Roanoke Times
Copyright (c) 1995, Landmark Communications, Inc.
DATE: SATURDAY, April 24, 1993 TAG: 9304240401
SECTION: SPECTATOR PAGE: S-1 EDITION: METRO
SOURCE: PATRICIA BRENNAN THE WASHINGTON POST
DATELINE: LENGTH: Long
Emily Butterfield, who lived only 53 days, was the daughter of New York Times reporter Butterfield and his wife, Elizabeth Mehren, a reporter for the Los Angeles Times. Mehren was on a flight between Los Angeles and New York when her placenta ruptured, expelling protective amniotic fluid. Emily was born a few hours later, at 25 weeks gestation, on March 26, 1988.
She was 1 pound 12 ounces and 13 inches long. "Your running shoes, your Filofaxes, weigh more than that," said Mehren.
Some infants can survive at 25 weeks; most cannot, or survive with serious problems. Emily seemed to be doing well, but as it turned out, she too had a serious - ultimately fatal - problem.
"It's very painful to watch that movie," Mehren said. "When we walked out of that neonatal unit, part of my heart stayed there. I most often feel that I have a little angel on my shoulder. I did make a deathbed promise to this baby that the strength and dignity that she displayed would not be forgotten. She's not a movie of the week. There are enormous lessons for people."
Some lessons involve the medical personnel in the hospital's neonatal intensive-care unit. A NICU is "a planet we didn't even know existed," said Mehren. "It's a whole kind of parallel universe. There was no kind of handbook and protocol for us." Mehren developed fond feelings for the nurses, less so for the physicians.
"Inadvertently, I walked into this medical underground," she said, "and I have found myself very much talking out about it. In some ways, it keeps Emily alive. I talk about the lessons my daughter taught me, what I learned from this very small person, her birth, her life and her death. I learned a lot.
"One of the lessons is that if you have a question, you ask the experts: the nurses. Nurses take psychology; doctors take none, at least nothing on a pediatric level. A lot of her doctors were brilliant technicians and lacking in social skills."
Emily Butterfield appeared to be doing well, passing the critical 27-day time period and gaining weight with the aid of a feeding tube. At two pounds, surgeons could operate and find out what was causing the pus that drained from a tube in her distended abdomen. When they did, they found that Emily was suffering massive necrosis of her intestines. She would not live.
Mehren, clinging to hope, had been keeping a detailed daily journal, planning to give it to Emily one day.
"I had this extremely copious journal that was hard to read because it had these great teardrops on it," she said.
The journal became the source for her book, "Born Too Soon," published in 1991, condensed in Reader's Digest, and the basis for this film starring Pamela Reed and Michael Moriarty.
"I simply felt that there was a story to be told," said Mehren. "What happened in that unit was magnified because the critical illness of a small child is an extreme case."
Mehren said she did not intend to be "a doctor-basher. But I did feel that there were dynamics there that could have been improved. In the beginning, they saw us as an interesting addition [to the NICU], and then we became troublemakers. I asked too many questions and I was there too much. The neonatologist couldn't handle the fact that we were not in the winner's circle, that we were not going to be a success story."
"For Elizabeth, the nurses were the heroes," he said. "They were much more able to work with the parents. They were much more humane than the doctors, male or female. Once the operation was performed and it became clear that Emily had no intestine, the doctor washed his hands of us. That's pretty hard to forget. I think the movie downplays some of the antagonism."
Except for some minor changes, Mehren said the movie is accurate. "It was my mortal fear that they were going to sanitize it. I think it would have been very easy to change the ending." Emily died May 17, 1988, and was buried near her paternal grandparents at the Butterfields' oceanside house, built in 1690. The house is near one in which Edgar Allen Poe lived.
"At the little service we had for her, they read a poem by Poe, `Annabel Lee,' " said Butterfield. "It's a very moving poem, and it was easy to change the words from "Annabel Lee' to "Emily.' " Emily's stepsister, Sarah Butterfield, played "You Are My Sunshine" on her violin, the song from Emily's crib mobile.
Sarah and Ethan, children of Butterfield's first marriage, are now teen-agers, but Emily was Mehren's first child. And because Butterfield had watched his parents die in hospitals and had witnessed death when he was a reporter in Vietnam, "I was more prepared for what might happen. The doctors warned us that you have to watch out, don't let yourself be so emotionally attached. You have to take it day by day, minute by minute."
On April 6, 1990, Mehren gave birth to a son. Both she and his father believe that "Sam is ultimately Emily's gift to us."
by CNB