Beginning Life in the Neonatal ICU

A decade ago, Adam Wolfberg and his wife, Kelly, experienced the premature birth of their daughter, Larissa, who was delivered 10 weeks early and weighed less than two pounds. “We entered the neonatal intensive care unit to find [our daughter] completely surrounded by men and women in long white coats,” Wolfberg writes. “The neurologists had arrived. Their attire was formal, and their manner was somber. They were in the process of examining Larissa.”

Wolfberg, 41, an assistant professor of maternal-fetal medicine at Tufts School of Medicine, tells the harrowing tale in his new book, Fragile Beginnings: Discoveries and Triumphs in the Newborn ICU (Beacon Press, 2012). Following a brief career in journalism, Wolfberg graduated from Johns Hopkins School of Medicine in 2001. By sheer coincidence, he was an intern in obstetrics at Brigham and Women’s Hospital when his daughter was delivered there. Tufts Now met with Wolfberg recently in his Boston office to learn more about his personal ordeal and its aftermath.

Tufts Now: Why did you write this book?

Adam Wolfberg: I wrote Fragile Beginnings because I thought that parents like my wife and me, who had this surprising experience of being parents to a premature newborn, didn’t really have a story out there in print that they could relate to. There are a few “how-to” books, a few books for parents of “preemies” that sort of explain the process, the day-to-day workings of an NICU [neonatal intensive care unit] and the day-to-day workings of taking care of a premature newborn. But there really isn’t a nonfiction narrative of this experience. I wanted to create that.

To what degree did your medical training complicate the experience of your daughter’s birth?

A little knowledge can be a scary thing. I knew enough to know the significant risks that Larissa would face, being born at 26 weeks, but at the same time, there wasn’t anything I could do about it. And I certainly didn’t understand the nuance of caring for these little babies.

Did what you knew make things harder in any way?

I think the only way it makes it harder is that when you don’t have a medical background, you are predisposed to taking at face value whatever the physicians caring for your child have to say. And of course that can be reassuring. Now everyone goes to Google, and that sense of security may have been pierced. But in 2001, when Larissa was born, Google didn’t have the presence in medicine that it does now. And I think having a single source of information that’s trustworthy is sometimes easier.

Part of your job as a physician at Tufts Medical Center consists of advising and counseling parents about what they will encounter in their child’s birth. That must be stressful.

It is. But that’s really the age-old dilemma of the physician: How do you express empathy and be tremendously present for your patient while not living that experience every day and maintaining that separation that you need? In the years right after Larissa’s birth, it certainly was more challenging for me to be counseling parents who looked so much like Kelly and me, but as time passes it gets easier. I hope that I bring an extra degree of empathy because I can genuinely share the experience of fearing the complications of a pregnancy.

Do you volunteer your own experience in this context?

I’ll tell you why I don’t. I do not explain to pregnant patients who are at risk of delivering at 26 weeks or 25 weeks that I have a preterm baby. The reason I don’t is that Kelly and I are enormously lucky. Larissa is a healthy, happy kid with a mild motor impairment who has challenges in her day-to-day life, but if she walked in here, you would not know that she was born prematurely or that she has cerebral palsy. I don’t want to bias parents by saying, ‘Your kid is going to be fine, because look at my kid.’

After the baby’s born, I do tell them. Then I say, “You know, I share that experience with you, and I have a child who was born at 26 weeks and is doing really well.” If they are definitely in that boat and are going to be raising a child who was born prematurely, I want them to be as optimistic as possible—not unrealistic, but optimistic.

In the book you discuss quality-of-life issues and how prospective parents often struggle with these. How do you think about quality of life differently now, after Larissa’s birth?

You know, I was surprised by what I learned in reporting this book—surprised by how people reframe their own experience and reframe their family’s experience to be optimistic. They see their life in a generally positive way. I share that feeling. I see Larissa’s life in enormously positive terms. I minimize her daily struggles to tie her shoes as easily as her friends tie theirs. She doesn’t run as easily as her friends run. But in the grand scheme of things, I’m confident that if you ask Larissa what her quality of life is like, she would say it’s equivalent to that of her friends.

To find that my experience mirrors the literature would have surprised me before Larissa was born. I think that this knowledge has significantly informed my practice, because it’s very reassuring to know that no matter what you see, no matter what the injury is, most families will emerge with a very positive view of their own life. That’s what really matters.

Your book covers the revolution in prenatal care that has occurred over the past 50 years. What are a few of the highlights?

Probably two major discoveries that stand out are the discovery of a compound called surfactant, which allows the smallest air sacs of the lungs to stay open and not collapse—which they do naturally due to surface tension unless this compound is present. Premature babies’ lungs do not produce surfactant to the same extent that full-term babies’ lungs do.

To be able to provide that for babies made an enormous impact on the ability of very small babies to oxygenate themselves. Previously, these babies would have died because there would have been no way to provide them with oxygen.

A second major factor was the development of parenteral nutrition—that is, nutrition that could be fed into a vein. In these cases, a catheter is fed through a peripheral vein into a central vein, and then concentrated nutrition is dripped into the bloodstream directly, bypassing the intestines. Before the current technique, premature babies needed to eat, but they didn’t know how to eat. Their intestines weren’t necessarily developed to the point where they could provide themselves with enough nutrition, and so they starved.

How have survival rates for preemies changed?

The change has been enormous. I write a little about the acceleration in the field of newborn medicine that occurred after President John Kennedy’s son Patrick was born and died at 34 weeks in 1963. During that period, survival was unheard of before 32 weeks or so. It just didn’t happen for the reasons we’ve discussed. Since then, survival at 32 weeks is almost universal—about 95 percent. Right now, survival at 23 or 24 weeks is about 50 percent.

When babies are born prematurely, what complications do you see?

Globally speaking, the complications result from the fact that organs are not fully developed. One consequence is that the baby’s skin is not [an effective] barrier to the external environment. Fluid loss through the skin is a tremendous problem because it’s just so thin. The lungs don’t have those very small air sacs, and the air sacs that do exist don’t produce surfactant. The brain is enormously fragile, and the blood vessels running through the brain are easily ruptured. The intestines tend not to work normally. Retinas may bleed easily, so you have the risk of blindness.

There are some organ systems that do seem to be functional at a very early gestational age. For example, there don’t seem to be any reproductive consequences to being born prematurely. Premature babies grow up to have babies just like anybody else. But a lot of the organ systems that are critical for survival are just not developed fully until the end of nine months’ gestation.

As more premature babies survive, do complications tend to rise?

Yes and no. Yes, there are more babies surviving at very early gestational ages who develop complications that are lifelong; but no in the sense that a lot of babies who used to survive at later gestational ages with complications no longer have them.

What can be done to repair the damage in premature babies?

To me, the most exciting area for therapy is in the realm of neurology. I write a lot about [neuroscientist] Jason Carmel’s very exciting work on convincing the brain to operate parts of the body that it wasn’t really designed to operate. I think that work holds enormous potential to change the way that brain-injured premature babies and brain-injured term babies are able to live out a more functional life.

Talk more about that.

The brain is designed so that specific regions of the brain control specific parts of the anatomy. It’s contralateral, so the right brain controls the left side of the body, and the left brain controls the right side. When part of the brain is injured—that is, when the neurons that move signals efficiently from brain to body are injured—the part of the body controlled by these neurons no longer functions properly.

The question that Dr. Carmel is asking is: Can we get the brain to rewire itself? Can we get the right side of the brain to operate the right-hand side of the body? Because very early in development, there are some connections that go from the right brain to the right body. They just get neglected as part of development. He’s trying to recruit these connections to overcome the neglect, to be reused. He’s also trying to train cells by stimulating them to accomplish tasks that they weren’t designed to accomplish.

Have you seen some success with this approach in your daughter’s case?

It’s hard to say. I can speculate that Larissa has gained some same-side control. I say that because when she goes to use her [injured] right hand exclusively, her left hand always mirrors the motion, suggesting that the same part of the brain controlling the left has been recruited to control the right side, too. But I don’t have any proof that that’s the case.

Bruce Morgan can be reached at bruce.morgan@tufts.edu.