It sounds vaguely Victorian, doesn’t it? Confined to one's bed, suffering from an incurable physical ailment of days long gone.
Bed rest is the catch-all term we still use to describe the order given to pregnant women, by physicians or midwives, who are in some danger of a preterm birth and so must spend their pregnancy off their feet.
"I think of it as house arrest," Mary Murry, CNM, RN with the Mayo Clinic tells RH Reality Check. "You don't have to be in bed all of the time but you can't be going out and about either."
If this sounds like a woefully incomplete medical description, it is. There is no universally agreed-upon “definition” of bed rest even while 1 in 5 women in the United States will be placed on bed rest at some point, and for various lengths of time, during pregnancy. Some women are prescribed bed rest for only a few days while others spend significant periods of time supine, at home, or in a hospital, literally confined to home for weeks or months. For most working families, especially those in the lowest income levels, living paycheck to paycheck, taking even a day away from work seems impossible – but a week, a month, several months? Why is it, then, that the U.S. offers the most threadbare of safety nets for pregnant and new mothers who, by medical necessity, must frequently refrain from working to care for themselves and, after childbirth, a baby who may be in need of extensive medical care? In the richest country in the world, it’s shocking how limited our support is for pregnant and new mothers and their families. For mothers who have been on bed rest and become leaders in the fight to secure more and better resources, this is not only a health care issue it’s a women’s rights issue.
“From the perspective that nearly 1 in 4 women will be limited by bed rest, I see it as a women’s rights issue that women of all ages should stand behind. Pregnancy is a normal human function. Procreation shouldn’t have such a high risk of job loss, career suicide or financial ruin for a woman,” says Angel Davids founder of the international organization Keepemcookin.com. The organization provides support and education to women on bed rest.
The reality is, says Darline Turner-Lee, advocate and mother of two young children:
“This happens to women from every walk of life and every culture. It happens to older moms and younger moms, both. Some women sail through and other women who are vegan and exercise have a preterm birth. This is why we have to galvanize all women and get them to see that it’s a women’s rights issue.”
Turner Lee was put on bed rest with both of her children and started an organization, Mamas on Bedrest & Beyond, that provides services, support, resources and information to high-risk pregnant women and new mothers.
Bed rest may be prescribed for a variety of reasons and depending upon what those reasons are, a pregnant woman may be able to plan for the time or be immediately swept off her feet, almost literally, into bed to spend weeks or even months. The chance that something might go wrong during pregnancy isn’t something people want to talk about though, let alone plan for.
“A lot of women are caught unexpected [by a complication during pregnancy and prescription for bed rest]. Nobody talks about it, so when it happens you’re smacked upside the head. You’re not prepared,” Turner-Lee says. “Many women can’t plan for it. If you can, maybe you can save up vacation time so you have some paid leave. But many don’t, or can’t, plan for bed rest.”
Babs Haller Garrett is Resource Director for Hand to Hold, a Texas-based not-for-profit organization providing ongoing support, resources and education to parents of premature babies. She reveals a stark yet unifying reality:
“Anyone can have complications. Anyone can be prescribed bed rest. And anyone can lose their job because of a complicated pregnancy.”
The Mayo Clinic’s Mary Murry, a Certified Nurse Midwife and RN, tells me that the most common reasons for bed rest are premature labor, premature rupture of membranes and elevated blood pressure.
And for each woman, symptoms may be more or less threatening, requiring more or less rest.
That doesn’t mean, however, that bed rest isn’t a shared experience.
Most women ordered on bed rest become at the least, reticent partners in discomfort, frustration, sadness and sometimes physical pain over the days, weeks or months they are confined as they attempt to bring their pregnancy to full-term and birth a healthy baby.
“Most women think they would love nothing more than being told they have to stay in bed all of the time. That lasts about 24 hours and then boredom sets in and we find it isn't much fun. Most women stand it because it is the best thing for the baby,” says Murry.
To be clear, however, Murry tells me that bed rest isn’t without its risks: “It doesn't take long in bed for muscle wasting to occur. It also puts the woman at a greater risk for developing a blood clot.”
“Bed rest with my son was one of the loneliest times of my life. And I felt so useless, not being able to fully care for my 2-year-old daughter during that time,” Davids says.
Holly Blume was placed on bed rest for more than five months when pregnant with her son, Austen. “It was the most challenging experience in my life. I was on medication that had uncomfortable side effects. My body literally ached from head to toe - even my ears hurt from lying on my side so much. Anytime I rolled over I contracted, therefore, there was constant anxiety.”
Unfortunately, a pregnant woman’s worry over the health of her growing baby, how to care for other children at home and her own health is often overshadowed by anxiety over finances.
“At 22 weeks I was informed I needed to be on bed rest. I remember that day – I was at work. I came in after having been to the doctor and my immediate first thought was, ‘Oh my god, what am I going to do about money?’ I was worried about the baby but after that my first thought was about money,” Aviva (who asked that only her first name be used) told RH Reality Check, on her first day back at work after having her baby.
How do pregnant women ordered on bed rest pay their bills if they can no longer work? For low-wage workers, living paycheck to paycheck, is bed rest even possible? Does family leave cover bed rest? If a woman has saved up vacation or sick days but uses them up during her period of bed rest, does she have any way to take leave post-birth and still have the guarantee of a comparable job to which to return afterwards? Are there other coverage options available?
The federal Family and Medical Leave Act (FMLA), passed in 1993, allows pregnant women and parenting women (and men) time away from work and a guarantee of a comparable job to which to return. And eleven states – including Washington, California and New York have their own versions of the FMLA. California even offers paid leave. In addition, pregnant women who suffer from diagnosed complications may be eligible for short-term disability insurance. Health care reform has brought improvements to programs for some pregnant women offering the potential to reduce the number of women who need to be on bed rest in the first place. According to Pew Center for the States, a $1.5 billion federal grant program for evidence-based state home visitation for pregnant women and new mothers will be established through the Affordable Care Act. Insurance companies will no longer be able to deny coverage to pregnant women seeking preventive care, based on classifying pregnancy as a “pre-existing condition,” and Medicare will cover low-income adults, expanding access to coverage for women immediately prior and after pregnancy.
However, these initiatives are not enough.
The truth is that for lower income women in low-wage jobs, there are essentially no options. For some, it makes more sense to simply quit a job that offers no reason to stay. The Program on Gender, Work & Family, notes that while “some low-income workers may qualify for unpaid leave under the Family and Medical Leave Act, most cannot afford to take it. Without workplace flexibility or paid leave, low-income workers are forced to choose between caring for their families and their economic security.” That’s not really a choice, is it?
The United States is one of only four developed countries that do not offer paid leave to all new mothers. FMLA is available to employees of businesses with more than fifty employees, with other restrictions in place as well. Because it simply provides for unpaid leave, it leaves 51 percent of new mothers (and pregnant women) without any assured way to support themselves and their families; while 49 percent of women “cobble together paid leave…using sick days, vacation days, disability leave and maternity leave.”
Short-term disability insurance is helpful – if your employer or state offers it or you think to purchase it on your own. However short-term disability usually covers only six weeks of leave – and at approximately 60 percent of your salary. And because there is no uniform “bed rest” diagnosis, some insurance companies decide that the a doctor’s “prescription” for bed rest isn’t enough to qualify a woman for coverage.
“I’d like to see doctors put the prescription of bed rest in writing, with specific guidelines. I think this would help employers and insurance companies acknowledge that bed rest is a treatment, just like a medication or a surgical procedure. It is a method of keeping pressure off of the cervix, of keeping blood pressure down, of increasing blood flow to the baby, and of encouraging healthy growth. Bed rest is a medical treatment, not a vacation.”
That said, the American College of Obstetricians and Gynecologists (ACOG), in a pamphlet on high blood pressure in pregnancy, only says, “bed rest at home or in the hospital may help reduce the pressure…and may be prescribed.” It is not a cure and some studies have suggested that bed rest does not do much to stem preterm labor. However, given that physicians and other care providers do frequently prescribe bed rest – in some form and for some length of time – it’s critical that we acknowledge its role in a family’s financial world.
Aviva worked for a small business. Short-term disability insurance was not available to her. Plus, since the business had fewer than fifty employees, says Aviva, “right off the bat, I couldn’t get family leave.” She continues, “My plan, with my husband, was that I was going to work until the week before the due date so I could be out of work for three months after the baby was born. But immediately that went out the window.”
A prescription of unexpected bed rest meant a frightening financial reality.
“My doctor told me I needed to be on bed rest at 22 weeks. At thirty weeks my water broke so I needed to go to the hospital, where I stayed until my baby was born at 32 weeks. That time spent not at work – I couldn’t get any official help. I had three weeks of accrued vacation time and a week of sick leave. I had to get loans from my family.”
Aviva says she doesn’t know what she would have done if she didn’t have family near by to help her.
Babs Garrett Haller says she and her husband have been “financially ruined” by their experience.
When Babs became pregnant in 2007 she and her husband Joe were thrilled. But a month after finding out she was pregnant with twins Jack and Kate, devastation rained down. When she was 22 weeks pregnant, Jack died in-utero and Babs wound up on bed rest, in the hospital. Kate was born just weeks later, at 25 weeks, and months in the NICU (neo-natal intensive care unit) followed.
“Being on bed rest, unexpectedly, exhausted nearly all of my FMLA (family leave),” Garrett Haller told RH Reality Check. But FMLA provided Babs with time only. To cover expenses while dealing with the loss of one baby, her own fragile health and the health of her daughter before birth and then in NICU afterwards, Garrett Haller used a combination of accrued sick and vacation time as well as a brief period paid for by short-term disability insurance.
“Guidelines for short-term disability insurance are strict so it wasn’t in effect long. We appealed to my OB and Kate’s perinatologist/neonatologist to write letters requesting more time away from work.”
Still, after four weeks of bed rest, and two more months afterwards dealing with intensive care for her daughter, her employment was terminated.
Her husband was employed but not able to cover all expenses plus the immense burden of the new medical expenses they were now carrying. They were out of money – and time.
“After my FMLA ran out, I actually went back to work -- leaving Kate alone in the NICU -- in an effort to show good faith to my employer that I planned to return once things were more stable. Even with this effort and income, we still couldn't avoid the financial strife that followed. When my daughter finally came home from NICU, she was mine to hold, feed, have at home, free of wires and tubes but I had to choose between returning to work (keeping my job) or spending time with my new baby (getting fired).”
Babs “chose” to stay home – a decision she says she would absolutely make again – but it cost them everything:
“We just recently admitted to ourselves that we cannot recover from the financial trauma of being unemployed for a year, with medical expenses, having cashed out our retirement and maxed out our credit cards.”
Becoming pregnant and birthing a baby, should not throw families into poverty, frantically trying to find a way to piece together a puzzle only to find key pieces missing. Yet it does. Momsrising.org notes that:
“having a baby is currently a leading cause of “poverty spells” in this country—a time when income dips below what’s needed for basic necessities like food and rent. And, a full quarter of families with children under six live in poverty.”
Says Turner-Lee, “This country has no safety net for pregnant and parenting women – we make no provision for women having a normal birth let alone women who must go on bed rest, or who experience preterm birth.”
It’s enough to make you stand up and make change. It is exactly what Turner-Lee’s web site, Mamas on Bedrest & Beyond in partnership with organizations like David’s Keepemcookin.com and Better BedRest are doing. They offer support for and resources to women and their families, but they are also banding together to support paid family leave efforts in Congress. Calling the financial struggle women experience when on bed rest an “invisible crisis,” founder of Better Bedrest, Inc. Joanie Reisfeld says she and her organizational partners have met with Senator Barbara Mikulski (D-MD) to discuss the critical importance of paid family and medical leave, as well as increased funding for research into high-risk pregnancy. Mikulski was instrumental in the passage, in 2009, of the Federal Employees Paid Parental Leave Act giving federal employees four paid weeks of leave, of the twelve weeks total leave allowable.
Momsrising.org and their one million plus members continue to advocate for paid leave as a priority. Paid family leave, the organization notes, is a “key way to stop the downward economic spiral that happens to many women when children are born.” I’d add that the downward economic spiral often happens before children are born, when pregnant women struggling with a medical condition and to maintain a modicum of health and wellness for themselves and their babies must stop working temporarily without the financial support necessary to do so. To that end, the organization is pushing an expanded federal FMLA to include businesses with at least 15 employees, to cover more family members and to provide paid leave. They are also proposing the creation of a $1.5 billion fund for states that are passing paid family leave bills, to offset the costs.
For mothers who have been on bed rest, there is no shortage of creative suggestions for how this country can best assist pregnant women on bed rest: from supplemental coverage for all mothers who end up on bed rest for at least thirty days to extended leave options for mothers and fathers who have premature infants to emergency grants for families who find themselves in financial crises from an unexpected bed rest stint.
Unpaid leave is simply of no use to many working families who live paycheck to paycheck and cannot afford even one day without paid work. It’s a right for a privileged few Americans and even then it seems to be one without many benefits.
When it comes down to it, Turner-Lee says that most people are “summarily disgusted” about not having paid leave in this country:
“So many laws [governing the workplace] are antiquated – we have to make provisions for parents with children. Women now make up 52% of the workforce. If we stand up together and say this is absurd, then something will get done. We have to stand up and demand what we deserve.”
If you have a story to share, please check in with Mamas on Bedrest & Beyond. They will soon launch a campaign to raise awareness of the financial strain bed rest puts on pregnant women and their families. Please share your story by emailing [email protected]. These stories will also be used to raise awareness among lawmakers and to encourage them to pass paid maternity/family leave.