In One Corner of the NICU
by Edward Humes
In one corner of the NICU, a mother of triplet boys, born 24 weeks after their in vitro fertilization, sobs into the shoulder of her babies' neonatologist. She has just decided to sign a Do Not Resuscitate order for one of her sons, his body wedded to an oscillating ventilator, wracked by constant infections, painfully bloated from three days of renal failure.
It will not be the last time she will have to make such a decision.
Less than twelve feet away, another mother – who turned eighteen that day herself -- struggles to comprehend the devastation her 25-weeker son faces from the massive intracranial hemorrhage that has nearly killed him. The newborn's neonatologist – chief of staff at the Miller Children's Hospital in Long Beach, California – painstakingly explains the nature of IVHs, along with the likely poor outcome and quality of life the boy faces because of the severity of the bleed. The doctor gently suggests that, perhaps, it might be best to step back and let nature take its course, rather than pursue heroic treatments that might do little more than prolong her son's pain. The mother stares at her blankly, clearly comprehending not a word, then asks, Can I put some toys in the incubator? He can have toys, can't he?
Out at the reception desk, a three-year old girl has come to visit her old nurses. She is tiny, the size of a one-year-old, with thick eyeglasses and a slow, rolling gait and a huge, pearly smile. She had been born in this hospital at 27 weeks, weighing a mere thirteen ounces. The nurses have an old picture of her dad – the burly man beaming at her side today – slipping his wedding band onto the tiny baby's emaciated arm. The ring slid clear to her shoulder, no problem. She was not expected to live. Her life was supposed to be painful, limited, joyless.
Today, at age three, she can already read and write. She is brilliant, happy. A miracle.
Later, back in the intensive room, a woman who suffered a placental abruption after slamming cocaine in order to speed her daughter's delivery and reduce her own labor pains, stands next to the warming unit holding her full-term infant. The global ischemic brain damage suffered by this otherwise perfect child has left her little more than a vegetable. Her body is wracked by seizures. At the moment, her vital signs are weak and erratic – a window of opportunity, the neonatal team knows, during which she could just slip away. Every member of the team believes this would be the best course. But the mother who destroyed her child -- as surely as if she had struck the baby in the head with a hammer – insists that everything possible be done to preserve the baby's life. And so the team does just that. The mother has committed no statutory crime, no child abuse under California law, and absent a court order – which would take hours, if not days, to obtain -- her rights in this matter appear absolute. Indeed, she could sue the hospital for withholding treatment. And so the child is intubated and repeatedly resuscitated, stabilized to face a sightless, mindless future of g-tubes and seizures and atrophied limbs.
Only later does the treatment team learn the history behind this case, when a relative blurts out the shameful story: This is the third drug-devastated child brought into the world by this seemingly intelligent, well-educated woman. One died after several months of NICU care; the second is developmentally delayed and handicapped. And now there is three.
I spent a year observing a major, tertiary-level NICU, so that I could tell the stories of children, families and staff living on the cutting edge of medicine – and medical ethics – in my book, Baby E.R. I entered this world not only as a journalist impressed with the rapid advances seen in the last decade in neonatology, but also as a parent whose daughter, for one very long week in 1992, occupied an NICU bed because of an infection (successfully treated).
Upon my return seven years later, I found the NICU to be a place of constant drama, wonder and hope – hope that is most often fulfilled. But I also saw, for all too many parents, a place of fear, anger and confusion. They often come to this whirlwind world of medical technology and technique, a tangle of wires and machines that seems to swallow their babies whole, utterly unprepared for what they will see and what they must decide. It is a curious thing that one out of ten children will be born prematurely and need some sort of neonatal care, yet few of their parents, beyond the ones most obviously at risk, ever discuss such matters in advance with one another or their physicians, much less grapple with the sorts of life and death decisions a NICU parent often must face. If I could fix anything, it would be that look of blank incomprehension so many young NICU parents wear on Day One, simply because they never thought it could happen to them. The medical community is not doing a very good job of preparing those one in ten expectant parents for their neonatal odyssey. Nor do most parents understand that many hospitals anxious to deliver their babies are ill equipped to treat those same newborns in the event of a critical medical problem.
It is fair to say that, often in the course of a single day in the NICU, I might see enough challenging ethical questions for a lifetime. It became clear that the answers, despite all our advances, remain elusive.
In the case of the triplets, born right on the cusp of viability, each of them a living question mark, what else could be done but to try everything possible? (The NICU at Long Beach does not generally attempt heroic measures before twenty-four weeks gestation.) Any one of these boys could have turned out like the three year-old who returned for a visit, healthy and whole. Indeed, after five months of care, one boy did go home with his mother, though his two brothers did not survive. She had been part of the treatment decisions every step of the way, including two DNRs and two decisions to withdraw all but comfort care from her sons. As agonizing as those decisions were for her, she knew, after many long discussions with her sons' nurses and doctors, that they were the right decisions. The decision to treat and attempt to save these triplets was sound, despite the poor outcomes for all three – including the one survivor who developed respiratory distress a month after discharge and suffered severe brain damage before he could be revived. If fault can be found anywhere in this case, it lies with overly aggressive fertility treatments that set the stage for a multiple premature delivery. The false economy of implanting more than two embryos to boost the chances of pregnancy produced these three tragic outcomes (and the $1.5 million in medical bills they generated). If ever a medical field needed reform, regulation and an ethical overhaul, it is fertility medicine.
The decision to treat profoundly damaged preemies and other newborns aggressively appeared thornier still in the case of the IVH and drug-damaged babies. It was clear neither mother would bear the moral or financial costs of their decisions before and after delivery. The mother of the child with the brain bleed had sought no prenatal care, though she already had a toddler at home and presumably should have understood the need to seek medical attention during pregnancy (which, in this case, could have staved off her premature delivery). She was a party girl, not ready to grow up, not capable of confronting the reality of her child's condition. The time during which a decision had to be made on how far to go in treating this child passed far too quickly for this single parent to grasp, and the treatment team felt obliged to err on the side of hope. The child survived, but he left the hospital with an uncertain future, in need of constant care from a mother seemingly incapable of providing it.
The girl whose brain and future were destroyed by a mother who produced serial drug babies poses the most difficult challenge for NICU treatment decisions -- as clear a case as imaginable of preserving a life few people would consider worth living. The breakdown here was a legal one, it seems. No rational system would leave that mother in a position to dictate the course of medical care for her child while eluding legal consequences for her own conduct. Eventually, of course, the child was made a ward of the state – but this came long after the girl's autonomic functions had stabilized and her survival was assured. New laws – or some way of making existing ones work quickly in emergent situations (an unlikely prospect at best) – would be required to change this dismal picture.
In this case, the neonatal team at this hospital did what it does whenever an extremely ill newborn approaches this fateful crossroad (and what every NICU ought to do): The team carefully explained to the parent the child's condition, prognosis and likely quality of life, and the likely costs and consequences of preserving that life through heroic measures. The results were not very good in this instance, but that seemed to be the exception, not the rule. In most cases I observed in the unit during the course of a year, in which extremely low-birth weight infants and other severely damaged infants were admitted and treated, the NICU staff took great pains to discuss these issues with parents and to make them full partners in the decision-making process. The staff did not sugar-coat the possibility that certain choices could commit parents to many years, if not a lifetime, of caring for an extremely ill child with limited quality of life and high personal and financial costs to the family. Naturally, the vast majority of parents choose to do everything possible even with that information in hand – but at least they do so in this particular NICU with full knowledge of what could lie ahead.
 An author and journalist, Edward Humes received the Pulitzer Prize for specialized reporting in 1989 for his newspaper writing on the military, including dispatches from Panama; the unjust execution of an Army private during World War II; and a year-long investigation of fatal military helicopter crashes linked to flawed night-vision devices.
Humes left daily journalism to write nonfiction books. His most recently pulibshed, BABY E.R. (Nov. 2000), is a real-life medical thriller set in a neonatal intensive care unit, a place of cutting-edge science, extraordinary healers, and impossibly small patients -- where lives are held, literally, in the palms of doctors' hands.
His previous book, MEAN JUSTICE: A Town's Terror, a Prosecutor's Power, a Betrayal of Innocence (Simon & Schuster 1999, Signet 2000) debuted to critical acclaim, was named a best book of 1999 by the Los Angeles Times, and was a finalist for the Edgar Allan Poe Award from the Mystery Writers of America. The bestseller spins a terrifying story of injustice and official misconduct in a California community and throughout the nation.
NO MATTER HOW LOUD I SHOUT: A Year in the Life of Juvenile Court (Simon & Schuster 1996, Touchstone 1997), was named best book of the year by the Investigative Reporters and Editors of America and received the 1997 PEN Center USA Award for research nonfiction. After the book appeared, Humes was asked to testify about juvenile justice before the U.S. Senate and both houses of the California Assembly, and has served as a University of California Regents Lecturer. The book is being developed as a television series.
Humes' other critically acclaimed books include BURIED SECRETS, MURDERER WITH A BADGE, and the bestseller MISSISSIPPI MUD, which chronicles the assassination of a Mississippi judge and his mayoral candidate wife -- and how their daughter's search for the killers exposed decades of crime and corruption by a shadowy group known as the Dixie Mafia. Evidence developed in researching the book was later used by prosecutors to win a conviction and eighteen-year prison sentence against the former mayor of Biloxi. Also a finalist for an Edgar award, MISSISSIPPI MUD is being developed as a motion picture by Martin Scorsese's Capa Productions.
A writer-at-large for Los Angeles Magazine, Humes has contributed to the Los Angeles Times Sunday Magazine, Glamour, Readers Digest, Buzz, California Lawyer and other magazines. Humes has previously worked for newspapers in Texas, Arkansas, Arizona and for the Orange County Register in Southern California. He is a graduate of Hampshire College in Amherst, Massachusetts, and lives in Southern California with his family. |
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