Helen Harrison dies at 68; advocate and author of ‘Premature Baby Book’

Helen Harrison was in her seventh month of pregnancy when she went into labor and gave birth to a baby boy, Edward. He weighed only 2 pounds, 13 ounces, had sepsis and, a week later, suffered a brain hemorrhage.

“Quite frankly,” the doctors told Harrison and her husband, “we don’t think he has enough brain left ever to breathe on his own.”

Terrified that her baby would die — “and even more terrified that he might somehow live,” she wrote later — Harrison was plunged into a world with few guideposts for bewildered and distraught parents. Although she had worked as a paramedic, she “couldn’t speak the language” of the hospital neonatal intensive care unit where Edward struggled against the odds.

Despite severe challenges, her son survived. In 1983, when he was 7, Harrison published “The Premature Baby Book: A Parent’s Guide to Coping and Caring in the First Years,” regarded for years as “the preemie bible” for families suddenly facing a welter of difficult decisions.

Harrison, who became a tenacious advocate for parents of premature infants, died July 4 at her Berkeley home after a long illness, said her husband, Alfred C. Harrison Jr. She was 68.

“Parents weren’t really given any say in whether to treat in extremely critical cases,” he said last week, recalling the approach many doctors took to the parents of premature babies four decades ago. “Doctors made the decisions and parents had to live with the results.

“Helen came into contact with dozens of families whose lives were ruined by the overuse of neonatal technology. She stepped forward and said it should be the parents who decide in extreme cases whether to treat or not to treat.”

In 1975, Harrison was barely 28 weeks into her first pregnancy when she developed a high fever and back pain. Her obstetrician said she had the flu and advised fluids and bed rest. A week later, she went into labor. Her illness was later diagnosed as listeriosis, a food-borne bacterial infection that can have serious consequences for pregnant women, newborns and people with weak immune systems.

Edward was born in a breech delivery Sept. 11, 1975, sending his parents on an emotional roller coaster. At one point, he was taken off his respirator and was expected to die.

Now 39, he has survived 20 major operations and has severe mental retardation, cerebral palsy, hydrocephalus and other significant impairments.

“We wanted our son to live,” Alfred Harrison said. “But we know what it’s like to take a terrified, pain-stricken, retarded child to an emergency operation in the middle of the night. Helen formulated the ambition to write the book we could have used when we went through the experience.”

The book covers a wide range of issues, including the challenges of bonding with an extremely sick newborn, explanations of common medical complications and coping with a baby’s death.

Calling it “the premier guide” for parents of premature infants, Allison Martin, in a review for the website prematurity.org, wrote that Harrison’s work “still stands out for its tone of sympathy for parents and for its frank discussion of parents’ emotional feelings through all stages of the process.”

Helen Herre was born Aug. 23, 1946, in Harrisburg, Pa. Her father died in a plane crash when she was 8. After her mother remarried, the family moved to Aikin, S.C., where her stepfather — an atomic engineer like her natural father — had been transferred.

After graduating from high school, Harrison entered Hollins College in Roanoke, Va. She later transferred to UC Berkeley, where she met her husband and earned a degree in Russian in 1968.

She spent seven years researching the medical problems premature babies face as well as issues related to feeding and emotional attachment. She also gathered the stories of dozens of parents.

The book’s 1983 publication brought a deluge of mail from other parents, many of whom were grateful for the care their babies received and others who felt doctors had misled them about the infants’ prospects for a normal life.

In 1991 Harrison sent some of the letters to Dr. Jerold Lucey, then editor of the journal Pediatrics. He took the parents’ concerns seriously and in 1993 published a paper by 10 parents of premature babies urging a more sober and realistic appraisal of the limits of neonatal medicine.

Lucey, who is now retired, recalled that Harrison often attended conferences he organized and criticized medical professionals for the way they interacted with parents. “She annoyed some people,” he said. “She was not afraid at all. She was very forceful.”

Besides her husband and her son, Harrison is survived by a daughter, Amy Ruth Harrison Sanchez; a brother, Edward Allen Herre; and a sister, Joan Herre Erwin.

elaine.woo@latimes.com

Twitter: @ewooLATimes