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I sat at the top of the wide staircase in the middle of a large, noisy lobby filled with children of various ages and their parents. On each knee I held a squirming four-year-old boy; identical twin brothers born just six months into their mother’s pregnancy, at birth the boys had weighed a little over one pound each. Below me on the staircase sat at least another dozen sets of twins, three sets of triplets, one set of quadruplets, and one trio that was missing a quadruplet sibling who hadn’t made it. They were all graduates of the hospital’s Neonatal Intensive Care Unit, or NICU. Some had stayed for just a few days, many for weeks, and some for months. The occasion was the hospital’s annual NICU Grad Party, an opportunity for parents to show off their offspring and to reconnect with the hospital staff who had cared for them during their children’s dark early days. It was also a chance for the hospital staff to rejoice in the results of their considerable efforts and to find out how their tiny patients did once they left the hospital.
As we posed for the annual “multiples” picture, I hugged Bobby and Sammy a little tighter. They were so warm, so alive, but I was pretty sure they wouldn’t have been in my lap that day if they’d been born just one year earlier than they had. They’d been among the first babies at the hospital to receive liquid surfactant into their lungs, a new treatment for a premature lung disease that accounted for most of the deaths in the NICU, including that of Patrick Bouvier Kennedy, President John F. Kennedy’s premature baby boy, in 1963. We were all astonished when Bobby and Sammy, born at just 24 weeks’ gestation and white males to boot (who usually had the worst lung disease), were on ventilators for only one week and didn’t have the usual laundry list of preemie complications. Without severe lung disease to contend with, they could handle the immaturity of their other organs more easily.
After the multiples picture was taken, I stepped up to the microphone at a podium that had been positioned at the base of the stairs. As medical director of the NICU, it was time for me to give my annual welcome speech. I unfolded the piece of paper that Linda, the NICU social worker, had handed me that morning. She had jotted down a few remarkable names and numbers from the RSVP list for me to read to the waiting crowd — including the tiniest baby (birth weight 1 pound 2 ounces), the longest NICU stay (17 months), the biggest baby (birth weight 12 pounds 6 ounces), and the oldest baby present. That was an 18-year-old high school student who reluctantly came up to the podium and shook my hand as I announced to the cheering crowd that this now 230-pound linebacker for his school football team was once a two-pound preemie in our NICU.
When I’d finished my speech, I left the podium and plunged into the noisy throng, recognizing the parents of several babies I had cared for over the years.
“Dr. Gleason!” they’d exclaim. “Over here! Look at Jamie now. Can you believe she was once so small, and so sick?”
We’d hug and I’d admire their little whirling dervish, or their sulking adolescent, and perhaps pose for another picture or two. I’ve kept all those pictures, some of which matched pictures I’d saved of the same baby in the NICU or of me holding the baby on home-going day. Parents usually expressed, each in his or her own way, their heartfelt gratitude for the care that their children, and they themselves, had received. They often shared with me their considerable relief that the experience was over and they could get on with their lives and the raising of their children. I drank it all in, savoring these conversations and the sight of all these happy, healthy kids who at one time had been so tiny and so sick, lying in incubators in the NICU, hooked up to all sorts of intensive care equipment and with no certainty that they were going to survive.
This book is a collection of stories about children — babies, mostly — whom I have known and cared for during my career as a neonatologist, a doctor who specializes in the care of newborn infants. Most of the stories take place in the NICU, a strange and wonderful place where both miracles and tragedies happen every day. I’d like to invite you to take a deep breath and step into that place with me. If you’re like most people, you’ve never been inside one except perhaps to visit a friend’s or relative’s premature baby. You probably think that it must be a terribly difficult place to work and at times it is, especially when a baby dies. But the NICU is really a very hopeful place, a fact that is evident at those NICU grad parties. Most of the babies who begin their lives there survive, go home with their parents, and do well.
These are the stories that have moved me the most and simply needed to be told. The events I’ve described are true, although in most cases I have changed real names, settings, and other identifiers to protect privacy. Some of the stories are unbearably sad. I cried when they happened, I cried as I wrote them, and I cry every time I reread them. Others tell of babies who survived and did well, against seemingly impossible odds. And a few of the stories are downright embarrassing, especially those that chronicle my tentative early years as a doctor-in-training.
My hope is that together with me, you, the reader of these stories, will celebrate the miracles of modern medicine, mourn its failings, and marvel at the strength of the human spirit, so evident in these children and their families, and in the dedicated people who staff the NICU.
Excerpt from "Almost Home: Stories of Hope and the Human Spirit in the Neonatal ICU" by Christine Gleason (Kaplan Publishing, 2009). All rights reserved.
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