Speech During Grand Rounds at
Long Beach Memorial Medical Center

Delivered by Edward Humes, Author of BABY ER
Long Beach, California, Fall 2001.

The hospital provided the setting for Baby E.R. After publication, Edward Humes was invited to “conduct” Grand Rounds, a monthly gathering of the hospital’s physicians, staff and members of the public, so that he could discuss the book and his personal experiences during his yearlong “immersion” in the medical world.

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I’d like to express my gratitude for being invited to speak today during Grand Rounds. It’s an honor and, I have to say, a forum quite different from what I’m accustomed to. For the most part, I speak to audiences comprised of members of the general public, sometimes university students, who tend not to be well-versed in the subject I’ve written about, and who are eager to LEARN. At times, I’ve also spoken to groups of lawyers, who tend not to be well-versed in the subject I’ve written about, and who are eager to SUE.

Today, however, I find myself in the unique position of speaking to a gathering whose expertise in the medical disciplines I’ve written about in BABY E.R. is far greater than my own, given that I am neither doctor nor nurse nor particularly competent with a pair of tweezers. I think the solution is to offer some observations and lessons learned about a unique moment in my journalistic career and in the life of this medical center — the creation of a book about the daily life and toils of your Neonatal Intensive Care Unit and its staff and patients.

As you might imagine, some interesting and tough issues arise when the worlds of medicine and journalism collide: What happens when a hospital — a culture that lives and breathes confidentiality, right down to those omnipresent warning signs in the elevators — opens its inner sanctum to a journalist, whose role in life by definition is to tell all? How do you balance issues of access and privacy? What is to be gained by such a venture? (Or as Medical Director Mel Marks put it so succinctly when we began several months of negotiations back in 1998, “Why should we do this?”) Who has the final say about what goes on the printed page? How do you make sure the author-in-residence doesn’t accidentally defibrillate one of the attendings? And, finally, what were the results? How did patients react? What was the impact of this book? Was throwing open the doors to show the world what goes on in an intensive care unit worth it? Or was the cure worse than the disease?

THE IDEA

I should start, I suppose, with the genesis of BABY E.R. A few years earlier, I had written a book called No Matter How Loud I Shout: A Year in the Life of Juvenile Court. I already had developed an expertise in writing about crime and the justice system, but this was my first work completely devoted to immersion journalism, the sort of book in which the author literally immerses himself in the world in which his book is set. This is another way of saying that you hang around until they say ENOUGH and show you the door.

For the juvenile court book, I spent a year observing what happened in the courtrooms, detention facilities, probation offices and counseling centers reserved for our troubled youth in Los Angeles. I worked as a volunteer in juvenile hall and was granted access to normally confidential hearings and files. Immersion journalism allows a writer to gain not only invaluable expertise and knowledge of the institution he’s writing about, but more importantly, he becomes intimately familiar with the people who are that institution’s beneficiaries, targets, laborers and visionaries. The result for me was a book about people — teachers, cops, lawyers, parents, judges, young criminals, young victims — whose intertwined lives, compelling in themselves, revealed a larger story, of a sadly dilapidated, undermanned and outgunned juvenile court, the unwanted stepchild of our justice system, that, even so, remains the tattered embodiment of one of our finest impulses, the notion that our most precious resources are our children, and that we are obliged to treat them more wisely and mercifully than adult criminals.

Writing that book was an eye-opening, exhilarating experience, but an enduringly sad one, and when I was through, I wanted two things for a future foray into immersion journalism: I wanted an equally compelling world to explore, with its own language, culture and personality, that is not accessible to the general public and that grapples with issues and events both intensely personal and of great social importance. But — and this was the sticky part — I wanted it to be more uplifting, more hopeful, than the all-too-frequent futility I witnessed in juvenile court.

It also happened that, eight years, eleven months and eight days ago, my daughter Gaby was born here and came home, only to return a day later with an infection that required a week-long stay in the NICU. It was the most harrowing time of our lives — my wife and I were overwhelmed by the feeling that we were alone in the world and that no one understood, by the pain of having to hand our little girl back to the hospital, by the fears of what was to come. But after the initial shock wore off and it became clear our daughter would get well, we realized the brand of medicine practiced inside this NICU was like no other we had heard of — humane and human in ways we never expected, even amid the whirl of emergencies and crises that were continually spinning out around us. It seems I had known all along the world I wanted to immerse myself in as a writer — it just took a little distance and perspective, seven years worth, for me to realize it.

MAKING IT HAPPEN

Then came the tricky part: making it happen. First, of course, I did what all journalists do if they can: I exploited any personal entries I could muster. And they were good ones — our pediatrician, Dr. Phil Theriot, and our obstetrician, Dr. Bob Boucher, great physicians we’ve been so fortunate to have in our lives, provided invaluable advice and introductions. I met with the neonatologists and nursing staff and the administration, and explained my idea.

My pitch was simple: You have a great unit, you do great things, you confront dramatic, life-and-death situations daily, you make a difference in people’s lives daily, you face scientific problems and ethical issues of great societal import daily, you are an invaluable resource in your community, and your medical specialty arguably has come farther faster than any other, with a 90 percent mortality rate for certain types of premature infants becoming 90 percent SURVIVAL rate in the space of a decade. And yet, given all this, the general public has no idea what you do. One out of ten newborns in America are going to need the services of a neonatologist, and almost as many are going to be admitted to an NICU after birth, yet ninety percent of Americans couldn’t tell you what a neonatologist does. Most expectant parents couldn’t tell you what neonatal services are available at their maternity hospital should their newborn need them — or if any such services are available at all. Except for occasions when the media descends to cover some Guinness Record Book multiple birth, I suggested, you are the best-kept secret in the medical world.

This must have made sense to someone, I suppose, as the folks in the unit and the hospital administration eventually said yes.

But then, of course, it was time for the risk managers and lawyers to have their say. And their concerns were important ones — potential deal breakers, really. The first important hurdle was to deal with issues of confidentiality and privacy. For this project to work, for me to be truly immersed in the world of the NICU, I would have to be given carte blanche to wander about without a keeper, attend deliveries, surgeries and transports and generally just peer over everyone’s shoulders. I would need to understand everything about a patient’s condition, read their charts, and interview and get to know the families. None of this is allowed in the normal course of hospital business. It had never been done here before, and though journalists occasionally visit, none stay for six months to a year at a pop, as I was proposing.

Fortunately, my experience in the equally privacy-obsessed juvenile court served me well here. We came up with an elegantly simple approach. I would dress in scrubs to blend in, more or less, with notices posted in the unit and on every chart informing parents that an author/observer was in the NICU gathering information for a book, but that he would not write in any identifiable fashion about any child or family without specific, written permission. Then we developed release forms that I kept with me at all times, that informed parents of children in the unit who I was, what I was doing, and that, should they sign, gave me permission to use their names and stories in my book. I used a similar release for hospital staff. In this way, my general presence in the unit was no different than having a student or researcher visit — I was bound by the same rules of confidentiality governing the staff, unless and until I obtained signed releases. Problem 1 solved.

Then there was the issue of liability, the lawyers’ eternal bugaboo, which came down to the hospital not wanting to be liable in case I did something harmful, like pushing buttons I wasn’t supposed to touch, as well as the hospital not wanting to be liable in case it did something harmful, like dropping some large object on me. I readily agreed to these points. I’m being a bit facetious here, of course. There was the legitimate concern, which I first raised, that this was an intensive care environment with emergencies occurring regularly, and that it was important that I not get in the way, nor disrupt the smooth and safe operation of the unit. I worried a lot about this, but it turned out to be fairly easy to stay out from underfoot. Apparently the nurses learn to do this gently but firmly with medical students and they simply treated me as a particularly remedial one. It worked out nicely all around.

Finally, there was the issue of control — who would control the content of the book. I never fully realized how much physicians like to control their environment. Then I spent time in the NICU and, perhaps more aptly, I spent time with surgeons who work in the unit. Control is, perhaps, too weak a word, but it’ll have to do. Domination sounds a bit too harsh. In any case, the question came up, and it’s a natural one: How do we know you’re not really doing some sort of expose? How do we know you’re not going to say mean things about us? We want to read the unpublished manuscript and have the right to dictate changes.

Now, journalists are not big on controlling their environment. We are the flies on the wall, content to watch. But the one thing we insist on controlling is our prose. Set the rules and the limits under which I am able to observe in the unit, I can live with that, but my observations and judgments, and the way I fashion them into a story, are mine and mine alone. This is a matter of journalistic integrity, which, contrary to popular belief, is not an oxymoron. I have a reputation as an independent, fair and thorough journalist and author. That reputation vanishes as soon as the words printed in my name are revealed to be censored or not my own. Furthermore, from the hospital’s point of view, the value of a book by an independent voice that reflects well on the NICU would be great. The value of a book whose content was controlled by the hospital would be considerably less. There would always be the question: what was left out?

I am happy to report that a compromise was struck that worked well for everyone: We agreed in writing to an extensive fact-checking process that began with the first draft of the book and continued up until publication, in which I checked and double-checked scientific and medical information, as well as personal and biographical details about staff and patients, with the original sources for accuracy and completeness. Thus there was input from many voices in the hospital, and I used that input, but the final editorial decisions rested with me and my publisher. It was my stated intention to produce a positive-themed book, which is why I chose this unit — I knew from personal experience that there was a great and life-affirming story to tell. But I offered no guarantees beyond fairness and accuracy — we all knew I would see many successes in the NICU, but it was also understood that bad things happen in hospitals, despite best efforts to avert them, that inevitably I would witness some of them, and they would become part of the fabric of the book as well.

INTO ACTION

So we had our agreement, and I began my daily observation. It was one of the most fascinating experiences of my journalistic career, watching the men and women of the unit care for these impossibly small and fragile preemies, walking on the edge of what is possible. I witnessed everything from a transport of a anoxic newborn from a hospital with no capability to intubate an infant, to a 12-minute, full-bore delivery-room code, to brain, heart and abdominal surgeries, to the first moment a mother was able to hold her child — two months after he was born.

The openness and cooperation I received from the nurses, RTs, OTs, social workers, fellows, residents, attendings and most of all, the families, was extraordinary. I was amazed and gratified at the willingness of so many moms and dads to share their stories, their experiences, their traumas, joys and sadness with me. When I began, I expected many, if not most, to shy away from the intrusiveness. To my lasting gratitude and surprise, virtually every family I approached and asked to sign a release, did so. It turned out for some, having an extra person around willing to listen was more of a relief than an intrusion. The trust they placed in me left me feeling a very great responsibility to do their stories justice.

I think the doctors and nurses were sometimes unsure what to make of my choices of subject matter. I was, of course, interested in the dramatic and the unusual cases. But this was not a book about aberrations, it was about the daily miracle of this NICU, the day-in-and-day out process of making children and families whole, in ways that have become so routine that I think it took an outsider with fresh eyes to see it. I’d see Lupe Padilla examining a wizened 26-weeker, kicking and full of vinegar — the baby, I mean — with Dr. Padilla admonishing, “Behave, child,” the way she always talks to the babies. Or I’d watch the nurses deftly changing lines on some tiny preemie who hadn’t yet developed the instinct to breathe, and who a handful of years ago would never have left the delivery room. Or I’d watch occupational therapist Sara Masur coax a baby into nipple feeding, then show an anxious mom who was about to give up how to do it. And then they’d invariably turn to me and say, in all sincerity, “How in the heck can you write a book about us? We’re so boring.” I’d just shake my head. The drama was all around me, one of the most richly textured and exiting places I’ve ever written about.

I ended up using as a central theme the story of a young couple whose son, Elias, born at 28 weeks gestation, had a three month stay in the NICU. I was there to see Elias’s dad race in from the delivery room on the day of his birth, to see his mom wheeled in on a gurney for her first look at her son; I was there when she finally held him after many weeks on the respirator, and when their hopes of going home early were dashed by one setback after another.

Later, Art Strauss asked me why I picked that particular baby, since Elias was not one of the sickest or most dramatic or smallest babies. But that was the point. His parents were every parent: they never expected to be in the NICU, they had every reason to believe they would have a healthy, normal, full-term infant — right up to the moment when Amelia’s water broke. Elias’ was a typical NICU experience, a life begun in trauma, an unexplained premature birth, one of the 30 percent that has no known cause, with underdeveloped lungs and a malrotation of his intestines that led to some scary moments, but no real fear that he would be lost. He had some feeding problems and his insurer tried to hustle him out the door with a tube implanted in his stomach for nourishment, but that was headed off at the pass. He’s a strapping, healthy boy now. A success story.

John and Jackie Kennedy, some of you may know, had a son shortly before the president’s assassination. The birth came at 34 weeks, I believe, a month-and-a-half further along than Elias. Patrick Bouvier Kennedy died of hyaline membrane disease. There was no respirator for him, as Elias had. No surfactant therapy. And no chance. Elias’s story, as typical as it may be, IS a miracle, and it was a privilege to tell it, and to use the remarkable history of the care of premature babies to illustrate why his experience is so worthy of note.

IMPACT

I am happy to report that Baby E.R. Has been well received — not only by its subjects, but by reviewers, and readers worldwide. I get emails and letters regularly from across the states, Europe and Australia, from people, some in medical fields, but mostly from ordinary folks who have had children in the NICU, and who found value, comfort or solace in reading about others who have shared their experiences.

The book is being published in Taiwan and Japan, and Readers Digest has excerpted it here and in thirty-eight other countries in English, Spanish, French, German and a few other languages. There has been newspaper and television coverage, and several very lovely TV specials featuring the doctors, nurses and staff of the NICU.

Perhaps the impact I most remember came shortly after the book was published, when we had a small celebration marking the occasion. Those who helped make the book possible were invited. I wasn’t sure what to expect, to tell you the truth. Reactions of people I’ve written about have been unpredictable in the past. I’ve learned, for instance, never to use the word portly.

Midway through the evening, in walked the parents of a little girl I spent a great deal of time with. The child, Nikkol, after eight long months in the hospital, succumbed to her many ailments stemming from a severe gastroscisis. I had watched their tragedy unfold, the roller coaster of emotions they endured as hopes ebbed and returned and were finally extinguished. I attended Nikkol’s funeral, in the company of the girl’s neonatal nurses, and listened to her dad read a poem about the little girl who never came home. And here they were, a year later, at my book signing, with a new baby in the mother’s arm, and a huge smile on her face. She walked up and hugged me and thanked me for the book. She called it a fitting memorial to their daughter, and she said reading it had helped them move on. I guess it was then that I realized I had done all right.

Thank you all.

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