Blond, blue-eyed and spirited Kylie Johnston, age 3, eager for her mother to get up, scrambled off her parents' bed clutching a pair of scissors. Her mother, Sue Johnston, seven months pregnant and on doctor-ordered therapeutic bed rest, now had a decision to make. If she lay still as ordered, Kylie could have an accident with the scissors. If she got up to rescue Kylie, she would risk the life of her unborn child.
Fortunately, her husband came home unexpectedly and retrieved the scissors.
Johnston had to spend 10 weeks of that 1982 pregnancy on bed rest, a regimen ordered for certain women thought to be at risk of miscarriage. Some are allowed out of bed only a few times a day. Others are restricted to a bedpan.
In the metropolitan area, an estimated 500 pregnant women are confined to bed at any one time. For many women, the news that they must go on bed rest is emotionally devastating. They become depressed and anxious. Plans of an ideal pregnancy are shattered with fears of premature birth and uncertainty about how to pass the hours and days and weeks in bed. They worry that anything they do, any move they make, could imperil the pregnancy.
So in 1983, Johnston, a psychotherapist in private practice in Arlington, launched The Confinement Line, a volunteer telephone network of veteran bed resters to help women and their families deal with the stress bed rest creates. In 1985, Johnston co-authored with Deborah Kraut the book, "Pregnancy Bedrest: A Guidebook for the Pregnant Woman and Her Family."
"Patients handle surgery better than the announcement of bed rest," said Dr. Luis E. Sanz, an obstetrician/gynecologist at Georgetown University. "It cripples women. They become handicapped and can't perform their jobs. In this area, 53 to 60 percent of women are working."
Between 250,000 and 350,000 premature births occur in the United States every year. These tiny infants are subject to many more birth defects than are full-term infants. Doctors believe many premature births could be prevented with better prenatal care and, in some cases, bed rest.
Jennifer Sandberg had to take 17 weeks off from her job at the Office of Personnel Management because of a problem with pregnancy. During a routine checkup at 20 weeks, her doctor "slapped the table and said, 'You've just quit work!' " The doctor had discovered damage to the cervix, raising the possibility of a premature birth. It was "an emotional shock," said Sandberg.
She immediately called her husband, Clint McCully, a Department of Commerce economist, to tell him she was beginning bed rest. McCully was upset. "I had thought, we're pregnant and nine months later we would have a baby," he recalls. "I was angry, but I didn't know at who or what. I thought about finances and Jenny, too."
In preparing herself for the possibility of giving birth prematurely, Sandberg studied all the medical aspects of preemies. "Clint couldn't even look at pictures of premature babies. He wanted a summary. I felt abandoned. He kept me at arm's distance," Sandberg recalled.
Sandberg gave birth by cesarean section to Linnea McCully 1 1/2 years ago. "Once a healthy baby was born, the problems of the pregnancy didn't matter," McCully said.
Not so with Sandberg: "I'm still recovering. There were so many concerns with carrying the child." She doesn't know when she can put behind her the chronic, unrelieved stress and life-or-death questions she experienced during her high-risk pregnancy.
Her reaction is not unusual, according to doctors familiar with the stresses associated with bed rest.
Bed rest patients often have feelings of inadequacy because of limitations on what they can do. Sometimes they feel a loss of alertness and stimulation, since many are forced to leave careers temporarily. Others have ambivalent feelings about the pregnancy (If I had known this was going to happen, I wouldn't have gotten pregnant) and think about terminating the pregnancy. But denial may be the most common reaction.
"Career-oriented women sometimes say, 'My pregnancy is normal, yet you nurses and doctors are trying to treat this as a disease. I'm going to continue my job and look at this pregnancy as a normal event, not a disease,' " said Carol Barr, nurse administrator at Tokos Perinatal Nursing Services, which monitors uterine activity to check for signs of premature labor.
If women know some basic rules about bed rest, however, the time can be less depressing and even productive, many doctors say.
First, they must learn the correct position in which to lie. Certain areas are subject to chafing: the elbows, hips, buttocks, knees and ankles. Barr described the preferred positions:
all the way over on the left side, lying flat or with the head elevated;
on the right side with the abdomen resting on the bed; and
sitting up at a 45-degree angle with the head elevated and the hips and abdomen tilted to the left. Those positions place the least pressure on the cervix.
Women on bed rest do not need to eat as much as active pregnant women but still need 2,200 to 2,400 calories a day, according to Georgetown University Hospital senior clinical dietitian Adrienne Donaldson. High-fiber diets and a lot of fluids are recommended to avoid constipation.
But aside from physical comfort, experts say, women should take steps to protect their psychological well-being. Bed resters should put themselves on a schedule, beginning with an early awakening, a balanced breakfast, a change of clothes, grooming, a shower (with the doctor's permission), balanced lunch and dinner and two snacks, a nap and going to sleep at a reasonable hour.
It is important to change into day clothes. "They get depressed if they don't," said obstetrician Sanz. "I emphasize it's important to plan days. Put your bills together, arrange your medical bills. Right now is an opportunity . . . Ask friends to bring in meals and do the cleanup. Women are preoccupied with their pregnancy. I try to keep them busy so they won't think about it."
Lying in bed is a good opportunity to catch up on reading books or writing letters. And it's important to keep necessary objects within reach. Besides the obvious -- telephone, snacks and beverages, radio or television, books and magazines, medicines, calendar, lap desk for writing -- special items that can come in handy include: manicure, make-up and hair care products, cleansing wipes, important phone numbers, a wheeled tea cart (for mail) or utility basket (for laundry to sort), needlepoint or sewing kits, foam or fleecy pads to help prevent bedsores, intercom or walkie-talkie.
Still, even with the best preparation, the weeks in bed are no picnic.
During the early weeks of Margaret Hilton's pregnancy, she thought, "I had a little friend I was carrying around. Then I had a premature labor crisis, and I didn't want this out-of-control thing. I was afraid to do anything, even touch my abdomen, because it might cause contractions or labor. Before the crisis, I liked it when the baby moved."
Hilton, 33, research economist for Communications Workers of America, had six weeks of bed rest. "It takes a lot out of you to be helpless and out of control and to not pull your weight in your marriage," she said.
But on Oct. 18, three weeks early, Hilton presented her husband Stephen Godwin, a senior program officer with the National Research Council, with a 7 1/2-pound daughter, Miriam Elizabeth. "Bed rest," she said, "was worth all the trouble."
Carolyn Hughes Crowley is a free-lance writer in Washington. Resources
The Confinement Line. P.O. Box 1609, Springfield, Va., 22151. (703) 941-7183.