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Multiple Sclerosis during Pregnancy and Breastfeeding Mothers' Stories
Updated February 2016
Andrea Permutti, Berlin, Germany
Photos: Kate Nolan Photography

 

I was 28 when I was diagnosed with multiple sclerosis. Having just started out in a good job and about to get married, the diagnosis was a severe blow.

The moment I accepted it was when I learned that I could still have children. I would have to stop taking the protective treatment with interferon during pregnancy but could take it up again immediately after giving birth. (Interferon medication helps control the immune system.) I was told I would have to renounce breastfeeding while taking interferon but, at that point, this particular detail did not strike me as important.

Fortunately, my condition turned out not to be severe and at 32 I was pregnant with my first daughter, Nella. Like many women in their first pregnancy, I started to read lots about what would be best for my child, and I was astonished how often I came across breastfeeding. My own mother had been unable to breastfeed me, and I was sure I had not been deprived of anything. Now, however, I began to understand that my many allergies, and maybe even my MS, as an autoimmune disease, might be connected to that very fact.

I started researching how I might breastfeed without having to give up my treatment. I knew I could not just stop taking my injections because while the condition is usually put on hold by pregnancy, the risk of a postpartum episode is especially high without any treatment. Doctors and pharmacists still recommended not to take interferon while breastfeeding, but there was the possibility of getting infusions of immunoglobulin once a month instead. Unfortunately, this very expensive treatment had not yet officially been approved for MS, so my medical insurance would not cover it. Only after several expert opinions and the threat of a lawsuit did the company give in.

Mothers'Stories_MultipleSclerosis_Kate-Nolan-1The whole pregnancy and birth passed without any problems. My daughter was immediately put to my breast and, right from the start, breastfeeding worked fabulously. I received the first infusion in the delivery room and several more during the following days in hospital. After that, I had a monthly immunoglobulin session with my neurologist and I did not suffer a postpartum MS episode.

During all that time, Nella received nothing but mother’s milk and she developed as well as we could wish for. When she was five months old, however, I started to get uneasy because my insurance would permit me only six months of immunoglobulin and Nella showed no interest whatsoever in any other food yet. As the time of weaning drew close, I grew desperate. There was simply no other way of feeding my daughter.

Again I started researching and, on the recommendation of a Berlin La Leche League Leader, I contacted the embryotoxicologists at a well-known Berlin hospital. The information I received from them was that there was little data on the actual effects that interferon had on a nursing child, but from what they did know about interferon being produced naturally in the body, there would probably be no effect at all. That was when I decided to take the risk. Of course, we did introduce more and more food along the way, but I took up my interferon injections again and breastfed my daughter for two and a half years.

During all that time, my condition had not worsened, and when Nella was three, we opted for a second child. Again, I stopped taking the interferon injections, the pregnancy was problem-free, and as birth approached I readied myself for the impending argument with my medical insurance company concerning the infusions. Or so I thought. When I researched the current legal status of the affair, I learned that, in the meantime, many other mothers with MS had done as I had and breastfed under interferon. By that time, there was enough data available to declare safe not only breastfeeding without giving up the injections, but even not to stop taking them during pregnancy itself. I was very relieved.

kate-Nolan-multiple-sclerosisThe only problem left to solve was how to introduce the medication again, so the protection would be fully working by the time I gave birth. The introduction always comes with heavy side effects, so my neurologist and I decided to try something completely new: introducing interferon during late pregnancy by slowly augmenting the dose over a period of four weeks. Long story short: I felt no side effects at all, and my second daughter, Amelia, was born without any complications. Again, I did not suffer a postpartum MS episode and breastfeeding again works wonderfully.

My hope is that by and by more and more mothers with chronic conditions will find the courage to question recommendations not to breastfeed under medication. Sometimes renouncing breastfeeding may indeed be necessary, but there may often be a way to combine what is best for mother and child.

Resources

Hale, T. W. Medications and Mothers’ Milk, 16th edition, 2014. This gives descriptions, kinetics, pregnancy risk categories, lactation risk categories, and clinical information about each drug listed.

Is Breast Always Best?

LactMed

Medications and Mothers’ Milk


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