Fragile Beginnings

by Adam Wolfberg, MD

  But the adaptation had occurred. Eight hundred NICUs had banded together, had realized they needed to share data and learn from one another and that only through cooperation would elegance come to the constant methodical improvement of care for their tiny patients.

  Within the walls of Brigham and Women’s, Ringer was also working on ways to make the care more elegant. It is well known that breast milk is better for babies than formula. There are all sorts of benefits, from fewer infections to fewer allergies, and it has even been shown—although some experts dispute this fact—that breast-fed babies are smarter.

  Breast milk is even more important for premature newborns. Breast-fed premature babies get fewer infections and are less likely to have cardiovascular complications. But the most significant advantage is that breast-fed babies are much less likely to get necrotizing enterocolitis—a devastating complication of prematurity in which the intestines don’t receive sufficient oxygen and die. Necrotizing enterocolitis, known as NEC, can sometimes be treated by simply giving the intestines a rest, but it often requires surgery to remove the dead piece of intestine and reconnect the remaining gut. For reasons that aren’t entirely understood, breast milk prevents NEC.

  For years, the Brigham and Women’s NICU, like most NICUs, has had a system to feed babies their mothers’ milk. Women were encouraged to pump breast milk at home and freeze it, and the NICU then defrosted the carefully labeled units of milk and dripped them into the babies’ stomachs or put it in bottles when the babies were big enough to suck and swallow.

  But what to do for babies who didn’t, for whatever reason, have access to a steady supply of their mothers’ breast milk?

  Wet nurses—lactating women hired to provide breast milk to other babies—have an important role in history going back millennia. But their popularity declined markedly in the early twentieth century with the recognition that some diseases could be transmitted via breast milk and with the development of reasonably safe infant formulas. Human milk banks—along the lines of blood banks—developed in Europe and the United States in the early 1900s to provide for babies, particularly premature babies, when their mothers’ milk was unavailable. With the advent of infant formula, milk banks moved toward the fringe of child-rearing, as medical professionals advocated formula over breast milk. The AIDS crisis in the 1980s, and the discovery that the virus could be transmitted in breast milk, caused most milk banks to close.

  But as evidence mounted that breast milk was beneficial, milk banks learned from their colleagues in the blood-bank industry and developed highly accurate systems to detect disease in their banked milk and to pasteurize their product.

  When one mother in the Brigham and Women’s NICU asked her nurse if she could arrange for her baby to receive donor breast milk, the NICU administrators put their heads together quickly and then said yes.

  Lactation consultant Tina Steele thought the Brigham and Women’s could do even better. She pulled Ringer aside and suggested the NICU provide banked breast milk to all the unit’s babies whose mothers wanted it.

  “What?” Ringer said. “How would that work? And who would pay for it?”

  “I’m not sure,” Steele responded. “But I know it would be good for the babies.”

  “Why don’t you put together a proposal,” Ringer said. “And make sure it’s evidence-based.”

  A couple of months later, Steele was back with a proposal for how to use donor breast milk in the NICU, a review of the literature, and information on the cost involved.

  She presented her ideas to the leadership team Ringer had assembled. No longer was this a group made up entirely of doctors; the new mantra was collaboration, and that meant that leadership involved all of the clinical disciplines, Ringer’s team of physicians as well as nurses, respiratory therapists, and the other clinicians that cared for the NICU babies. The group was impressed—the strength of the medical evidence was overwhelming.

  They had to find funding—banked milk costs nearly five dollars per ounce—but they identified some philanthropic support and hoped that their study would demonstrate a cost savings elsewhere in the babies’ care.

  The day before the program was set to begin, a woman with HIV infection delivered a twenty-five-week newborn. The baby was the perfect candidate for the program since she couldn’t safely receive breast milk from her mom, so Steele opened the program early.

  It was far from a wonder drug like surfactant, which changed newborn medicine overnight, but it was backed by medical evidence and had broad support in his unit, so Ringer thought it might fit into his concept of elegant care.

  In 2006, after eighteen years alone at the helm, Ringer hired a younger physician to run the NICU on a day-to-day basis—younger, but not just out of fellowship. This physician spoke about developing cohesion and teamwork. Ringer listened to this and heard his own voice from years earlier. He was stepping back to work on the big picture, although it was often unclear just what that big picture looked like.

  Of late, Ringer had seemed distracted and short-tempered. For a guy who was hired in part for his unflappability and his ability to instill calm, it was disturbing to find himself snapping at nurses and even losing his cool and yelling at colleagues. Around him, he heard that people were wondering what he would do next.

  During a recent summer, Ringer and his longtime mentor Bill Speck had gone fishing again off the coast of Cape Cod. Speck had retired after a long career as a successful hospital administrator that culminated in a stint as chief of the massive Columbia Presbyterian Medical Center in New York. Ringer, who had once envisioned himself rising to become a hospital president, had an opportunity to reflect on his own career’s trajectory and his recognition that, like newborn medicine, his professional passion had evolved and was satisfied by solving discrete problems in the NICU; he didn’t need to tackle the broad administrative challenges facing a high-level hospital administrator. Floating with Speck on the Vineyard Sound, nearly thirty years after they first fished those waters together, Ringer looked back over his career with a degree of satisfaction.

  The Brigham and Women’s NICU was now a place where babies uniformly received the best medicine had to offer. A large staff from different clinical disciplines worked together to constantly improve the care they provided to the babies, meeting regularly to evaluate their work, objectively and critically, but with a newfound level of professionalism. Vermont Oxford provided them with a context, and the esprit de corps that Ringer had built year by year drove the subtle advances that were truly elegant. Ringer had ushered in the use of surfactant and a host of big discoveries over his years in charge, as well as the administrative changes that were often more difficult. Recently there’d been talk about a whole new unit that would be larger and provide more space for families to kangaroo and engage in the care of their babies, and Ringer was looking forward to watching the next generation of advances.

  When Larissa’s older sister Grace was five, she wanted to learn to ride a bike. We went to a field near our house, I held the bike while she positioned her feet on the pedals, and then I gave her a push.

  “Pedal,” I yelled. And she did, eventually hitting a bump and falling over into the soft grass. We did the same thing again and again until she no longer fell.

  A couple of hours later, with one of Grace’s knees bloodied and a huge smile on her face, we went home and she proudly told her mom she knew how to ride a bike.

  Back from Birmingham, Larissa and I went to a stretch of gently sloping tarmac behind a local elementary school to complete the bike-riding lessons she had begun with Reggi.

  First, I removed the pedals, and she practiced coasting across the pavement. I ran alongside to catch her when she lost her balance.

  It was slow going, but she gained confidence in her balance, learning to adjust for the inherent asymmetry in the function of her right and left sides. “Aim for the
fence,” I said, and at first we made it only a few dozen feet. Frustrated, we took a break, sitting in the air-conditioned car to recover from the sweltering heat reflected off the parking lot.

  I’d been inspired by Kelly’s gentle perseverance and the methodical way she had taught Larissa to gain developmental skills, and we kept coasting along the pavement until Larissa could, in fact, glide the length of the parking lot and I had to stop her from running into the fence.

  The next day we tried something else: this time the pedals stayed on, and the bike was balanced on a special bicycle treadmill so Larissa could learn to keep her feet on the pedals as she powered the wheel around and around. We counted fifty revolutions, then took a break, and then did it again, and again.

  On the third day, we moved back to the field and once more picked an area that was gently sloping so we could recruit gravity to our side. Like Grace years earlier, Larissa readied herself atop the bike, I gave her a push, and she managed to pedal a few feet before weaving and falling into my arms. We did this at least twenty times, never making it more than a handful of bike lengths before her right foot came off the pedal or she hit a bump in the grass and tipped over. Frustrated and sweating, we cooled down in the car.

  Once more, we set up at the end of the field, and Larissa got ready to pedal. I gave her a push, yelling, “Pedal, pedal,” and she pedaled as hard as she could. This time her feet stayed on and she reached a critical speed; running to keep up, I watched her pedal across the field.

  We went back to the house, sweating and dusty, and told Kelly about Larissa’s cycling achievement, but Larissa’s enthusiasm about the accomplishment was tempered. She was proud of herself, but she seemed to recognize how hard it had been to gain this skill that had come so easily to her sisters.

  Nine years after that terrifying morning when Larissa was born, Kelly and I share a glance, as we sometimes do when we watch Larissa accomplish one or another improbable task. We each have a slightly different expression, but it is reserved for times like these. First, there is gratitude that our child is riding a bike; at one point, neither of us knew if she’d ever even walk. Next, there is sadness that so many times every day Larissa is reminded of the activities—trivial and significant—that are harder for her than they are for her friends. Last, we share awe at the spirit and determination that have helped Larissa more than all the miracles of therapy and neuroplasticity combined.

  Acknowledgments

  In addition to Kelly, to whom this book is dedicated, I am perpetually inspired by Larissa for her tenacity, strength, and humor, and by her two remarkable sisters, Hannah and Grace.

  I am grateful for the sustaining support of family members and friends, including Susan Lynch, who served as Kelly’s right-hand mom during Larissa’s early years; Kelly’s sister, Karen; my parents, Steve and Judy; and my brother, Elias.

  I am grateful to Steve Ringer and Jason Carmel for sharing with me their science, their practice of medicine, and their vision for improved pediatric care.

  Many friends, colleagues, mentors, and even caregivers of Larissa gave generously of their time and advice, and some reviewed sections of the book. They include Elisa Abdulhayoglu; Craig Conway; Sabrina Craigo; Jon Davis; Stephanie DeLuca; Adre du Plessis; Michael Epstein; Lorraine Figelsky; Sarah, Kim, and David Habib; Gabi Harrison; Joe Kaempf; Reggi Lutenbacher; Jack Martin; Amanda Rodriguez; Saroj Saigal; Jane Stewart; Ed Taub; Linda Van Marter; and Joe Volpe.

  Last, I am tremendously appreciative of Helene Atwan, my editor at Beacon Press; Julie Silver at Harvard Health Publications; my literary agent, Linda Konner; and my longtime friend and mentor Evan Thomas, who suggested this book was possible.

  Notes

  Chapter 3: Gifted Hands

  1. T. Raju, “From Infant Hatcheries to Intensive Care: Some Highlights of the Century of Neonatal Medicine,” in Fanaroff and Martin’s Neonatal-Perinatal Medicine, 8th ed., eds. R. Martin and A. Fanaroff (Philadelphia: Mosby Elsevier, 2006), 3–18.[back]

  2. Ibid.[back]

  3. Tetsuro Fujiwara et al., “Artificial Surfactant Therapy in Hyaline-Membrane Disease,” Lancet 315 (1980): 55–59.[back]

  4. L. O. Lubchenco, D. T. Searls, and J. V. Brazie, “Neonatal Mortality Rate: Relationship to Birth Weight and Gestational Age,” Journal of Pediatrics 81 (1972): 814–22.[back]

  Chapter 4: “The Degree of Impairment Is Difficult to Predict”

  1. F. Guzzetta et al., “Periventricular Intraparenchymal Echodensities in the Premature Newborn: Critical Determinant of Neurologic Outcome,” Pediatrics 78 (1986): 995–1006.[back]

  2. C. Limperopoulos et al., “Does Cerebellar Injury in Premature Infants Contribute to the High Prevalence of Long-Term Cognitive, Learning, and Behavioral Disability in Survivors?,” Pediatrics 120 (2007): 584–93.[back]

  Chapter 6: Whose Choice?

  1. S. N. Wall and J. C. Partridge, “Death in the Intensive Care Nursery: Physician Practice of Withdrawing and Withholding Life Support,” Pediatrics 99 (1997): 64–70.[back]

  2. Leon Eisenberg, “The Human Nature of Human Nature,” Science 176 (1972): 123–28.[back]

  3. R. S. Duff and A. G. Campbell, “Moral and Ethical Dilemmas in the Special-Care Nursery,” New England Journal of Medicine 289 (1973): 890–94.[back]

  4. C. A. Conway, “Baby Doe and Beyond: Examining the Practical and Philosophical Influences Impacting Medical Decision-Making on Behalf of Marginally-Viable Newborns,” Georgia State University Law Review 25 (2009): 1097–1175.[back]

  5. George Annas, “Extremely Preterm Birth and Parental Authority to Refuse Treatment—The Case of Sidney Miller,” New England Journal of Medicine 351 (2004): 2118–23.[back]

  6. In the Matter of Baby K, 16 F.3d F. Supp. 590 (E.D. VA 1993). WL 38674 (4th Cir. 1994).[back]

  7. H. MacDonald et al., “Perinatal Care at the Threshold of Viability,” Pediatrics 110 (2002): 1024–27.[back]

  8. J. W. Kaempf et al., “Medical Staff Guidelines for Periviability Pregnancy Counseling and Medical Treatment of Extremely Premature Infants,” Pediatrics 117 (2006): 22–29.[back]

  9. J. W. Kaempf et al., “Counseling Pregnant Women Who May Deliver Extremely Premature Infants: Medical Care Guidelines, Family Choices, and Neonatal Outcomes,” Pediatrics 123 (2009): 1509–15.[back]

  Chapter 7: Is Your Life Good?

  1. World Health Organization, “Constitution of the World Health Organization,” http://www.who.int/governance/eb/who_constitution_en.pdf. [back]

  2. S. Saigal et al., “Parental Perspectives of the Health Status and Health-Related Quality of Life of Teen-Aged Children Who Were Extremely Low Birth Weight and Term Controls,” Pediatrics 105 (2000): 569–74.[back]

  3. S. Saigal et al., “Stability of Maternal Preferences for Pediatric Health States in the Perinatal Period and 1 Year Later,” Archives of Pediatrics and Adolescent Medicine 157 (2003): 261–69.[back]

  4. S. Saigal et al., “Differences in Preferences for Neonatal Outcomes Among Health Care Professionals, Parents, and Adolescents,” Journal of the American Medical Association 281 (1999): 1991–97.[back]

  5. P. Brickman, D. Coates, and R. Janoff-Bulman, “Lottery Winners and Accident Victims: Is Happiness Relative?,” Journal of Personality and Social Psychology 36 (1978): 917–27.[back]

  Chapter 9: Making It Routine

  1. N. Charpak et al., “Kangaroo Mother Versus Traditional Care for Newborn Infants
  2. N. Charpak et al., “Kangaroo Mother Care: 25 Years After,” Acta Paediatrica 94 (2005): 514–22.[back]

  Chapter 11: The Plasticity Treadmill

  1. J. B. Carmel et al., “Chronic Electrical Stimulation of the Intact Corticospinal System after Unilateral Injury Restores Skilled Locomotor Control and Promotes Spinal Axon Outgrowth,” Journal of Neur
oscience 30 (2010): 10918–26.[back]

  Index

  Please note that page numbers are not accurate for the e-book edition.

  Abdulhayoglu, Elisa. See Elisa, Dr.

  ABO incompatibility, 27

  abortion, 76–78, 86

  acetylcholine, 60

  action potential of neurons, 60

  adoption, 89, 98

  AIDS/HIV, 158, 159

  ALS (amyotrophic lateral sclerosis), 91–93

  Alzheimer’s, 104

  American Academy of Pediatrics, 80, 83, 84

  amyotrophic lateral sclerosis (ALS), 91–93

  anemia, 26–28

  anencephaly, 82

  anesthesiologist, 17

  animal experiments: on cerebral palsy, 152; on corticospinal tract neurons, 105–9, 141–48, 152, 153; on neuroplasticity, 61, 132–34, 146–48; on spinal cord injury, 67–68, 105, 107–8, 141–48, 152

  ankle-foot orthosis (AFO), 129, 130

  Annas, George, 82, 85

  antibiotics for premature infants, 18, 26, 47, 48, 73. See also infections

  Ativan, 17

  autism, 57, 103

  Avery, Mary Ellen “Mel,” 42–43

  axons of neurons, 60, 105–6, 142, 146

  babies. See premature infants

  Baby Doe rules, 78–82, 84

  Baby Einstein, 124

  Baby K case, 82–83

  Baby Sign Language University, 125

  Bach-y-Rita, Paul, 61–62, 70

  Bach-y-Rita, Pedro, 61–62

  bathing of premature infants, 119

  bilirubin, 119

  Birmingham, AL, 130–32, 134–36, 149–50

  bleeding in premature infants, 27–28