StoriesPart of Hidden Bodies

The conditional child

Deanna Fei's second pregnancy ended suddenly at five months and her child was born weighing 700 grams. Considering a French essay from 1790 on the survival of premature babies, Deanna reflects on her experience and the question of what it means to sustain a life.

Words by Deanna Fei

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Photograph of a young woman standing behind a projected image of a page from an early printed book.
Deanna Fei, Thomas SG Farnetti. Source: Wellcome Collection. CC BY-NC.

L’enfant qui nait au cinquième mois de la grossesse, peut-il conserver la vie? (Can a child born in the fifth month of pregnancy survive?)

Alphonse LeRoy, 1790

Did you know I would be a boy?” my son Leo asks, apropos of nothing on this late-summer evening. “What did you think when you saw me? Did you already know my name?”

He pauses to shovel handfuls of raspberries into his mouth. I shush an anxious pulse in my chest. Mila, my five-year-old daughter, snuggles against me, nestling a raspberry onto each fingertip before she sets to eating them one by one. She’s serene-faced, sharp-eyed, always listening.

Her six-year-old brother wants to hear the story of how he was born. Every parent tells this story to their child. And to every child, it’s the story of how the universe began. So my husband and I recount the mundane details that culminated in our baby boy tunnelling into our arms like the most predestined journey of all time.

The cold rain on the morning of his due date, the contractions from the subway to the Mexican restaurant to the hospital lobby, the no-nonsense nurse who stayed past her shift to witness his triumphant arrival. That most elemental story, that most ordinary miracle: the birth of a new life.

Leo is still unsatisfied. He knows his sister’s arrival in the world a year later is a different kind of story, one still shadowed in weighted pauses, averted glances, eerie photos that we quickly flick past when they pop up unprompted, and maybe this is the only way he can think to bring it to light: “But were you so happy that I was a boy?”

“We would’ve loved any healthy baby,” my husband says. My heart lurches.

“So you didn’t love Mila?” my son asks.

Dans laquelle on expose quelques loix de la Nature, propres à donner quelques éclaircissemens sur CE QUE C’EST QUE LA VIE (In which we reveal some laws of Nature which give certain clarifications on WHAT IS LIFE)

Alphonse LeRoy, 1790

Maybe she doesn’t belong here

You could say, “It’s hard to explain.”

When your second pregnancy suddenly ends at five months with no warnings and no explanations, your body experiences something closer to death than birth. When your baby exits the womb weighing 700 grams, unable to feed or cry or breathe on her own, the word ‘catastrophic’ from a doctor’s lips sounds more fitting than any congratulations. When you’re told that the baby might not survive one month, one week, one night, you can’t help wondering if she’s your child, or only a conditional.

Did you deliver a baby or lose one?

The questions loom so much larger than the body. It – your baby girl – lies inside a glass box, enshrouded in a tangle of wires, attached to hulking machines. Twig-like limbs, unearthly swirls of ears, raw translucent skin. You strain to recognise the bruise-coloured slivers of her face, obscured by tubes and tape. You can’t look away. You can’t bear to look.

She shouldn’t be exposed to light and air yet. She shouldn’t be seen except through the fuzzy green magic of ultrasound. She should still be hidden inside your own body.

The official diagnosis is ‘extremely premature’: an understatement if you ever heard one. To you, she seems pre-alive.

More: See how you began.

L'enfant qui nait au cinquième mois de la grossesse peut-il conserver la vie? by M. Alphonse LeRoy. 1790.

You thought you knew what to expect when you were expecting. You thought of birth as a shining affirmation, not an existential question. You never imagined a human being so weightless and half-formed, teetering at the very edge of life, and though you can’t ever say this out loud – how could you? You’re the mother – you find yourself thinking that maybe she doesn’t belong here. Not like this.

How greedy you were when you were still pregnant, with your riotous one-year-old boy at home. You wanted a girl, a dragon spirit, a kind soul, with an innie belly button and lashes longer than your own. Now and then you’d catch yourself: of course none of that mattered. Of course you would love this baby unconditionally.

But maybe there was one condition: that this baby would live.

You try to tell yourself that if you lose this baby, you haven’t really lost a child. You’ve lost the potential of your pregnancy. You’ve lost a hypothetical child.

Then you reach into the incubator for the first time and touch your daughter’s hand – her fingers tiny as the fins of a minnow, the tendrils of a pea – and she holds on to your hand.

Mais plus on don attention à la Nature, plus on trouve de faits rares; et quand on rapproche le rare de l’habituel, on lève une partie du voile de la Nature, et l’on comprends ses loix. (But the more we study Nature, the more we find unusual occurrences; and when we compare the exceptional with the usual, we lift up a part of the veil of Nature, and we understand its laws.)

Alphonse LeRoy, 1790

Violations of the laws of nature

In France in 1790, lawyers argued that the survival of a premature baby was an impossibility, and proof that such an individual must be an illegitimate heir. But in the same year, a doctor named Alphonse Leroy concluded that the improbable survival of the very premature infant was a physical reality – and a portal to understanding that nature, by definition, breaks its own rules.

During the American eugenics movement of the early 1900s, premature infants were targeted as undesirable specimens of humanity, along with immigrants, the poor and people with developmental disabilities. And since the late 20th century, numerous articles and books with titles such as ‘Too Expensive to Treat?’ have bemoaned the high costs and unsettling technology involved in saving them. In recent years, policymakers in the UK, the US, Sweden and Australia have debated automatically denying medical treatment to the smallest babies.

You never imagined a human being so weightless and half-formed, teetering at the very edge of life.

It’s only human to recoil from these chimerical creatures, to view them as alien, wrong, violations of the laws of nature; to wish them out of sight and out of existence. But it’s also human to harness our resources to help them fight for survival. To see in them not only a stark challenge, but also an unexpected affirmation of our shared humanity.

Over centuries we have moved on from the most primitive attempts to resuscitate apparently lifeless newborns with corn cobs and ravens’ beaks, the first caesareans depicted in Chinese etchings, and the practice of tube feeding with reeds and animal bladders among ancient Egyptians. In the last hundred years incubators, ventilators, IV fluids and neonatal intensive care units have been invented.

But throughout, the history of how we care for premature babies is the story of how we navigate a fundamental medical, legal, political, ethical and philosophical question: what does it mean to sustain a life?

Learning to love with no guarantees

On this night, Leo has already jumped to another question. Another way to answer: it’s time for bed. I scoop Mila up in my arms – her legs dangle past my knees now, her arms around my neck hold her own weight – while I whisper into her ear. She whispers back.

The strange illuminates the ordinary. The merciless ways of nature spotlight the miracles. Babies like my daughter teach us that motherhood doesn’t mean delivering triumphs but learning to love with no guarantees.

When I reached into Mila’s incubator that first time, her tiny hand held on to mine. This sounds like the beginning of the happy ending, but it’s the most terrifying part. To love her was to brave the limbo in which her fate was suspended: between birth and death, between nature and science.

Over the next months, with every beep and oscillation of the machines, every puff of oxygen, every tube and wire, her life hung in the balance until she fought her way home.

Did we love her? We didn’t want to. That’s not the kind of birth story we know how to tell. That’s not how we think a life is supposed to begin – but every now and then, we need a reminder that to be alive is to live inside a question.

About the author

Photograph of Deanna Fei

Deanna Fei

Deanna Fei is author of ‘Girl in Glass: Dispatches From the Edge of Life’ (2015), about Mila’s journey from prematurity to health, and ‘A Thread of Sky’ (2010); her writing has appeared in the New York Times, TIME and Fortune, among others. She also works with non-profit organisations to raise awareness of the true tolls of prematurity.