Friday, April 20, 2018
Human Interest

About this story

All of my recollections in this story have been verified with the people involved, with photos and video taken at the time, and with medical records. I also relied on my own journal entries and notes taken by my husband, Thomas French, a journalist and author.

To supplement my understanding of extreme prematurity, I interviewed doctors, bioethicists and epidemiologists, talked to other parents of micropreemies, and read dozens of journal articles and books. Dr. John Lantos, director of the Children's Mercy Bioethics Center in Kansas City, helped shape many of the ideas in this series. His book, Neonatal bioethics: The Moral Challenges of Medical Innovation, was an invaluable resource.

Scenes for which I was not present, such as Gwen Newton's resuscitation of our baby, were described to me by the people who were there and verified by medical records.

The statistic in the top of Part One of the story, about the number of babies born at the edge of viability, comes from the National Center for Health Statistics' U.S. birth certificate data from 2006, supplied by Harvard epidemiologist Tyler J. VanderWeele. The statistics cited by Dr. Aaron Germain are from the Eunice Kennedy Shriver National Institute of Child Health and Human Development Neonatal Research Network.

The claim that prematurity is the leading killer of newborns comes from the March of Dimes. Complications from prematurity, which include low birth weight, respiratory distress syndrome and bacterial sepsis, are several of the top 10 causes of death in the first year of life. Together, they are responsible for more deaths than the No. 1 cause, birth defects.

The following journal articles were essential to Part One of this story, particularly the discussion of the gray zone of viability, how doctors decide when to intervene, and outcomes for extremely preterm infants:

• Singh et al. "Resuscitation in the gray zone of viability: determining physician preferences and predicting infant outcomes." Pediatrics, 2007.

• Seri and Evans. "Limits of viability: definition of the gray zone." Journal of Perinatology, 2008.

• Stoll, et al. "Neonatal outcomes of extremely preterm infants from the NICHD Neonatal Research Network," Pediatrics, 2010.

• Tyson et al for the National Institute of Child Health and Human Development Neonatal Research Network. "Intensive Care for Extreme Prematurity — Moving beyond Gestational Age," New England Journal of Medicine, 2008.

All of the scientific and medical passages in this story were fact-checked by neonatologists.

In Part Two of the series, the term "zero zone" comes from a parent quoted in a study conducted by Dr. Roberto Sosa, a neonatologist at All Children's Hospital and founder of its neonatal intensive care unit. Dr. Sosa's research was instrumental in the design of the NICU, with its emphasis on the parent-child bond and on developmental care. He was important in helping me understand the ethics and challenges of extreme prematurity.

Information about the population of babies in the NICU in April 2011 was provided by the NICU director, Cindy Driscoll.

The detail about the amount of blood in the body of a 20-ounce baby was calculated by nurse practitioner Diane Loisel.

The detail about the world's smallest surviving baby comes from Guinness World Records. Rumaisa Rahman was born at Loyola University Medical Center in Illinois in 2004, weighing 9.2 ounces. According to an article in the journal Pediatrics, she survived without chronic health problems.

A discussion of international physician attitudes about resuscitation at the border of viability can be found in de Leeuw, et al. "Treatment choices for extremely premature infants, an international perspective," The Journal of Pediatrics, Nov. 2000.

The prayers from the book in the hospital chapel were compiled from a number of different dates, as I stopped in to read it frequently and continue to do so whenever I am in the hospital.

The other prayers I described were related to me in conversations and e-mails, and verified before publication.

Dr. Fauzia Shakeel described the scene of her praying.

The statistics in the infographic online and in the sidebar to the print version of the story on the incidence of major morbidity in preemies come from the following sources:

• RDS, PDA and sepsis: Stoll, et al., referenced above. The numbers cited are from babies born between 2003 and 2007.

• ROP, IVH and NEC: Hobart et al. Mortality and Neonatal Mobidity Among Infants 501-1500 grams from 2000 to 2009. Pediatrics, 2012. The numbers cited are from 2009.

Times researcher Natalie Watson contributed to this report. Times photographer Cherie Diez was at the hospital on the day our baby was born as a friend of the family. Many of the photos you see are from those early days. Only much later did she and I return to the hospital as journalists.

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