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Never Let Go, Part 1: Lost and found

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 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 statistics pertinent to my baby account for the advantages of being female and not a twin, and for the fact that I received antenatal corticosteroids to strengthen her lungs. The statistics are specific to infants treated with mechanical ventilation. Odds for all babies born at 23 weeks would be bleaker. Survival data reflects babies who survived to age 18 to 22 months.

The claim that prematurity is the leading killer of newborns comes from the March of Dimes. Complications from prematurity, which include low birth weight and respiratory distress syndrome, 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. Prematurity is also the leading cause of developmental delays.

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.

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.

About this story 12/06/12 [Last modified: Friday, December 7, 2012 7:39am]
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