My patient, six months pregnant, came to see me for an ultrasound. I diagnosed her with shortening of her cervix, which put her at significant risk of preterm delivery. Three months before her due date, with her fetus' chance of survival outside her womb dismal, this was reason for concern.
I laid out the risks, I prescribed progesterone and I recommended bed rest. "Do you mean I have to stay in bed all day?" this active mother of a two-year-old asked incredulously?
I explained bed rest: reclining on a couch or in bed except for trips to the bathroom and a brief daily shower.
"Can I lift my son?"
"It's not recommended," I said, wincing as I gave her more bad news.
"Can I prepare a meal?"
"It would be better if your husband did it," I explained.
"What about my job?" she asked with eyes wide. She managed a garden store and spent a lot of time walking and lifting.
"Can you take a leave of absence?"
And then my patient left -- her life turned upside down -- with a little appointment card clutched in her hand reminding her to come back in two weeks so that I could measure her cervix again.
My patient left with the facts, a prescription and instructions for bed rest that we hoped might prolong her pregnancy. What she didn't receive was advice about how to handle the fear and anxiety associated with the news that any day she could deliver a premature newborn who might have difficulty breathing, neurologic impairment or blindness. And she didn't get tips on how to handle the loneliness, isolation and guilt that accompany the transition from active employee, parent and spouse to long-term couch potato.
Up to 18 percent of women are placed on some type of activity restriction during their pregnancy. Usually it's a short-term inconvenience, but for some women, the recommendation to go on bed rest can come early in a pregnancy and turn a joyful experience into a months-long nightmare. And while physicians like me are quick with medical advice, almost none of us prepare our patients for the emotional turmoil that a full-stop entails. To make matters worse, even as we advise inactivity, we aren't even convinced that bed rest works to prolong pregnancy.
Melody Eisenlau of Carrollton, GA, went for a routine ultrasound 17 weeks into her pregnancy, was diagnosed with a short cervix and was sent home on bed rest. That morning, she had been a obstetric nurse, a graduate student studying to be a nurse practitioner and the mother of a five-year-old. The next day she was on unpaid leave from her job and was on her way to dropping out of school. Over the subsequent weeks, she watched her relationship with her daughter fray, as the five- year-old came to rely on Melody's husband and couldn't understand why her mom wasn't making her breakfast, tucking her in at night and giving her a bath.
"I felt useless, because normally I'm the caretaker," Melody said.
She also felt guilty, even though she knew rationally that it made no sense to blame herself for her short cervix. "I felt incompetent as a mother -- I couldn't even carry my child." What if her child ended up in the newborn intensive care unit, she wondered.
For the inquisitive patient, bed rest can be even more difficult to tolerate because there isn't a lot of evidence that it prolongs pregnancy. The few studies that have randomized women to bed rest found that the intervention didn't extend their pregnancies.
Obstetricians know this and yet they continue to recommend the practice for patients who are at increased risk of preterm delivery. (I know it may not help, and yet I routinely recommend it).
In a survey of 814 obstetricians by a group of Cornell obstetricians, 71 percent recommended bed rest for their patients at risk of preterm delivery, even though 72 percent of those surveyed thought that bed rest provided minimal or no benefit.
The reason may be that bed rest seems like a logical intervention: activity may cause the uterus to contract, and by shifting the body into a supine position, gravity is no longer pushing the baby down against the cervix like it is when the woman is standing erect.
Women buy into this logic. "If I had delivered prematurely, and I had not done everything possible, I would have regretted it," said Eisenlau, who as an obstetric nurse was well aware that bed rest may be ineffective.
Doctors agree with this principle: there is so little they can recommend that anything is better than nothing. (Although there is a cogent argument to be made that bed rest is worse than nothing because it increases the risk of blood clots and has an enormous economic and emotional cost.)
Experts (and I'm talking about social workers here, and not physicians) recommend that women on bed rest try to "normalize" their feelings, to use the words of Ashley Ferguson, a clinical social worker at Tufts Medical Center in Boston (where I work), so that women acknowledge their anxiety and feelings of isolation and don't add it to the list of pathologic events in their disrupted lives. She also counsels staying connected to friends, partners and children, and using the telephone and internet to facilitate those connections -- particularly when women are hospitalized on bed rest.
Angela Davids, who spent time on bed rest with two pregnancies and now runs an online support group for women on bed rest advises women to reach out to others like them, either through a hospital-based support group or online. "Women release anxiety by talking to other women," Davids says, "And if you are stuck in the hospital or stuck on your side at home, you totally miss out on that."
Kat Okwera of Atlanta, who had been on bed rest for 12 weeks when I reached her at home recommends that women on prolonged bed rest make a daily schedule with objectives to accomplish each day -- even if these objectives include working from home, reading, playing video games, participating in online chats or watching movies -- so that there is a sense of attainment and structure that can ward-off the tendency to lapse into despondency. But she acknowledges that, "it's frustrating waiting for life to happen to you because you really have no control over any of it."
Setting up a support system for the patients I put on bed rest is not something my colleagues and I learned how to do in medical school. Fortunately, great social workers like Ferguson and the amazing nurses who nurture our hospitalized patients take up some slack. For our patients at home, Davids' website, and others like it including i-am-pregnant.com, pregnancy.org and whattoexpect.com, offer a great way to interact with other women in the same boat.