Baby E.R.

The Heroic doctors and Nurses Who Perform Medicine's Tiniest Miracles

“Come on, come on, you can do it,” Dr. Lupe Padilla urges the newborn girl whose heart hasn’t beat and whose lungs haven't breathed for twelve frantic minutes. She asks for a sixth and final dose of epi, a jumpstart for the baby's idle heart, a jolt of liquid electricity. The nurse stops her CPR and all the members of the neonatal crash team bend over the motionless infant splayed out before them, searching for a response, holding their breath, an eerie, silent pause....

— From Baby E.R.

With Baby E.R., Pulitzer-Prize winner Edward Humes tells the unforgettable story of wonder and hope that lies at medicine’s most cutting edge, where extraordinary healers and extraordinary patients come together to make miracles - in a place where lives are held, literally, in the palms of doctors’ hands.

For the parents of sick and premature babies, some weighing less than a pound and no bigger than a can of cola, the Neonatal Intensive Care Unit — the “Baby E.R.” — is their one bastion of hope during the most terrifying moments of their lives, when their children's very survival hangs in the balance. Given unprecedented access to this normally private world, Humes is able to reveal this poignant, dramatic and inspiring story through the eyes of the parents who lived through it, and who shared their innermost thoughts, joys and heartbreaks with him during the long days and nights at their babies' sides. Enter Baby E.R. with Humes as he attends the midnight deliveries, the harrowing Code Blues, the heart-wrenching setbacks; be there when a young mother first holds her son when he finally emerges from the incubator, and for the triumphant day of discharge, when families are at last made whole.

Set at Southern California's Long Beach Memorial Medical Center, home to one of the largest and most respected neonatal units in the nation, Baby E.R. is also the story of the uniquely gifted physicians, nurses and other healers who work medicine’s tiniest miracles, bringing life to a place where, for all but a minute fraction of human history, death has reigned supreme. More than any other part of the hospital, the neonatal unit has been transformed in recent years by revolutionary advances that have enabled impossibly small preemies not only to survive, but to thrive. Children born so early they would have been considered miscarriages fifteen years ago are now going home in their car seats thanks to state-of-the-art care; parents who would have faced unspeakable loss now have diapers to change. The bonds that develop along the way between these children, parents and their doctors and nurses is profound and moving, unique to this most human branch of the medical arts.

But there is also a cost to the wonders of technology and skill that preserve such fragile lives. Though joy is most often the result of this remarkable brand of medicine called neonatology, a life saved does not always lead to a life worth living. There can be burdens attached, sometimes grievous ones — raising difficult moral, ethical and financial questions. In a narrative both lyrical and intense, Humes does not skirt these tough questions, nor do the talented physicians at the center of Baby E.R., who must ask themselves not only how far they can go to save a child, but how far they should go. In an era when aggressive new fertility treatments have created an epidemic of high-risk multiple births, and one in ten babies in the U.S. is born premature, Baby E.R. provides a timely and compelling portrait of medicine’s brave new world.

Edward Humes, awarded the Pulitzer Prize for specialized reporting and the PEN Center USA West award for research nonfiction, is the author of five other books, including Mean Justice; No Matter How Loud I Shout: A Year in the Life of Juvenile Court; and Mississippi Mud. He lives in Southern California.

Riveting storytelling... Mr. Humes’s book is about hope, and the efforts, and sometimes miraculous achievements, of the extraordinary healers who work in the neonatal intensive care units, the “baby E.R.’s”

— New York Times, Science Times, Feb. 19, 2002. Read the full story

Coping with a premature birth or a seriously ill baby is devastating to parents. Instead of snuggling with a healthy newborn, they spend anxious days and nights in the neonatal intensive-care unit (NICU), where babies’ lives are in the hands of a remarkable group of doctors and nurses. These medical miracle workers are the heroes of “Baby ER” (320 pages. Simon & Schuster. $25), a moving account of life — and death — among the tiniest patients at the Long Beach Memorial Medical Center in California. Author Edward Humes writes from firsthand experience; his daughter ended up in the NICU when she developed a serious kidney infection. Humes deftly interweaves patients’ stories with the debate over medical and ethical questions. “In the NICU,” he writes, “the vexing question of when life begins, which has sparked so much anger and debate, pales next to the far more practical question of when survival can be imagined. Or should be.”

— Newsweek

A masterly job...Splendid reading...Humes transports us into a Lilliputian world of intravenous lines the size of human hairs... (and) does what only a good journalist can do: He transports us body and soul ...Great medical storytelling.

— New York Times

Eloquent... An affirming, often riveting book, and the families of the many children alive today because of an NICU will thank him for it.

— San Francisco Chronicle

A heart-stopping account of medical prowess, triumph and tragedy.

— Publishers Weekly

Humes once again takes readers on a powerful, timely and beautifully written journey to a place where the most basic questions of life play out daily, unseen. Baby E.R. is not only about the cutting edge of modern medicine and the life and politics of a big city hospital, but also about the human spirit, in all its resilience and fragility. This should be required reading for every couple considering infertility treatment, every health insurer and every parent. My first act upon finishing this book was to hug my kids.

— Shawn Hubler, Los Angeles Times

From Baby E.R.: Chapter One

Admission History and Physical:
Allman, BB
Day of Life……1
Day in NICU….1
Condition:…….Critical

Robert Allman races through the hospital hallway, following the plastic embossed signs leading him toward his son, a baby born far too soon, a frighteningly motionless child who had been swept from the delivery room inside the heated acrylic case of an premature infant transporter, bound for something called the “Nick-you.” That was how the nurses pronounced it, turning the acronym into words, confusing Robert until his stress-fogged mind pieced it together. Nick-you…. NICU. Neonatal Intensive Care Unit.

How could he have forgotten that? They had told him about the Nick-you, showed it to him, readied him for it — though that brief tour seemed a lifetime ago, which in a way it was. His son's life had not yet begun back then. Now the baby was here. And everything was going to hell.

Robert had thought himself prepared for this moment, but he wasn't, he realized, not even close. Both he and Amalia had been lulled by nine uneventful days of hospital bed rest, Amalia’s leaking amniotic fluid and premature labor stopped in its tracks by powerful drugs. They were buying precious time, the doctors said. Every extra day in the womb meant the baby’s survival chances increased. Each day they held out without rushing to the delivery room, each day Amalia spent confined to bed twenty-three hours a day like some prisoner in solitary, meant two less days in the Nick-you for the baby, the doctors said. If they could somehow hold out for six weeks, they’d be home free: The dangers and uncertainties of premature birth would vanish like a nightmare at daybreak.

And it had looked for a time like that might happen. Amalia Allman had been determined to keep that baby in, by sheer force of will if necessary. She had always been the strong one, Robert would say, the one who grew up first and who helped him do the same. Where he would have gone stark raving mad, she had settled in with her books, her cross-stitching, his Game Boy, camped out for the long haul. When she made it past the first forty-eight hours, a nurse told her she was over the hump: Half the premature labor cases never made it to this point ­ she was doing great.

But today, day ten, out of nowhere, the contractions kicked back in with a vengeance, excruciating and insistent, unstoppable this time despite the IVs, the breathing exercises, the prayers. The delivery had been awful. Despite the baby’s half-normal size, his shoulders were turned in such a way that he became stuck. The neonatologist stood poised at the foot of the operating table to receive him, standing there with a blue warming blanket in hand, waiting, waiting, exchanging worried glances with her nurse as the obstetrician struggled to extract the little boy. The fragile baby had been bruised head to toe in the process, his head pulled into a frightening cone by the force of the vacuum extractor used to wrest him from the womb. He had cried, but just for a moment. Then the neonatal team went to work, the cries silenced by a plastic tube and the sudden, searing flow of pure oxygen down his small throat.

Now all Robert could think of were the stuffed animals he hadn’t had time to buy, the baby’s room that was nowhere near ready, the sheer normalcy of their shattered plans ­ all of it contrasted with the image of that tiny bruised baby, oh God he was so bruised, who didn’t cry or move or even look quite real as he entered the world. Everything else fled from his head. He and Amalia barely had gotten a look at him. Holding their new child had been out of the question: He was headed to Baby E.R.

Now Robert simply wants to find him, the vivid cartoon characters and nursery verse adorning the corridors of the children’s hospital passing by in a surreal blur. Go, Amalia had told him as they stitched her up. I’ll be fine. Just go. Stay with him. And so he dodges visitors and gurneys, desperate and helpless and alone, running toward his new son, toward the unknown.

Chapter Two

Loud, bright and bristling with technology, Room 288 is the heart of the NICU, the starting point for the newest, the smallest and the sickest patients, the most “intensive” room in the five-room, seventy-one bed Infant Special Care unit at Miller Children’s Hospital. The most extraordinary medicine happens here, practiced upon some of the most extraordinary patients there are, yet it is a place shrouded in mystery, closed off from view except for the doctors and nurses who love it, and the parents who wish their children could be anywhere else but here.

Enter and find a room perpetually in motion. The neonatologists and their apprentices gather for rounds, a shuffling of feet and notepads, of last minute phone calls and just one more hurried entry in a sick child’s chart. RTs — respiratory therapists — move from baby to baby as they adjust ventilator pressures and oxygen flows, responding to alarms and looking for the mottled colors or heaving chests of babies approaching asphyxia. Lab techs come and go, drawing tiny blood samples with deft sticks to babies’ heels. Medical specialists from cardiology, ophthalmology, neurology and a host of other -ologies perch on stools as they page through charts and scribble notes and recommendations. Other doctors perform treatments and even surgeries right in the room, many of them wearing magnifying binoculars, bent over their work like watchmakers, so small are their patients’ organs and vessels. Pharmacists calculate medication dosages at bedside while nutritionists figure the correct intravenous feeding solutions, walking a biochemical tightrope to balance the delicate but volatile blood chemistry of premature infants. Ultrasound technicians push unwieldy contraptions into position to capture ghostly images of tiny brains and hearts and kidneys, the organs swimming in and out of focus on small video screens as the techs move their magic wands over their patients. And everyone scurries to the other side of the room when a lead-aproned expert from radiology muscles her portable X-ray cart into position, shouts, ”Shooting,” then fires the machine up. Whenever possible, the hospital comes to the babies rather than the other way around, which is a good thing for these fragile patients, for whom the typical bumpy ride to radiology or cardiology might be fatal. But as a result, the fifty-by-thirty-foot room at times seems ready to burst, an overpopulated school of fish swimming in all directions at once.

At the center of this activity are, of course, the babies, though they often seem dwarfed, even lost, amid the technology keeping them alive. Only twelve kids can fit in this room at any one time because of the enormous bulk of equipment tiny preemies and critically ill newborns require, along with the enormous manpower required to deal with this dozen patients ­ eight or more nurses, two respiratory therapists, an attending physician, a neonatal fellow and a medical resident. The room was designed for the equipment of the Seventies, but Nineties-era computers, monitors, ventilators and other space-hungry devices have taken over much of the white Formica counter space and open floor areas. Now the bodies and equipment barely seem to fit, and walking (or running) without jostling the babies requires of the staff an almost balletic precision.

Each child lies inside an Isolette incubator, a clear acrylic rectangle with ample room for a half-sized premature baby, though the quarters become tight for the full-term eight-pounders. The tiny preemies that make up the bulk of the children in this room, many weighing less than two pounds, are displayed on cottony white bedding like wrinkled brown gems in a jewel case, bright jaundice-killing “billi lights” shining down on them like museum spotlights. Each Isolette’s plastic casing and the baby inside sit atop a large blue and beige metal box on wheels, knobbed with heating controls, humidifier settings and an array of sensors, plugs and conduits, the umbilici of technology. The incubators have portals of various sizes for admitting IV lines, wires, ventilator hoses and hands. The front panels flip down and the bedding trays, which can lie flat or at an incline, slide in and out like kitchen cabinet drawers, allowing easy access to the patient inside ­ every incubator is, in essence, a miniature operating theatre. The incubators are not sound proof, however; depending on the type of equipment in use, especially the ventilators and their various pumps and pistons, the interior of these life-saving islands of machinery can actually become the noisiest places in the room. Oftentimes, the nurses must put miniature ear-protectors on the children, bright orange, like airport baggage handlers’, to keep them from being overwhelmed by their new environment, or even deafened.

Room 288 is not only a place of continual motion. It also is a place perpetually filled with sound, the thrumming cacophony of an orchestra badly in need of a tune. There is the distinctive timpani chug of the oscillating ventilators hooked to the patients with the most fragile and damaged lungs, offset by the snare-drum whoosh and whisper of the conventional vents and the train-engine chug and rain-stick patter of another type of breathing machine, the high-frequency jet. Several times a minute, the high-pitched electronic bell of a cardiac monitor signals a heart beat too slow or too fast. Newcomers to the unit jump each time these warnings sound, but the old hands know the majority of them are false alarms caused by a baby’s random kick or yawn that jogs the sensors. These alarms are often coupled with the soprano chime of pulseoximeter sensors signaling too much or too little oxygen saturation in the bloodstream ­ a type of warning less likely to be a false alarm and more likely to generate an immediate response from a nurse or respiratory therapist concerned about a baby’s “sats.” Tenor and baritone bells signal blood pressure drops or respiratory failure. In the background, there is a constant beat of electronic bleats emanating from Christmas-tree-like formations of digital drug infusion pumps, hung by the dozen from chrome-plated poles throughout the unit, and hooked into the babies by foot after foot of clear plastic tubes that wind around and inside the Isolettes, which have their own temperature and humidity alarm sounds. Overlaid on this mechanical din is the constant buzz of conversation among nurses, doctors and staff, some of it business, some of it social ­ the latest movie, the latest reason to rag on the hospital administration, and the latest bit of unit gossip merging with talk of resuscitation, developmental delays and “Is it real?” inquiries about some alarm or other sounding in the unit. All of this is periodically punctuated and drowned out by the crescendo cough of the cursed Stentofon, a wall-mounted speaker system that regularly bellows urgent requests for a neonatal team in the O.R., the women’s hospital or the Emergency Room, with a sound quality only slightly less pleasing than the drive-thru at Jack-in-the-Box, and a nasty habit of making the ordinary sound critical and a crisis appear to be routine. And in the background, whenever the main entrance door to 288 opens, the aluminum scrub sinks just outside the room with their timer-controlled faucets add a metallic pounding to the din.

None of the noise, light and bustle is good for the hypersensitive systems of premature babies ­ just the opposite, in fact ­ but no one has yet figured out how to build a dark, silent intensive care room. It would be like trying to make flying safer by fashioning an airplane out of a Sherman Tank. Theoretically, such a craft could survive any crash. But it would never get off the ground.

There is only one sound missing from this hi-tech orchestra, one that should be most common in a nursery: the sound of babies crying. With oxygen-carrying endotracheal tubes eased down small throats and through vocal cords, and with infants sedated or placed in a drug-induced paralysis or just terribly weak, crying is rarely heard. And when it is, the sound startles the nurses and doctors more than any alarm, for crying is out of place here: A baby strong enough to cry is almost always too well for Room 288. There are four other rooms for babies who can cry — the intermediate care “step-down” rooms, or one of the other less intensive sections of the NICU, where babies are moved once they near wellness, or at least discharge. The staff calls these least intensive areas the “Fat Farm,” because the major activity inside is eating and gaining weight (which is trickier than it sounds for a preemie, whose digestive system is more sluggish than a hospital bureaucracy). Room 288, though, that’s for the new kids, the sick kids. Most of them lose weight in here.

Into this maelstrom come all new admissions to the NICU, most of them premature babies, all of them in critical condition. They tiniest preemies need months of care before they are ready to go home ­ usually around their mother’s original due date, when they finally get to the place where they should have been all along. Other patients are in for a spectrum of ailments ranging from the minor to the harrowing: infections, jaundice, lung problems, heart conditions, birth defects or asphyxia. They stay anywhere from three days to four months, with a few ­ particularly the kids with damaged lungs ­ lingering long enough for birthday cake, though this is far less common than it was ten years ago ...

With the arrival of Amalia Allman’s premature son, there are twelve babies in Room 288, all of them sick, all of them challenging, none of them with fates easily predicted. Statistics suggest what is likely in each case, but in this room, more times than not, probabilities lose their meaning. No one who spends time here can say, with any degree of certainty, that this child has no hope, while that one hasn’t a care in the world. The doctors and nurses have seen too many reversals of fortune, in both directions, to ever speak in absolutes. For good and ill, the NICU is a place of infinite possibility.

It will take three or four months before those possibilities narrow and the only question that really matters ­ the one the parents always ask: Will my baby be okay? ­ can finally be answered with some confidence. That’s how long it will take for the premature babies in the room to reach their original due dates and to catch up with nature. That’s how long it will take for the treatments and surgeries and therapies to be concluded for the others, for the nurses and the doctors to become attached to their small charges and their families, for the bonds between parent and child to form and grow strong, for medicine’s most cutting edge ­ a half million dollars’ worth or more for the sickest among them ­ to work its miracles.

And after all that, after so much science and heart and love and plain, unadulterated luck is thrown into the mix, eight of the babies in the room this day will go home in their car seats with their parents. And four will not.

Before you choose a hospital, read this additional excerpt from Baby ER.

Baby ER: the 411 on neonatal care, prematurity, newborn ailments, surviving the NICU, and more

Part of the mission of this Web site is to provide just that sort of information — in the form of links to expert resources, and a basic FAQ on prematurity, illnesses that can affect babies, and the inner workings of the NICU.

You can help make this as valuable resource as possible: To comment or to suggest additions, please contact: BabyER@edwardhumes.com

Start Here: Quick help for parents

• A Q&A for Parents of Critically Ill Newborns
  
• Ten Basic Questions Every Parent Should Ask In the NICU
  
• Common newborn ailments: a glossary
  
• Who works in the NICU: a guide
  
• Reading your baby's chart: common medications and medical terms in the NICU

Dig Deeper: Learn more

• General neonatal facts and history
  
• Preemie and NICU parenting info
  
• Cerebral palsy and other neurological problems seen in NICU babies
  
• Retinopathy of Prematurity (ROP)
  
• Congenital Conditions
  
• Other ailments in and after the NICU; grieving