy is questioned by a nurse who only grasps the seriousness of the situation at the point when Amy says she feels something sliding out of her body. A resident assesses Amy and confirms her worst fears: the baby is slipping out and will, most likely, be born that day. Amy is sent for another ultrasound which confirms the diagnosis: the baby’s sac has slipped into the birth canal, past the cervix, which is wide open, ready for delivery. The ultrasound technician kindly asks if Amy wants the overhead monitor turned off, so she can’t see the baby.
Chapter 5: Amy is placed in the Trendelenburg position, with her head remaining lower than her feet, in hopes that gravity will keep the baby inside. Amy is catheterized and hooked up to IV machines, for hydration. She and Josh meet a neonatologist who explains how serious it is to give birth seventeen weeks prematurely. The odds of mortality or disability are very high. Also, before resuscitation of the infant can be considered, Amy will have to be transferred to a hospital with a better neonatal intensive care unit. The doctor explains that transferring Amy in her fragile state is unwise. Faced with dire statistics for survival, Amy and Josh decide not to resuscitate the baby if it is born within the next few days.
Chapter 6: Amy struggles to adapt to hospitalization and bedrest:
I glare at the wall clock, my ears pricking with each tick. Seconds pass so slowly that I wonder if something is wrong with the clock. It’s like I’m eight years old again, jammed in the backseat between two older sisters on a road trip to the mountains, being told to sit still. As it is, I can’t shift one way or another, even if I want to. My body weighs down my head, ploughing my shoulders into the mattress. I keep thinking horrible things, over and over—things about the baby, things about my body, things about a future I can’t rationalize away. I’m stuck, in every sense of the word.
Chapter 7: The first night in hospital is followed by discussions of cremation versus burial if the baby comes soon. Labour pains begin and Amy changes her mind about resuscitation. She wants to try and save the baby, no matter how early. Josh tries to calm her, but she is insistent: she wants to transfer to a better facility that can resuscitate the smallest of babies. Josh agrees, and informs the medical staff. Labour pains die down, and the transfer is organized for the following day. Josh offers to invite Amy’s mother to stay with her.
Chapter 8: By the next day, Amy doubts the assuredness of her decision to transfer. She knows nothing can be done if she goes into labour on route. The paramedics arrive to transfer her and Amy’s nurse protects her as much as she can:
Nurse Janice, the Catherine the Great of the maternity ward, sails into the room, barking orders: “Amy needs to be lifted onto the gurney as smoothly as you can. Do not jostle her. Be careful.”
The paramedics all nod circumspectly, then set off towards the elevator with great speed, if not great finesse. Perhaps, if I had just suffered a car accident and a major artery was swiftly emancipating torrents of blood, I would have appreciated them dashing down the hall, but since I’m worried that a hearty sneeze may produce my baby, our bumpy journey concerns me.
Janice calls to the paramedics, “Lift her over the door frames, please!” But she’s largely ignored, so she dashes ahead, throwing herself in front of obvious obstacles like corners, other stretchers, and a woman moaning on the bench outside triage.
At the General Hospital, Amy is cared for by Nurse Eileen who provides a no-nonsense welcome, but whose warmth is a pleasant foil for the officiousness of other staff.
Amy’s mother leaves Winnipeg, on route for Ottawa and Amy muses about her mother’s decision to come:
Like a scene from a National Geographic documentary where the mother elephant barrels through the bamboo to rescue her distressed baby, my mother purchased an expensive, last-minute ticket to fly over the Boreal Shield, just to get to me. Unlike the mother elephant, she can’t save me from my distress, but she’ll at least try to make it better.
Chapter 9: Josh and Amy are again counselled about premature birth outcomes, this time by a young, sympathetic doctor who seems pleased when he hears their decision to resuscitate:
Dr. Hudson nods cheerfully, as if he’s relieved. I wonder if he was hoping we’d choose resuscitation, despite his bleak rendering of the literature. He doesn’t seem to wish that we’d give up so an incubator can be saved for a baby with a better chance of survival. In fact, he seems pleased with our faith in the system, our confidence in his and his colleagues’ ability to save our child’s life.
Amy’s mother arrives and immediately straightens up the untidiness, goads Amy into eating, and encourages Josh to get out of the hospital room. Her presence is an energizing force. When she leaves for the night, however, a medical error gives Amy a painful night’s sleep.
Chapter 10: Amy is given a steroid for the baby’s lung development but it causes fluid retention in her own lungs. Not understanding the serious consequences, Amy puts off telling anyone that she is having difficulty breathing, until she can hardly get a breath. Conflicting medical advice is given. Although Amy has been lying with her head lower than her feet, she’s now placed in nearly a sitting position to help her lungs clear. This change of course upsets Amy and she worries for the baby. After a day’s treatment, her lungs drain of fluid and the crisis passes.
Chapter 11: After five days of hospitalization, Amy is no longer deemed in danger of giving birth immediately. She is moved out of the Labour and Delivery ward into a long-term care unit:
My new room looks west, over a medical helicopter landing pad, towards the Children’s Hospital. Large windows allow the late afternoon sun to shine over the two beds which face each other. A bright blue privacy curtain hangs on a hundred small chains, right down the middle of the room. The other bed is vacant, but I’m warned a room-mate will soon join me. The décor is hospital-bland, as if patients wouldn’t be able to handle the excitement of real colour. African-violet-blue chair upholstery? No, indeed. A faded-sweater-grey will do. Bronzed brick façade? Best paint it over with a frail shade of insipid coral. The colour palate reminds me of a cheap print left hanging in sunshine for a decade or two.
Amy is sent for a heart ultrasound, gets a room-mate, then suffers through her room-mate’s husband’s inappropriate behaviour.
Chapter 12: In the middle of the night, after a futile discussion with her nurse about her amorous room-mates, Amy goes into labour. By morning, the baby is in the birth canal, nearly born. Amy labours throughout the day, then receives an epidural. She painlessly watches the arrival of her daughter, Madeline, sixteen weeks premature. Amy’s watches Madeline’s first moments on a camera screen:
On the LCD monitor, Madeline lies in the middle of a resuscitation table. She’s positioned spread-eagle while the resuscitation team reach from outside the picture’s frame, inserting a ventilator tube down her throat and an IV line into her arm. Her chest is covered in circular sensors and something that looks like a teabag is fastened to her clipped umbilical cord. She lies in a Ziploc bag—a medium freezer-size, perhaps—and Josh explains that the plastic will keep her skin hydrated during the resuscitation. A warming lamp glows over the staff as they scurry to stabilize her in this unbelievable new environment.
Chapter 13: The improbability of Madeline’s survival becomes apparent. Josh and Amy meet with a neonatologist who explains the challenges Madeline faces. The conversation is devastating:
We look at our hands, at our shoes, at the tiled floor, anywhere but at Dr. Fiala. We don’t want to face the ugly truth presented by the kind and gentle doctor. It’s the combination of message and messenger that jars us. If the dire news had come in a stapled report, typeset with serifs, we’d be braced for its severity, but this way—whispered sympathetically by another mother—confuses our expectations. Nice people don’t tell you horrible things. They just don’t.
Chapter 14: As Madeline’s condition deteriorates, Amy is discharged from hospital. The world seems changed:
I stare dully out the window, but everything I see reminds me of my own misfortune. The number of women pushing strollers seems to have skyrocketed and everywhere I look there are minivans with their pointless “Baby On Board” stickers. Swing sets peek over backyard fences and tree houses perch in the broad branches of maples. I imagine all the houses are filled with happy children, sleeping in beds, not incubators.
At home, Amy tries to catch up on sleep, but is interrupted by a phone call from a public health care nurse who doesn’t understand the situation.
Chapter 15: Josh and Amy visit the NICU during doctors’ rounds. Madeline’s condition has deteriorated. An infection is suspected and a medical error from the night nurse causes Madeline pain:
The medical team surrounds Madeline’s incubator, Josh, and I in a large circle. They all wear hospital-issued blue scrubs and sensible footwear—there’s not a ridiculous pair between them—and introduce themselves in soft voices. Perhaps they’re wary of us, afraid of hysterics, or perhaps they’ve seen Nurse Bridget’s report on the night nurse and, noting the streaks of mascara on my cheeks, are treading carefully.
Chapter 16: Josh and Amy try to go back to normal life while still visiting the hospital twice a day. Josh returns to work and Amy runs errands, though she finds going out in public difficult. Amy’s mother stays to help, and tolerates Amy’s impatience. Josh and Amy meet other parents in the NICU, including a pair of troubled teenagers.
Chapter 17: Madeline continues to weaken. She is treated with antibiotics, but the laboratory can’t find the specific infection so the treatment is largely ineffective. Amy returns to work as a music teacher, but she finds it difficult to concentrate. The doctors request permission to do a spinal tap, in case of meningitis. Josh holds Madeline for the first time while her incubator is changed. Amy feels guilty because she was teaching and missed the moment.
The laboratory reaches a conclusion: Madeline has an E. coli infection in her blood. Josh and Amy realize how serious this diagnosis is.
Chapter 18: Madeline does not improve. Her weight drops down to just over a pound. Her intestines are inflamed and her feeds are stopped. Her skin is so thin and fragile that bloody wounds from the medical equipment occur daily. Her stomach is visible through her skin. She turns grey[GR3] because her body is not producing red blood cells and blood is constantly being taken for tests. She receives her second blood transfusion.
With constant shift changes and doctor rotations, Madeline’s medical chart is an important record of her progress:
Trends and tendencies, policies and priorities—the game of Madeline’s life is played out on her chart. Miniscule grid boxes, each stuffed full of abbreviations, line up like chess squares, their fine-point figures contrasting with the scrawl of nurses’ signatures. In isolation, the bits of data might seem terrible, deadly even, but when viewed as a group, an entourage of statistics, they show Madeline is still alive. And if she can live for one week, then why not for two?
Chapter 19: Madeline recovers from E. coli, only to be struck with pneumonia. Her lungs fill with fluid and begin to collapse. She is placed on the Jet, a supportive ventilator that keeps Madeline’s lungs constantly open, but increases the damage to her lungs. A steroid treatment is recommended for Madeline’s lungs, though her risk of cerebral palsy will be increased. Josh and Amy give permission for the treatment, realizing that she will die without it:
This is it. This is the end. Right here. Right now. After all we’ve been through, we’re going to lose her to a puddle of water in her lungs. It’s so unbelievable.
“You know we have do it,” I say, flatly. “What else can we do? The risks won’t matter if she dies, otherwise.”
“Oh Amy!” Josh pulls me close.
I feel his chest heave with the silent, chunky sobs that don’t go anywhere, except to reverberate between my ribs. He’s been so strong, so calm, and quiet when I’ve melted down, but even he has his limit. “She’s so sick!” he whispers. “That oxygen dial, did you see it? It’s almost at the top. She’s going to die.”
Chapter 20: Immediately after the steroid treatment, Madeline shows signs of improvement. Some hope for her survival is offered. After several weeks, Madeline opens her eyes:
Two blue eyes—the deepest shade of blue I’ve ever seen, like Saskatoon berries hidden in the shadows on a low branch, or summer rain clouds darkened by the setting sun. Madeline gazes steadily at us, as if to say, “Who are you? What’s happened to me?”
It’s all too much. Josh and I hold hands and choke back tears.
“This wasn’t what we had planned, Sweetheart!” we whisper. “We’re so sorry—for the needles, for that ventilator tube down your throat, for those awful sensors ripping skin off you. We’re so sorry!”
She blinks her lashes, lovely long things that flicker over our only window into her soul. I wish she could smile, coo, and say she forgives us, but she doesn’t. She just looks pitiful and frail.
Amy holds Madeline for the first time:
Still just the size of a newborn golden retriever, Madeline stirs, pulling her head back, as if she wants to look around. Her eyes roll haphazardly around their sockets as her head flops back down against my chest. Her head rests just below my collarbone, so if I tuck my chin tightly I can just see her tiny face. It is unbelievable that a face as small and scruffy as hers belongs to a living, breathing human. She looks like a war-torn doll, a tornado-swept toy found along the side of the road, when the wind and rain have finally stopped. She’s dearly loved, but deeply damaged.
Chapter 21: Four months later, Madeline is discharged, after 112 days in hospital.
We walk through the NICU, past the resuscitation table, past the first incubator where Madeline lay struggling and fighting and hardly living at all. It’s a victory lap really—our child has beaten the odds—but we eye the family meeting room with sadness and nervously slip past the x-ray viewing station. We say one more round of goodbyes, but the nurses have already turned to their next tasks. Madeline’s sheets have been stripped off her crib; her paperwork is already on a cart, destined for the archives. The NICU has moved on and so must we.
A year later, a healthy, happy Madeline begins to walk:
Madeline perches on her tiptoes, giggling and drooling around her first two teeth. I lunge for the camera from the side table and drop to the floor.
“Ready!” I say, pressing the record button.
The red light flashes and, as if on cue, Madeline steps towards us. Arms stretched wide for balance, she teeters and totters haphazardly, but she does it. She walks.
Josh and I cheer, “Yay Baby! You can do it! Well done!” But we’re crying too. We’re overwhelmed with relief. Seeing Madeline walk affirms our greatest hopes for her. To be healthy, and strong, and enjoying life—that’s all we’ve ever wanted. And, if she can walk, what can’t she do?