Helen Harrison, Authority on the Trials of Premature Births, Dies at 68


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Helen Harrison wrote “The Premature Baby Book” after her son was born. He arrived more than two months early and weighed 2 pounds 11 ounces.

Helen Harrison, who was so unprepared when her son was born prematurely that she later wrote a popular manual for parents in similar situations and became their advocate, died on Saturday at her home in Berkeley, Calif. She was 68.

She had been struggling with an immune system ailment for five years, said her husband, Alfred.

Ms. Harrison had worked as a paramedic and was inundated with reference books for a normal birth during her pregnancy, but “when things went wrong,” she said, “I found no books to help me.” Even the jargon of the intensive care nursery in which her premature son, Edward, was being treated mystified her.

“Your baby’s birth, which should have been a joyful event, has become an ordeal of anguish and uncertainty,” she advised parents seven years later in “The Premature Baby Book: A Parents’ Guide to Coping and Caring in the First Years,” which she wrote with Ann Kositsky, a nurse who worked with Edward.

The book was published in 1983 by St. Martin’s Press, and has gone through a dozen printings. Its proceeds were donated to neonatal causes.

Parents worry about the cause of a premature birth and about whom to blame, Ms. Harrison wrote, “but above all, your thoughts are of your child: ‘Will my baby live?’ ‘Will my baby be normal?’ ”

She urged that parents be better informed, and that their wishes, even to end a pregnancy, take precedence over those of the hospital, which might wish to conduct perhaps well-intentioned but “undeclared experimentation” with premature babies, and which will have financial incentives in offering extensive neonatal care.

Edward Harrison weighed 2 pounds 11 ounces when he was born two and a half months prematurely in 1975. A spinal fluid infection called listeriosis left him severely retarded and with cerebral palsy, hydrocephaly and impaired vision.

“The day after his birth,” his father said in a telephone interview on Wednesday, “the neonatologist told me: ‘Don’t even hope. He has seven major conditions, any one of which would be of serious concern.’

“We tearfully agreed with the doctors when they told us that living forever on a respirator was not a true human life, and that Ed could not survive without a respirator,” Mr. Harrison said.

The respirator was turned off, but he survived. Now 39, he has undergone about 20 major operations.

“This seems like a recipe for ruined lives all around,” Mr. Harrison said. “But despite his handicaps, Ed has turned into a delightful human being, who plays music for himself all day, sings, dances, and reads Dr. Seuss books out loud with heavy intonations. He has been a major joy to Helen and me.”

Helen Herre (pronounced “hurry”) was born in Harrisburg, Pa., on Aug. 23, 1946. Her father, Edward, a chemical engineer, was killed in a plane crash when she was 8. Her mother, the former Rebecca Allen, remarried, to Donald Webster, another chemical engineer and an atomic scientist who worked on the Manhattan Project during World War II.

She grew up in Harrisburg and in South Carolina, attended Hollins College (now Hollins University) in Roanoke, Va., and graduated from the University of California, Berkeley, where she met her husband, an art dealer and writer. In addition to her husband and her son, she is survived by a daughter, Amy Ruth Harrison Sanchez; a brother, Edward Allen Herre; and a sister, Joan Herre Erwin.

Since Ms. Harrison’s book was published, doctors have made enormous strides in caring for premature babies and predicting their futures. Still, notwithstanding the Harrisons’ nurturing of their son as he grew into adulthood, she crusaded against what she described as “indiscriminate medical intervention” in pregnancies and “the indifference of practitioners” to the pain of newborns undergoing lifesaving therapy.

“Helen became friendly with dozens of families who had been raising survivors of neonatal intensive care, and saw over and over again how many lives had been ruined — including, most of all, the growing child’s — by the torturing into a compromised life of what had essentially been a miscarriage,” Mr. Harrison said.

“We had enough money to allow us to put tons of time and energy into Edward’s care,” he added. “The situation would have been entirely different if Helen had been waiting on tables all day, or if I had been riding a jackhammer. It would have been a nonstop nightmare instead of the challenge that we were able to deal with.”

Complaining in 2000 that parents are rarely told about long-term, so-called minor disabilities, she said, “These minor disabilities, of course, can keep children from living independently, or ever having a social life or being able to function in society.”

When Congress was considering legislation in 1984 requiring the treatment of disabled newborns regardless of the parents’ wishes, Ms. Harrison wrote in a letter to The New York Times, “Nowhere is there any mention of the lifelong misery that medical treatment can inflict upon a child born lethally impaired.

“Both personally and professionally, I have had occasion to witness the suffering of seriously disabled infants salvaged by modern technology. Many of these children remain forever dependent on painful medical procedures. They may spend years, sometimes their entire lives, hospitalized, tethered to life-support machinery or subjected to repeated surgery. Many eventually succumb to complications of their ‘lifesaving’ therapies.”

The legislation passed, but was struck down by the United States Supreme Court.

“When parents are given information and options during pregnancy, away from the context of medical crisis and intervention,” Ms. Harrison wrote in 2008 in the journal Seminars in Fetal & Neonatal Medicine, “a large majority choose testing for fetal problems; if the tests indicate fetal abnormality, parents overwhelmingly choose to terminate the pregnancies.”

Doctors, she continued, “should ask themselves if they would accept for their own prematurely born infants the care they impose on other people’s children.”

“They must ask themselves,” she added, “how they can best inform parents and return these profoundly life-altering decisions to families on their own turf.”



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