“Parenting is a unique opportunity to bring meaning and life satisfaction to someone who is otherwise unable to maintain full time productivity. Parenting with ME/CFS is very possible if everyone is willing to make the adjustments needed. ” Lucinda Bateman MD
Women with ME/CFS face challenging choices when it comes to pregnancy and child raising. In this month’s education meeting (August 2018), Peggy Rosati Allen, a certified nurse midwife and nurse practitioner with a PhD, presents childbearing research and strategies, then moderated a panel of three mothers with ME/CFS to explore the process of pregnancy and postpartum ramifications.
Professor Allen acknowledges the difficulties inherent in parenting with ME/CFS, explaining that the decision about whether or not to bear children is really a personal one, and ideally should be made thoughtfully, with careful consideration about your life circumstances – what are your most important dreams and aspirations for your life … [or] life as a couple? … What are the limits of illness … and what are your resources for support?”
Professor Allen explores the research surrounding ME/CFS and pregnancy to help people better set expectations and assess their resources. While the research literature is disappointingly scarce and slow-moving, it does suggest several important pieces of information. For those who wish to study this research in more depth, Professor Allen recommends the 2004 research paper, A comparison of pregnancies that occur before and after the onset of chronic fatigue syndrome by Richard S. Schacterle and Anthony L. Komaroff as the most comprehensive information to date, a questionnaire sent to 86 women with 252 pregnancies before and after the onset of CFS.
Below are several key findings about pregnancy with ME/CFS:
- Fertility and pregnancy issues are more common in women with ME/CFS than in women without ME/CFS, but these issues are sometimes treatable
- There may be a “higher rate of first trimester miscarriages”
- ME/CFS symptoms tend to remain the same or improve during pregnancy
- There is “no increase in complications like preeclampsia, gestational diabetes, preterm labor, or low weight babies” for women with ME/CFS
- Though this topic has not been specifically studied, there is “no current evidence that ME/CFS can be passed on to the fetus during pregnancy or through the mother’s milk, even for women with post-viral onset ME/CFS in spite of evidence the illness has a familial pattern
- The “physiologic stress of childbirth may trigger ME/CFS relapse … typically at 3-6 months postpartum, which is often times severe”
After covering the research around the risks to mother and child associated with ME/CFS, Professor Allen discussed key actions for women who wish to go ahead with childbirth. These approaches, while they do not guarantee a perfect pregnancy, can significantly ease the physical, mental, and emotional burdens associated with childbirth.
First, consult with good medical providers:
- Talk with your women’s health care provider — and ME/CFS specialist if you have one — before you conceive
- Seek an OB provider who either has experience with high risk pregnancies, and ME/CFS or who is willing to learn
- Consider a doula. These professionals can provide a wide range of services, from education, to physical and emotional support during labor, to postpartum assistance.
Second, prepare your body and mind for the demands of pregnancy:
- Talk with your medical provider about what medications may need to be discontinued during pregnancy, and the associated risks and benefits. Happily, a surprising number of medications are safe for use during pregnancy and many can be stopped without too much problem.
- Empower yourself by listening to positive birth stories and by educating yourself through readings and meetings as able.
- Pace your energy carefully to conserve strength
- Consider prenatal yoga as a way to moderate stress, pain, and symptoms
Third, be ready for labor and birth:
- Stay hydrated during labor with IV fluid to support low blood volume.
- Talk with your OB about receiving a “stress dose” of hydrocortisone during labor and in the first 4-6 hours after birth. This may help your body more positively respond to the stress of giving birth. If your OB has reservations about this, talk with a maternal fetal medicine physician specialist, who is trained to help in pregnancy situations with low research.
- Balance walking and frequent position changes with needed rest (particularly rest while lying down on your left side). Be careful of hot baths and showers during labor and birth – overheated water may increase fatigue and relapse during this period, and water baths require enough energy and mobility to rapidly stand for safety reasons
- Consider epidural anesthesia if labor is prolonged
- Avoid elective cesareans – ME/CFS alone is not enough reason for a cesarean, and cesareans heighten the risks of further surgery and a longer recovery
Fourth and finally, Dr. Allen advises prospective parents to make plans for postpartum adjustments:
- Build a strong network of support through hired help, family, friends, and or/church members to cope with stress and physical challenges
- Consider a home help nurse visit soon after giving birth to evaluate and coordinate recovery care
- Track how nighttime sleep disruption affects you, and enlist help or adjust where needed
In the panel discussion segment of the education meeting, three mothers with ME/CFS gathered to discuss a variety of topics related to pregnancy and child raising with ME/CFS, with Doctor Allen as the moderator.
When asked about the ease of pregnancy, the group had varying experiences but agreed that successive pregnancies tended to get more challenging, with age as a definite factor. All agreed that it was realistic to plan for moderate bed rest for the duration of the pregnancy. When it came to medical care, each mother agreed that it is important to get a doctor who is “willing to listen and willing to learn,” which takes trial and error and knowing yourself well. Further, stress doses of hydrocortisone and consultations with maternal fetal medicine physician specialists were quite useful, particularly for first-time mothers.
When it comes to parenting with ME/CFS, the panelists suggested a wide array of strategies. First, carefully timed childbirth and social support can make a decisive difference. Each panelist spaced their children several years apart and built wide support networks for help on the worst days. “If people say ‘hey, what can I do to help you?’ give them something to do!” one mother advised. Another mother pointed out that surrogacy, though quite expensive, can be a good alternative to the tiring pregnancy and postpartum periods.
Strategic equipment use also proves a valuable coping strategy, from getting a boppy or My Brest Friend to help with breastfeeding, to keeping a changing table in convenient, unorthodox locations to ease “the up and down,” to purchasing lightweight equipment to minimize pain and fatigue.
Each panelist advised mothers with ME/CFS to think outside the box and not feel guilty for adaptations that ease their burdens.
While ME/CFS may mean a lot of parenting from the bed, it does not limit the depth of the mother’s relationship with their children – homework, movies, card games, and snuggling can be frequent bed activities, and the panel agreed that having a parent with chronic illness helped their children become more compassionate and patient with others.
Ultimately, for one of these mothers, “We’re all going to have crashes anyway. I’d much rather have a crash because I did something serving my kids than for any other reason on the planet.”
The Bateman Horne Center deeply desires to support people with ME/CFS and FM in all stages of their lives. Help us reach our vision of a world where patients with ME/CFS and Fibromyalgia are readily diagnosed, effectively treated, and widely met with empathy and understanding by making a donation, joining our research-ready army, or following us on Facebook, Twitter, or Instagram.