Fei - Girl in glass: dispatches from the edge of life

A Thread of Sky: A Novel

For Leo and Mila

My first child, my son, arrived in the world as the most ordinary kind of miracle: the radiant perfection in the birth of a baby. Thirteen months later, my second child exited my body much too soon and was rescued by doctors, encased in glass, and attached to machines. This baby, my daughter, seemed fated to be a tragic outcomeunless, by an act of divine intervention, she turned out to be a miracle child.

Her odds overshadowed her existence. Her life was suspended between birth and death, hope and fear, nature and science. Each moment that she survived carried her not toward a promised future, but further into limbo.

One year after I brought my daughter home from the hospital, just as I allowed myself to believe that she had defied the odds, the CEO of a large American companymy husbands employerpublicly blamed her for his decision to cut employee benefits. He used an unlikely phrase that soon generated countless headlines and became a social media meme: distressed babies. A phrase that exposed everything I had tried to forget.

Amid a media firestorm, I came forward to tell my daughters story for the first time, to defend her right to the care that saved her life. The story went viral; the CEO issued an apology, and I forgave him; the news cycle turned anew.

Yet in the wake of the controversy, as I found myself reading an outpouring of messages from strangers across the country, I realized Id only just begun to understand how my daughter had made her way home.

Many of those who wrote to me to embrace the story of my daughters birth also entrusted me with stories of their own. Stories of being targeted by employers for needing medical care, of suffering similar exposure without having drawn attention from the media, of navigating the journeys of their own distressed babiesco-opting the term with dignity and pride. Stories that called upon me to seek a measure of recognition for them, too.

Thus began an unexpected journey of my own to explore the broader sweep of my daughters storyand the value of a human life. From the spreadsheets wielded by cost-cutting executives to the imperiled state of our right to medical privacy; from the insidious notions of risk surrounding modern pregnancy to the dangerous distortions of the basic concept of insurance that have become endemic in our society; from the wondrous history of medical innovation in the care of premature infants to contemporary analyses of what their lives are worth; and finally, to the heart of how love takes hold when a birth challenges our fundamental beliefs about how life is supposed to begin.

Lay your sleeping head, my love,

Human on my faithless arm;

Time and fevers burn away

Individual beauty from

Thoughtful children, and the grave

Proves the child ephemeral:

But in my arms till break of day

Let the living creature lie,

Mortal, guilty, but to me

The entirely beautiful.

W. H. AUDEN , LULLABY

OCTOBER 2012

The second night after my baby daughter arrivesI still struggle to say she was bornshe comes to me in a dream. Im curled up in the hospital bed, sleeping in a fetal position, when I feel a tiny hand between my palms.

In reality, my baby is not with me. I cant hold her at all. Her bed lies one floor above mine, behind a locked steel door, walled in glass, obscured by a tangle of tubes and wires and machinery.

What little there is of her to look at, I can hardly bear to see. When I manage to look, the thought that grips me is this: She isnt meant to be here. Let her go.

She weighs one pound nine ounces. She cant cry or nurse or breathe. Her head is too large, her ears barely formed. Her legs look like those of a decrepit old woman or a starving child, the skin shriveled and sagging over twigs of bone.

Her skin is purplish red, bloody and bruised. One doctor, visibly shaken, describes it as gelatinous.

Why shouldnt it be? No part of her is supposed to function out here. She is still supposed to be part of me.

Just two nights ago, I went to bed at home, still pregnant. Twenty-five weeks into a perfect pregnancy. Until four thirty A.M. , when I woke up in acute pain.

I swallow a handful of antacids. My husband leaves for the airport. I try to go back to sleep. Only when I hear myself gasp God help me do I pick up the phone.

My obstetrician tells me to head to the hospital. I say that I cant leave my babymeaning Leo, my one-year-old sonhome by himself.

Leo is just waking up, talking to his reflection in the crib mirror. When I open his door, he beams his exuberant, roguish grin. I unzip his sleep sack, kiss his fat cheeks, change his diaper. He plunks himself on my lap to guzzle a sippy cup of milk. The pain is escalating, punctuated by waves of tremendous pressure. I stifle a cry into my baby boys thick hair.

After call upon call, our babysitter is still half an hour away. Peters cousin on the fourth floor, roused from bed, runs down the stairs. Leos grin fades to a bewildered sob as I put him back in his crib with a bowl of Cheerios and grapes.

In a cab on my way to the hospital, alone in the backseat, my mouth clamped shut and my feet braced against the floor, I will myself to hold it in: the pain, my pregnancy, this life Im supposed to be nurturing.

Then I see the blood, and I know Im failing.

My baby girl. Shes not going to become a baby. Shes slipping away, and there is nothing I can do to hold on to her. This is a sudden, primal knowledge, one that steels me through each red light, the drivers sidelong glances, another red light, and another.

Im having a miscarriage, I tell myself. I dont know this baby yet. Miscarriages happen.

Through the sunlit lobby, the leisurely elevator, each turn of the long white corridors. Past myriad impassive faces and swinging doors. Through the masked introductions. The blur of fluorescent ceiling lights. The probing of gloved hands. The yanking of curtains.

I know that its over. The first sonogram, that tiny upside-down gummy bear. Those first little flutters morphing into impassioned jabs and kicks. The anatomy scan: the pulsating heart, the primitive profile, the ten fingers and toes, Peters exultation, my mothers tears of joy when I told her the news: a girl.

A girl who took us by stealth. A girl whod hold her own against Leo, the fiercest creature Ive ever known. A girl who would arrive just in time for the tail end of the year of the dragon. A beautiful girl who would complete our family. Our baby girl.

All that is over. Now Im just waiting for the ordeal to end.

This isnt the worst thing in the world, I tell myself.

The long, sharp slice. The glowing orange cave of anesthesia. Im grateful to enter that cave. Im not sure I ever want to come out.

The ticking of a clock in a quiet room. The hand of my husband. It takes us a while to ask what happened to the baby.

An incomprehensible situation becomes surreal. My obstetrician, Dr. Bryant, shows up with a jaunty manner. An attendant leads Peter off, with a perky command to have a camera ready. Im wheeled into the postpartum wingthe same place where I presented my honey-gold, lush-haired son thirteen months ago, receiving congratulations at every turn.

This time, my arms are empty. Yet people smile at me and say, Congratulations!

I try to smile back and say thank you. They seem to be performing an elaborate charade for my sake, and since I cant sit up or walk or swallow a sip of water on my ownsince the smallest unadvised movement threatens to rip me open at the seamsI do my best to play along.