It’s tough to be a new mother, whoever you are, whatever your income, wherever you live. But for women with chronic health conditions, it’s exceptionally difficult. Even breastfeeding can feel like an insurmountable task, full of uncertainties about the transmission of medication in breastmilk and the physical demands of holding an infant for long periods of time.
This past summer, an Obermann Interdisciplinary Research Grant team, aided by Spelman Rockefeller funding, began studying breastfeeding in women with multiple sclerosis (MS), a chronic disease of the brain and spinal cord. “There’s a huge gap of knowledge in regards to breastfeeding for women with MS,” say the grant project’s co-directors Christine Gill (Clinical Assistant Professor, Neurology), Pamela Mulder (Clinical Assistant Professor, Nursing), and Solange Saxby (Postdoctoral Research Scholar, Internal Medicine)—largely because pregnant and lactating women tend not to volunteer for research trials. It’s a serious oversight, since MS is three times more common in women than in men and is more frequently diagnosed in women of childbearing age (between 20 and 40) than in any other group. Symptoms vary among patients but commonly include fatigue, muscle weakness, tingling, numbness, vertigo, and walking difficulties due to nerve fiber damage.
Reflecting on her own clinical practice where she works directly with MS patients, Dr. Gill says, “I’ve had some women with MS say that their prior neurologist told them they shouldn’t have kids at all”—a judgment that, she notes, is not supported by current research, which indicates that women with MS usually have pregnancies as healthy as the general population’s.
But of course, when women with MS become pregnant, decisions get complicated and questions arise: Do I discontinue or change my medication while I’m pregnant? How soon after I deliver should I resume it? If I don’t resume my medication right away, will I be able to take care of my baby? Is it safe to breastfeed while taking my medication? What if my muscles aren’t strong enough to hold my baby while I breastfeed?
There’s some evidence that pregnancy provides protection against MS relapse, say the team—but in the first six months after delivery, the chance of relapse actually increases. As a result, women with MS are often advised to restart their medications or other disease-modifying therapies (DMTs) after delivery—and, out of fear and lack of information about the transmission of their medication in breastmilk, avoid breastfeeding. However, says Dr. Gill, “recent evidence shows that breastfeeding with certain DMTs is fairly low risk. The problem is, there’s not widespread knowledge in the medical community, even among neurologists, about which of these are considered safe and which pass into breastmilk.”
Many new mothers with MS, aware of breastfeeding’s enormous advantages for newborn nutrition and mother-baby bonding, commit to breastfeeding anyway, without their medications. As you can imagine, this can cause a great deal of anxiety. “They’re already stressed out as new mothers,” says Mulder, “but then you add worry about relapse and the physical challenges of breastfeeding with MS—possible muscle weakness, balance issues, numbness, sensitivity, fatigue, the fear of dropping the baby…. It can be an extremely stressful situation for these women.”
One thing that would certainly help, the team agrees, is up-to-date, evidence-based information about which DMTs are safe to use while breastfeeding—a list of which medications’ molecules pass into breastmilk, in what quantity, and whether or not these can affect the baby. (Not all MS medications that transfer into breastmilk are unsafe; for instance, certain medicines administered to the mother intravenously can’t be absorbed orally.) Moms with MS and their medical providers should also be aware of emerging evidence that breastfeeding can actually decrease the risk of post-pregnancy MS relapse and that breastmilk can help to transfer autoimmunity to the baby for the longer term and potentially reduce the risk of MS for the infant.
Gill, Mulder, and Saxby are convinced that, with the right education and support, new moms with MS can breastfeed with minimal stress and physical discomfort. The group’s mission is to empower these women and their doctors with evidence-based information so that they can make informed decisions about whether, when, how, and how often they breastfeed. As part of their Breastfeeding MoMS project (Breastfeeding for Mothers with Multiple Sclerosis), the group plans to create educational handouts, 5-minute videos, and lay-person blog posts for circulation among MS patients, their partners, and their various medical providers—everyone from GPs and neurologists to obstetricians and lactation consultants. The materials will provide information about the benefits of breastfeeding for mothers with MS and their infants, about different DMTs and their degree of safety for breastfeeding, and about breastfeeding techniques that minimize discomfort.
“There’s so much information out there about breastfeeding for healthy women,” notes Gill. “We really want to cater our materials to women with this specific chronic illness, because they have unique difficulties and necessities.”
Before they can create educational materials, though, the team wants to better understand healthcare practitioners' current attitudes, perceptions, and knowledge about breastfeeding for postpartum women with MS. So, with the help of Brian Bishop at IRB, they created a 47-question survey during their July 2023 Obermann residency and distributed it to UIHC nursing and medical staff. So far, they’ve received 119 responses. Now they’re busy analyzing the data and preparing to submit their study to the NIH Small Grant Program, hoping that additional funding will allow them to conduct one-on-one interviews with breastfeeding moms with MS. They’ve also begun drafting a few initial handouts for medical providers. Over the next few months, they hope to have maternal and partner education materials ready to distribute as well.
Ultimately, the group hopes that their work will empower women with MS to breastfeed, or at least to consider it. “There are so many ways to do this and make it work,” says Gill. “Don’t just rule it out.” She admits, though, that’s it’s never going to be an easy decision with a one-size-fits-all solution: “We medical providers really have to sit down and talk to our patients about what their goals and priorities are, and then come up with a plan that will work for them.”
The trio’s enthusiastic teamwork is clearly inspired by a desire to give breastfeeding mothers with MS the resources, support, confidence, and peace of mind they desperately need, especially at such an emotionally and physically trying time in their lives. In Saxby’s words, “We’re absolutely thrilled to be leading research efforts to address this need.”