Newborn Screening Quotes

Sometimes, Soraya Sleeping next to me, I lay in bed and listened to the screen door swinging open and shut with the breeze, to the crickets chirping in the yard. And I could almost feel the emptiness in Soraya's womb, like it was a living, breathing thing. It had seeped into our marriage, that emptiness, into our laughs, and our love-making. And late at night, in the darkness of our room, I'd feel it rising from Soraya and setting between us. Sleeping between us. Like a newborn child.

In this pilgrimage in search of modernity I lost my way at many points only to find myself again. I returned to the source and discovered that modernity is not outside but within us. It is today and the most ancient antiquity; it is tomorrow and the beginning of the world; it is a thousand years old and yet newborn. It speaks in Nahuatl, draws Chinese ideograms from the 9th century, and appears on the television screen. This intact present, recently unearthed, shakes off the dust of centuries, smiles and suddenly starts to fly, disappearing through the window. A simultaneous plurality of time and presence: modernity breaks with the immediate past only to recover an age-old past and transform a tiny fertility figure from the neolithic into our contemporary. We pursue modernity in her incessant metamorphoses yet we never manage to trap her. She always escapes: each encounter ends in flight. We embrace her and she disappears immediately: it was just a little air. It is the instant, that bird that is everywhere and nowhere. We want to trap it alive but it flaps its wings and vanishes in the form of a handful of syllables. We are left empty-handed. Then the doors of perception open slightly and the other time appears, the real one we were searching for without knowing it: the present, the presence.

And What Good Will Your Vanity Be When The Rapture Comes” says the man with a cart of empty bottles at the corner of church and lincoln while I stare into my phone and I say I know oh I know while trying to find the specific filter that will make the sun’s near-flawless descent look the way I might describe it in a poem and the man says the moment is already right in front of you and I say I know but everyone I love is not here and I mean here like on this street corner with me while I turn the sky a darker shade of red on my phone and I mean here like everyone I love who I can still touch and not pass my fingers through like the wind in a dream but I look up at the man and he is a kaleidoscope of shadows I mean his shadows have shadows and they are small and trailing behind him and I know then that everyone he loves is also not here and the man doesn’t ask but I still say hey man I’ve got nothing I’ve got nothing even though I have plenty to go home to and the sun is still hot even in its endless flirt with submission and the man’s palm has a small river inside I mean he has taken my hand now and here we are tethered and unmoving and the man says what color are you making the sky and I say what I might say in a poem I say all surrender ends in blood and he says what color are you making the sky and I say something bright enough to make people wish they were here and he squints towards the dancing shrapnel of dying light along a rooftop and he says I love things only as they are and I’m sure I did once too but I can’t prove it to anyone these days and he says the end isn’t always about what dies and I know I know or I knew once and now I write about beautiful things like I will never touch a beautiful thing again and the man looks me in the eyes and he points to the blue-orange vault over heaven’s gates and he says the face of everyone you miss is up there and I know I know I can’t see them but I know and he turns my face to the horizon and he says we don’t have much time left and I get that he means the time before the sun is finally through with its daily work or I think I get that but I still can’t stop trembling and I close my eyes and I am sobbing on the corner of church and lincoln and when I open my eyes the sun is plucking everyone who has chosen to love me from the clouds and carrying them into the light-drunk horizon and I am seeing this and I know I am seeing this the girl who kissed me as a boy in the dairy aisle of meijer while our parents shopped and the older boy on the basketball team who taught me how to make a good fist and swing it into the jaw of a bully and the friends who crawled to my porch in the summer of any year I have been alive they were all there I saw their faces and it was like I was given the eyes of a newborn again and once you know what it is to be lonely it is hard to unsee that which serves as a reminder that you were not always empty and I am gasping into the now-dark air and I pull my shirt up to wipe whatever tears are left and I see the man walking in the other direction and I chase him down and tap his arm and I say did you see it did you see it like I did and he turns and leans into the glow of a streetlamp and he is anchored by a single shadow now and he sneers and he says have we met and he scoffs and pushes his cart off into the night and I can hear the glass rattling even as I watch him become small and vanish and I look down at my phone and the sky on the screen is still blood red.

She took me into a little anteroom, near the entrance, and there lying on a table under a counterpane were four new-born babes. They had just been washed and put into long clothes. The counterpane was lifted off. They lay side by side, on their backs, four tiny wriggling mites, very red in the face, rather cross perhaps because they had been bathed, and very hungry. Their eyes seemed preternaturally large. They were so small, so helpless: you were forced to smile when you looked at them and at the same time you felt a lump in your throat.

Early pregnancy loss is important for our species. As many as 70% of human conceptions may never develop, and a third of recognized pregnancies terminate spontaneously through miscarriage. This extraordinary reproductive inefficiency has a compelling purpose: increasing the likelihood that fetuses surviving the natural winnowing of pregnancy are normal and healthy.14 This miscarriage screening process works well,15,16 and nearly all newborns are healthy as a result. From a biological perspective, induced abortion is an extension of miscarriage—a continued winnowing designed to ensure than children are well born….healthy, wanted, and loved.

I KNOW HOW THIS is going to sound, but Anthony Bourdain was the one who hooked me on Laos. Over the previous year, I had slipped further into insomnia—the accumulated effect of Benghazi stress and a hungry newborn keeping me awake for long stretches of each night. I’d fill that time lying on my couch in a darkened living room plowing through every episode of Bourdain’s various travel shows, over and over. I felt a sense of recognition in this guy wandering around the world, trying to find some temporary connection with other human beings living within their own histories. I’d been vaguely familiar with the story of Laos. Hillary had visited in 2012, and I remembered that we cobbled together some money for UXO clearance—a few numbers on a budget sheet. But the Bourdain episode that showed human beings on a television screen in the middle of the night, struggling in a place that was still a war zone, forty years after a war that I’d never learned about in school, woke my interest. I added two items to the bucket list for my final year in the job: Get more money for Laos, and get Obama to tape an episode of Parts Unknown with Anthony Bourdain.

The time to change the narrative around newborn screening for genetic health conditions has come. “Different” doesn’t mean “inferior” or diseased. With stories of real lived experiences, parents, advocates and clinicians can revise the story with acceptance and hope.