Monday, June 18, 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 7,000 pages of 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, Dr. Beth Walford's surgery on our baby, and Dr. Shakeel's prayers — were described to me by the people who were there and verified when possible by medical records.

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

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 this series, 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.

• Lantos and Meadow. "Variation in treatment of infants born at the borderline of viability." Pediatrics, 2009.

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.

The statistics in the infographics online and in 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 Morbidity Among Infants 501-1500 grams from 2000 to 2009." Pediatrics, 2012. The numbers cited are from 2009.

In Part Three of the series, "Baby's Breath," the quote from Dr. Shakeel during our conversation at Juniper's bedside was recorded in a cell phone video taken by my husband.

The amount Blue Cross Blue Shield paid All Children's Hospital for Juniper's care — $1.2 million, or about $6,000 per day — was provided by the hospital.

The figures cited by Dr. Norman J. Waitzman come from "Preterm Birth: Causes, Consequences and Prevention," a study he did with the Institute of Medicine of the National Academies in 2006. Dollars have not been adjusted for inflation or for the rise in health care costs. The average medical costs of babies born at less than 28 weeks gestation include babies who die shortly after birth.

Further discussion of the cost effectiveness of neonatal intensive care can be found in Dr. John Lantos' book cited above, and in Lantos and Meadow," Costs and end-of-life care in the NICU: lessons for the MICU?" The Journal of Law, Medicine & Ethics, 2011.

Lantos drew the comparison between Down babies and micropreemies in a phone interview.

I verified the conclusions and numbers in the financial section of the story with Waitzman and Lantos, and with Nancy Templin, chief financial officer at All Children's Hospital.

It was Lantos who helped me understand that although Juniper had an 80 percent chance of death or moderate disability at birth, her odds of being reasonably okay if she survived were about half. He also pointed me to research on the impact of families in long-term outcomes of premature infants.

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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