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Having Children after a Diagnosis of Multiple Sclerosis

By Darbi J. Haynes-Lawrence and Adam R. West of Western Kentucky University
The diagnosis of multiple sclerosis typically happens during the reproductive and parenting years. It is common for families who have received a diagnosis to debate whether or not to have additional children or, in some cases, having children at all. Research indicates that for many women with MS, pregnancy is a time when the disease hibernates and they have little issue with relapses or other MS related difficulties. We conducted a study aimed at understanding decisions to have children after being diagnosed with MS. The information was collected through open-ended questions given to families where at least one parent has MS.

Three questions in particular helped us understand better the processes that families went through in deciding to have children after diagnosis. We will focus here on the responses given by female parents with MS:
  1. If you had children after your diagnosis, did having MS have any effect on making the decision to have children?
  2. Describe any concerns you had with having children after your diagnosis.
  3. What contributed to your decision to have children after your MS diagnosis?
Our study revealed that of 51 participants, 11 women had children after their MS diagnosis. Three women made a conscious choice not to have children after their diagnosis. The remaining 37 participants in the study did not have additional children after they were diagnosed with MS, but did not indicate whether it was a deliberate decision or not. For the remainder of this article, we will present a brief view into the decisions of the 11 women who had children after diagnosis. We will also explore how support systems could aide them better with their decisions to have children and help in the future with raising children. Names of participants have been changed to protect any possible direct identification.

Worry and Wonder

The women in our study were not going to allow MS to dictate their decision to have children or not. 
  • I was still young and I knew I wanted a family. I didn’t know the complications that were gonna come along. (Janet)
  • We knew we wanted to have a family. I came from a large extended family (my dad’s side – five kids, mom side – 14 kids) and my husband was an only child with very little family. It was important to us both to have children. (Amy)
  • I really wanted two children and I didn’t want my disease to run my life. (Sabrina)
  • We wanted a child to complete our family. We prayed about it and knew God would be with us. (Sarah)
  • I always wanted children and I thought MS would not stop me. (Connie)

However the decision to build or continue to add to their families did not come lightly.
  • Deciding to have children was not an easy decision for me and my husband. We knew we wanted a family, but struggled to decide if we should. Our thought was that every pregnancy carries its own risks so with the low percentage chance that our child would acquire MS there was also a good chance that there would be a cure for the disease if they were to acquire it. (Amy)
Sabrina agreed with Amy. Her decision to have a child was based on the idea that, “there is evidence that it [MS] is not genetic.”  However, she went on to say, “But I’m afraid that one day that will be proven wrong and my children will be at risk.”

To date, there is no definitive research indicating that children born to mothers who have MS will develop the disease. The chances of a child developing MS, however, are slightly higher than a child born to a parent without MS. Still the worry is there for some parents. Sarah summed up her worry with, “The fear of the unknown weighed heavily on our decision.”

Like many families in the United States, two women in the study did not plan their pregnancy, rather they were surprised by the pregnancy. Stephanie said, “I got pregnant by accident!  I was scared. I didn’t know if my baby would be healthy or if I would be healthy enough to take care of her.” Other mothers concurred yet remained positive with the outlook of the pregnancy.
  • Because [our son] was not planned and my husband and I were so stressed about the MS diagnosis, we just took the pregnancy as another hurdle to get over. I firmly believe everything happens for a reason. And he is here just as healthy as ever. A little miracle. (Kara)

Support Systems

How can we support women who have MS and have children? 

Doctors working as a team: Many women with MS have multiple physicians, including an OBGYN, a primary care physician, and a neurologist who is ideally an MS specialist. It is likely the MS neurologist is going to be farthest away from where the woman lives, because of the low number of neurologists who are MS specialists. It is imperative that all physicians work as a team with the patient, in order to guide her and her partner with the best information about pregnancy and MS. Questions that need to be addressed include: Is it the best choice for her to continue having children? What are the risks and rewards? Should a relapse occur, are medications available that are safe to use during pregnancy?

Resources for childcare: Childcare is a necessary resource for many Americans who have children and some type of employment. For families who have MS, however, childcare becomes an especially important component of family life. A mother with MS may not be able to work, for example, but needs access to childcare as she deals with the side-effects of MS such as fatigue and pain. As with most families who use childcare, cost is also an issue. In addition to the costs of childcare, MS treatments often require large out-of-pocket payments, even for those with health insurance. Community resources to help families, such as a Childcare Resource and Referral (www.naccrra.org), can benefit families looking for affordable, quality childcare in their community.       

Crisis nurseries: For families who do not need daily childcare, but occasionally need help watching their children for a short duration of time (i.e., less than two consecutive days), a beneficial resource is a crisis nursery. Crisis nurseries are child care centers that help parents during a time of stress and crisis. For example, during relapse episodes, parents may need childcare centers that can provide immediate supervision with short notice. A list of crisis nurseries throughout the United States can be found here: http://people.wku.edu/darbi.haynes-lawrence/crisis_nursery.htm

MS foundations and associations: A key source of information and resources for individuals with MS are support foundations and associations within their communities. These foundations and associations provide resources such as support groups for individuals and for families, fundraising opportunities, family weekend gatherings for families with MS and their children to socialize and participate in activities together, speakers who are knowledgeable on MS to share updated information during monthly presentations, assistance in meeting needs for individuals with MS, and an overall sense of community. Unfortunately, many are unaware of the existence of these foundations and associations. Of the parents in our study, 65 percent were unaware of these types of resources in their community. One way to bridge this awareness gap is to involve the support systems of MS patients as information disseminators. Medical professionals, for example, could serve as a link between the foundations and associations and their patients by giving a pamphlet or list of these community resources.

Research on MS and parenting has revealed two key points. First, pregnancy for the woman with MS typically results in a hibernation of the actual disease. As a result, the mother-to-be typically experiences little to no symptoms of the disease during pregnancy. Because of the hibernation, many women are encouraged to continue developing their families, including having children. Also, if the mother-to-be is taking any disease modifying medications, her team of physicians needs to complete an immediate and detailed review of the possible effects of these medications on the fetus.

Second is the concern about genetic transfer of MS from mother to child. Researchers understand that the risk of acquiring MS is slightly higher for a child born to a parent with MS as compared to a child born to a parent without MS. In order to move forward after diagnosis, families need clear information about pregnancy after diagnosis, medications acceptable to be used during pregnancy, and continued information on genetic factors of MS. 

Continued research will affect our understanding of the causes of the disease and subsequent treatments. For now, excellent physician teams, childcare resources, and community supports will affect our families and their day-to-day lives. MS is a disease that can easily rob bodies, minds, and spirits. The last thing needed is to have MS rob people of their abilities and desires to create and enjoy healthy, happy families. Pregnancy should be a time full of excitement, not worry and wonder.