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MS and Pregnancy:
The Motherhood Decision

by Mary Elizabeth McNary

Mary Elizabeth with her husband, Patrick and their twins, Aidan and Aisling
Mary Elizabeth with her husband, Patrick and their twins, Aidan and Aisling

The motherhood decision (the choice to forgo, start, or enlarge a family-whether by adoption or by pregnancy) is one of the most important that a woman ever makes. When the woman has MS, that decision becomes more complicated.

I have had multiple sclerosis since 1987. The motherhood decision was so difficult for me that I ended up spending several years in graduate school conducting research on the subject. The results of my study were published in a special, MS-focused issue of the Journal of Vocational Rehabilitation ["Themes arising in the motherhood decision for women with multiple sclerosis: an exploratory study," 12 (1999), 93-102]. InsideMS asked me to summarize my findings here, and I hope that the discussion will be helpful to any reader who is currently struggling with these questions. I wish you all the best, whatever you decide.

We are more like other women than not
As I began researching the professional literature on MS, I found that nobody had identified the themes that actually accompany the life-changing choice of whether to have a child when the potential mother has MS. I interviewed a small group of women with MS. I identified 27 themes that the women in the sample had considered as they made their personal decisions. Twelve of them arose in the motherhood decision of every woman in the study. I found it very interesting that of these twelve, only four were specifically related to MS. The professional literature had neglected to mention that women with MS are more like other women than we are different from them.

For example, every woman thought about how having a child would affect her life's work, be it inside or outside the home. Every woman with a partner considered that partner's role in parenting a child. Everyone thought about the demands and responsibilities that motherhood imposes and about the people and organizations that could help. Almost everyone in this study expressed concerns about financial resources, justice, equity, stress, and burn-out.

What MS added
What did MS add? Each woman I interviewed had considered the possible effects of MS on the members of her family, and on the family dynamics. Each had reviewed her own physical and cognitive capacities and all had considered the negative changes caused by MS. All expressed concerns about their future abilities to perform tasks. Some, but not all, worried about the effect of future disability on their children's emotional health. Because this was a small, qualitative study, it is difficult to draw any firm conclusions. What issues do women with MS explore? What issues do they tend to avoid? A much larger study is needed to answer these questions.

One important concern that might arise in the motherhood decision of a woman with MS is the question of whether she risks passing the disease on to her child (see "Hot Button Issues"). This did not happen in my study, possibly because the women in my sample were well educated about the disease and probably knew that the risk is low.

Creating a climate of respect
Examining the themes that arise-or fail to arise-in the course of making this choice would have implications for the doctor-patient relationship, family counseling, rehabilitation, and creating a climate of respect for the decision regardless of whether a person decides to become a parent or not.

For some people, life without children is a viable choice that should be respected—not condemned or pitied.

For others, life without children is literally unlivable. Can support be found to make parenthood possible for each man or woman who desires it regardless of any potentially disabling condition that person may have?

 

 
     
 
For additional information
 Family and Friends
 MS and Pregnancy
 Who Gets MS?
 
 
  Mary Elizabeth McNary's story of her own pregnancy and its outcome is the "Surprise! Surprise!" article of this brochure.  
     
  Last updated May 2006  
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