Research: information about having a baby with MS

Epub: Kosmala-Anderson & Wallace. A qualitative study of the childbearing experience of women living with multiple sclerosis. Disabil Rehabil. 2012 Oct 17.

Background: Although at any time in the UK, there are about 20,000 women with MS who may be considering having children, healthcare systems often fail to provide them with information and support they need to make informed decisions about their health and pregnancy management. 

Aim: The aim of this paper is to explore the childbearing experience of women MSers to determine what support and information may be useful to this target group.

Method: Interviews were conducted with women with MS (n = 9). Transcripts were analysed using thematic analysis.

Results: Three major themes emerged from the interviews with women living with MS. We found women were concerned about both medical and practical issues associated with having children. Limited access to information about relationships between MS and childbearing and receiving conflicting or wrong information was recounted. Opinions of family members and clinicians regarding having children in the context of MS impacted on women’s experience of making decision about having children and childbearing.

Conclusions: Women with MS can benefit from having access to comprehensive, structured sources of information about MS and childbearing. Healthcare professionals and family members’ support could be channelled more appropriately to enhance their experience of making choices about childbearing.

“If you are woman with MS do you have an opinion? This is a small qualitative study that many will call ‘soft science’. However, the topic is important and if we want to provide holistic care for woman with MS we need to address how we handle the issue of pregnancy and the advice we give. Misinformation or inconsistent information is one way that we let MSers down.”

Other posts on pregnancy and MS on this blog:

25 Oct 2012
Following a previous study assessing the safety of interferon beta (IFNB) pregnancy exposure in MS, these investigators aimed to assess pregnancy and foetal outcomes after in utero exposure to GA, using the same dataset, 
14 Aug 2012
The mean annual relapsing rate 4 years prior to pregnancy was significantly higher than at the subsequent 6 years after delivery (1.06 vs. 0.45, p < 0.001). In addition, the annual relapsing rate in years prior to pregnancy was 
05 Jun 2012
BACKGROUND AND OBJECTIVE: Women with multiple sclerosis (MS) who intend to get pregnant are often advised to discontinue disease modifying therapy (DMT) prior to conception. This recommendation is not based on 
14 Apr 2012
The investigators reviewed medical records and used a structured questionnaire to investigate gravidity (number of pregnancies), parity (number of births), and the number of relapses during the 2 years before pregnancy, 
11 Oct 2012
To investigate if women with multiple sclerosis (MS) experience changes in MS symptoms related to pregnancy, the postpartum period, menopause or use of oral contraception (OC) or postmenopausal hormone therapy (HT).
28 Jul 2011
This allowed these investigators to study the association of maternal milk intake, maternal dietary vitamin D intake, and predicted maternal serum vitamin D during pregnancy and their daughters’ risk of developing MS.
16 Jul 2011
“Because of this study, and the fact that pregnancy itself reduces the attack rate, researcher’s have been trying to find out what it is about pregnancy that is so beneficial for MS’ers.” “We assume that the profound changes that 
16 Sep 2011
21/101 (21%) of births to MS women treated with DMD prior to pregnancy were exposed to a DMD. In all cases, exposure was documented as unintentional and DMD treatment was stopped within 2 months of gestation.
31 May 2011
Of the women exposed to natalizumab during pregnancy, 29 women gave birth to 28 healthy children; one child was born with hexadactyly (an extra finger), 5 pregnancies ended in an early miscarriage and one woman 
15 Jul 2011
The average or mean rate of relapse was 0.7 per year in the year before pregnancy, 0.5 during the first trimester, 0.6 during the second trimester and 0.2 during the third. The rate increased to 1.2 during the first three months 
27 May 2012
Prospective studies have reported a significant decline by two-thirds in the rate of relapses during the third trimester of pregnancy and a significant increase by two-thirds during the first 3 months post-partum (after delivery).
20 Dec 2010
A report on 88 pregnancies in Italian woman that were exposed to interferon-beta (average exposure 4 to 5 weeks) has demonstrated that exposure to interferon-beta was not associated with an increased risk of spontaneous 
16 Jul 2012
Of the 20.9% of participants who decided to become pregnant (or father a pregnancy) following a diagnosis of MS, 49.5% had two or more pregnancies. Conclusion:This study indicates that an MS diagnosis does not 
19 Sep 2011
Natalizumab did not affect the ability of treated males to produce pregnancies in untreated females. In female guinea pigs, no treatment-related changes were seen in uterine weights or ovary weights. Pregnancy rates were 
05 Aug 2011
As is well known the relapse rate decreases during pregnancy, but as is known to occur there was a surge in relapses within 3 months after the birth. However when doctors looked at 9 months after birth compared to before 
13 Jul 2011
The only significant predictor of having a relapse after childbirth was an increased number of relapses in the year before pregnancy and during the pregnancy itself. Therefore, the reported association between breastfeeding 

5 thoughts on “Research: information about having a baby with MS”

  1. Wasn't there a time when women with MS were advised not to have kids? Why was that?In fact, 20 years ago, according to my physio, MSers were advised not to excercise because it was feared it would make the MS worse.How can such modes of thinking turn 180 degrees within a generation? What if the advice given now for some things for MS survival turns out to be completely wrong in a decade?

    1. Very true. Saw a video of an MSer in a wheelchair. He says he wishes that when he got MS he hadn't chosen to go on DMTs and had followed a regime of excercise instead. He said he reckons he wouldn't have ended up in a wheelchair so early had he kept more active.At the end of the day neurologists are as much in the dark as we are. How can you fix something when you don't know why it's happening.

    2. Exercise and DMTs are complementary. Exercise can't replace a DMT. Even normal people need to exercise. It is not wise to assume exercise is a cure or treatment for MS. There is no class 1 or 2 evidence to support the latter.

    3. Well science and knowledge moves on! We now have DMTs and think we can modify the course of MS for the better. Neurologists have also become less paternalistic; very few would make such sweeping statements. One reason this blog exists is to show you how rapidly knowledge is evolving and how attitudes have changed or are changing.

  2. "he hadn't chosen to go on DMTs and had followed a regime of excercise instead." Why either/or? Surely he could have exercised and taken his DMT…

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