Micro Miracle: A True Story

Micro Miracle

A True Story

Amy Boyes

© 2019, Amy Boyes

All rights reserved. No part of this book may be reproduced, for any reason, by any means, without the permission of the publisher.

Cover design by Doowah Design.

Photo of Amy Boyes by Eva Wong.

We acknowledge the support of the Canada Council for the Arts and the Manitoba Arts Council for our publishing program.

Library and Archives Canada Cataloguing in Publication

Boyes, Amy, 1985-, author

    Micro miracle : a true story / Amy Boyes.

Issued in print and electronic formats.

ISBN 978-1-77324-037-4 (softcover).--ISBN 978-1-77324-038-1 (EPUB)

    1. Boyes, Amy, 1985-.  2. Mothers of prematurely born children--Canada--Biography. 3. Premature infants--Canada--Biography.

4. Premature infants--Care.  I. Title.

RJ250.B694 2018    618.92’011092    C2018-905148-5

     C2018-905149-3

Signature Editions

P.O. Box 206, RPO Corydon, Winnipeg, Manitoba, R3M 3S7

www.signature-editions.com

To Madeline

I hope you feel my love on every page

Contents

Introduction

Chapter 1

Chapter 2

Chapter 3

Chapter 4

Chapter 5

Chapter 6

Chapter 7

Chapter 8

Chapter 9

Chapter 10

Chapter 11

Chapter 12

Chapter 13

Chapter 14

Chapter 15

Chapter 16

Chapter 17

Chapter 18

Chapter 19

Chapter 20

Chapter 21

Introduction

Most babies born sixteen weeks early are not expected to survive without disabilities or developmental delays. Although outcomes for extremely premature infants have improved dramatically in recent years, even today, 40–50% of infants born fourteen to fifteen weeks early will die shortly after birth. Of the remainder, as many as 75% will suffer disabilities and delays (Morse, Zheng, Tang, & Roth, 2009; Petrini et al., 2009). 

In many countries, maternal and infant health care suffers from inadequate funding and resources. Costs for months of hospitalization, testing, and surgeries can quickly reach into the hundreds of thousands. Even in some developed countries, parents have to consider their insurance and health care benefits when deciding whether to resuscitate a premature infant or allow the infant to pass away without intervention. In Canada, public health care eliminates the need for private insurance or work-place health benefits for primary care.

This story is an example of how the smallest, most fragile citizen is valued in a civilized society. The essence of our humanity is shown by how we treat those who cannot help themselves, especially when the costs and risks are high.

She doesn’t look like a baby. She looks like a missing link between an embryo sketch and a wide-eyed Gerber baby. She has a complete assemblage of infant anatomy, yet she falters, functioning only at the pleasure of machines.

I read the birth record taped to her incubator as if it were a description on a museum display case:

Madeline Boyes

24 weeks gestational age

16 weeks premature

1 pound, 6 ounces, 12 inches long

I watch for signs of life, but there aren’t any. Instead, I take the word of machines, beeping out evidence in long electronic lines, that she’s alive.

She lies still, her wrinkled limbs flopped across a stiff flannel sheet. A sunshine-yellow toque covers her tennis ball–sized head. Her tiny bits of ears peek out from under the toque’s 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 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. Her fragility disturbs me. I’m overwhelmed by her helplessness.

I inhale deeply, trying to stop the room from spinning. Gripping the side of the incubator, I whisper through the Plexiglas pane that separates us, I love you, Madeline.

She opens her mouth in a silent scream and claws at the air with thin fingers. She seems resentful of being ripped from the nurturing womb and plopped onto a drafty resuscitation table. She can’t be cared for like other babies and she can’t be put back where she came from. She’s been pushed into the world and declared a baby, but I cannot accept the declaration. She’s too wrinkled and half-formed. How will she survive? It isn’t possible.

But in this dark, hushed ward, this endless cavern of incubators lit by a dozen machines all churning out life, a steely-nerved nurse takes my shaking hands, stares into my exhausted eyes, and says calmly, Good evening, Mrs. Boyes, and welcome to the Neonatology Intensive Care Unit. I understand you’ve just given birth. I know she’s a bit of shock, but she’s your baby. She’s your Madeline.

Chapter 1

One August afternoon, the summer before, I set off on the Katimavik footpath. Although the Ottawa Greenbelt has other paths, paths that can compete for solitude and scenery with those of the Gatineau Hills or the Adirondack Mountains, we residents of suburban Kanata are content to walk the cracked pavement which lies behind our own backyards. Maybe busy residents appreciate the path for its closeness, freeing them from driving to remote parking lots; sociable residents, for the ease with which new acquaintances can be made, a quick hello turning into a lifelong friendship; and dog-walking residents, for the aromatic garbage bins which overflow with bulging plastic bags tied in elaborate knots.

I like to walk the path in a wide, four-kilometre loop. Perhaps other regulars recognize me by my blonde ponytail swinging from side to side or by my gaudy fuchsia flip-flops slapping the asphalt. Indeed, recognizing a fellow path-walker is almost as affirming as having your Toronto cousin breeze into town and compliment you on your toned calves. You’re assured of your own discipline much more pleasantly than if you simply checked off a box on an unwieldy exercise chart.

When I begin my walk, the sun is already sinking. There’s no reason why I didn’t go earlier—I’m on summer holiday from teaching and had spent the day as I pleased—but the day had been warm, so I delayed my walk until leaves rustled with a hint of breeze and long shadows formed.

Summer in Ottawa can be oppressive. Unlike the dry prairie heat I grew up with, Ottawa’s heat sits heavily, damp and suffocating. But the ferocity of summer is mirrored by the unpleasantness of winter, and the knowledge that summer will soon end drives me out of our air-conditioned house and onto the footpath.

The footpath has no obvious design. It’s just a series of interconnected trails that were paved during a decade of residential development. It begins close to our house, under a power line, and weaves around faded play structures, boulders landscaped into the general impression of Stonehenge, and weathered wooden benches built low to the ground, initialled by les enfants terribles long since fled from the suburbs. Every so often, the path pops out of parkland to cross a street. But mostly the path is sheltered from staring, bored residents bobbing on backyard pool floats by a corridor of dogwoods, elms, and maples. Between the trees, light-deprived wildflowers spring up on gangly stems while, here and there, crisp leaves anticipate autumn, wafting down to the path below. It’s a peaceful path, a respite from the city within the city.

I occasionally dare myself to jog, albeit never for very long. I want to be reasonably fit, but without too much exertion. How I am to balance slothfulness and fitness, I haven’t considered, but daily walks seem like a good idea. As a consistent size six, I naively believe I can take a cavalier approach to fitness, leaving the hard work for those that wander the racks of Addition Elle.

If asked why I walk, I might refer to the benefits of fresh air and sunshine. But as I flip-flop down the path, the late afternoon sun speckling gold shadows over the charcoal pavement, I consider my other reason for walking: I want a baby—a bright-eyed, rosy-cheeked baby—and I want a strong body to carry it in. I’ve read magazine articles about labour and the post-pregnancy body, and they all encourage a pre-pregnancy fitness regime. The baby is healthier and the mother is happier. Labour might even be easier. So I walk and, as I walk, I think about a baby.

I’ve always imagined I’d be a mother at some point in my life. Childbearing seems inevitable, like finishing a degree or planning for retirement. It’s what people do and, viewed from a distance, the process seems reasonable.

My husband Josh and I spent the first years of our marriage ignoring our parents’ sly inquiries after grandchildren, confining our own discussions of babies to quiet whispers while drifting off to sleep or quick quips while speed-walking past the playground. Although we liked the idea of a baby, a cheerful cherub straight from the Pampers ads—who wouldn’t?—we had a mortgage and careers to consider. But now, we’re two and half years into our marriage. He works as an assistant to a Member of Parliament in the House of Commons; I, as a music teacher. We’ve saved some money. We have a house with a wee yard. We’re over the worst of the nitpicky scrappiness that accompanies any two people sharing a roof for the first time, and we’re both near thirty. It’s as good a time as any to have a baby—why not?

But as I rest on a bench for a minute and watch the leaves drift and float, I’m struck by how presumptuous the idea feels. By deciding to create a life, we’re also assuming we have the talents and skills necessary to nurture a life. From that perspective, having a child seems audacious, arrogant even. Why do we imagine we’re qualified to raise a child?

My parents had kids though. And their parents too. They don’t seem to regret it. In fact, they seem sure of themselves, confident, authoritative. They always have the answers to life’s questions. They’re not riddled with self-doubt. Besides, if they and everyone else thought as hard about having children as I’m thinking, the earth’s population would cease to grow. Every responsible, sane person would look over the brink and back away carefully. No one would commit themselves to such risk-taking. For what else is childbearing but supreme risk-taking?

My mom, a no-nonsense farm wife, would say having children was the natural thing to do. Just get on with it—I can hear her voice in my head—People have kids. It’s what we do. And she’s probably right. The wisdom of her advice is evidenced by its simplicity.

I listen to the sounds of a neighbourhood returning from work, cooking suppers, walking dogs. The sounds are innocuous and fragmented but, put together, the car doors slamming, the cannonballs splashing, and the barbeque lids thumping are all part of life, one day after another. There’s a comfort in these sounds, in the momentum that carries us from one year to the next, from one generation to another. Our lives wouldn’t be the same without little people running through them. Audacious or not, Josh and I would always regret not having a child. Despite my qualms, I know it.

I pick a crunchy oak leaf off my shoulder and walk on, toward the curve in the trail that will eventually lead me home.

• • •

It doesn’t take long for the heat of August to disappear. Winter comes, swift and sure as it always does, and as the days grow shorter I have suspicions. One morning in early November, I tear the packaging off a test strip and proceed as directed on the side of the pink box: Insert into cup for five seconds. Wait three minutes.

It doesn’t take three minutes. One pink line instantly appears and, a moment later, another line faintly traces across the screen. Half the width of the first, the second line is the life-changer. Apparently, I’m pregnant.

I stare at my reflection in the toothpaste-spotted mirror, half expecting a Madonna-like halo to form above my head. I feel peace and panic, both at once. The long-awaited game is on, and I already feel a shift in my thinking. It’s as if I’ve stepped out of one section of a timeline into another, like Mozart in the textbooks, launching the Classical era, leaving the Baroque behind. I am leaving the land of carefree maidens, venturing somewhere new, somewhere with curvaceous women and general exhaustion.

When Josh comes home from work, I meet him at the door and with the tiniest bit of nervousness whisper my news.

Oh, Babe, he sighs and grins like he knew all along. He pulls me close and I lay my head on his shoulder. You’re going to make a wonderful mother, he whispers, kissing my neck, wiping his eyes.

It’s hard to imagine! I laugh and then call myself, for the very first time, Mom.

Chapter 2

There’s blood.

Eight weeks pregnant and there’s blood. There isn’t much, but it doesn’t take much blood to cause alarm. A little smudge, a little pink. Mostly pale. Watered down. Maybe it’s innocent, but I feel panic.

I’ve had a rough start to my pregnancy. Every morning, noon, and occasionally night, I throw up into a water pitcher, gripping the handle as the contents of my stomach splash below. Then I lie still, breathing softly, savouring ten minutes of stillness before the wretchedness begins again.

One day, early in my pregnancy, I decided there had to be a cure for the misery and went online to find it. But throughout the last hundred years, so many typewriters and keyboards have punched out words of advice to the pregnant that the resulting wisdom is a tangled web of nonsense. Indeed, the astronomical number of results that popped onto my screen when I searched Amazon for pregnancy guides made me want to swipe the laptop shut and take a nap. But I persevered, ordering a classic guide that has remained unchallenged on forty years of bestseller lists.

And when it arrived, two business days later, I flipped to the nausea section with anticipation, only to read that a few crackers and fresh air would soon set me right.

Unfortunately, I threw up before, during, and after those crackers. In fact, crackers seemed to only increase the ferocity of my vomiting. I gave up on crackers, tossed the pregnancy guide under the bed, and called my mother. She recommended chopped fruit, which I tried and promptly threw up. She then suggested a small glass of milk, which descended and ascended even before it lost its chill in my stomach.

I inquired of older friends, but discovered that women are mostly divided into two equally unhelpful camps. There are the deathly ill while pregnant who console you with—Nothing works, dear. I threw up three times a day for nine months with all my four children. You hold on and wait for it to be over—and the perky ones who had sunshine pregnancies—I LOVED being pregnant! My skin was so soft and I had so much positive energy.

I decided it was hopeless and I just had to wait for time to pass, nauseated or not. But now time has passed.

It’s December and there’s blood. I consult the pregnancy guides and to my dismay find advice that runs the gamut from Early bleeding is fairly common and is nothing to worry about, to Half the women who bleed during the first twelve weeks eventually miscarry though not necessarily at the same time they experience bleeding. The more I read, the more variations on the theme of miscarriage emerge. It seems that every condition, every symptom has the potential to be lethal. But as the authors reach that mortal climax, the column comes to an end, the sidebar drops away, and the subject changes. Next chapter!

I watch the splotches for a day or two, worrying over them, wishing them away. Josh tries to comfort me: It’s likely nothing, Babe. These things happen. But since he doesn’t know, and neither do I, I call my doctor, trying to sound like I have it all together.

Is this anything to be concerned about? I ask, my voice quavering.

Don’t stress! my doctor replies cheerfully as It’s the Most Wonderful Time of the Year plays in the background. I’ll send you for an ultrasound and if the cervix is strong and the heart is beating, you’ve got nothing to worry about!

She doesn’t sound alarmed; in fact, she sounds downright chirpy. But is it because my symptoms are no cause for concern or because she’s getting ready to leave on her Christmas vacation? Still, as I hang up the phone, I feel like I have a better perspective on the situation. There are