Today, I’m sharing my experiences of pregnancy, birth preparation, giving birth, the postpartum period, and breastfeeding with MS. I’ve now had the privilege of experiencing this exciting time twice. Fortunately, everything went quite smoothly for me, and I want to encourage you to fulfill your dream of having children if that’s what you want.
Are you currently thinking about having children or would you like to find out more in advance? In this article, I share my experiences of pregnancy, childbirth, and breastfeeding with you and give you some tips. Having children with MS is usually just as easy or difficult as it is without this diagnosis. However, more planning is required to keep the disease under control so that you can focus mainly on the anticipation and then on your baby.
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Diagnosis and desire to have children
At the time of my diagnosis, having children was still a distant prospect for me. I didn’t have the right partner, nor could I see myself in the role of a mother. That was a good 20 years ago.
I was 23 years old at the time. I was also plagued by doubts. Could I be a good mother with MS and provide my child with everything they need? Today, I know that children need love above all else, parents who give them time and attention and accompany them on their journey through life in a way that is appropriate for their age.
I am now the proud mother of two healthy and happy daughters. My eldest is already six years old and will be starting school soon. The little one is one year old and tries to copy everything her big sister does.
My eldest knows that I have MS and that I therefore place great importance on a healthy lifestyle. She knows my neurologist and knows that I follow my treatment plan to the letter in order to do everything I can to stay as healthy as possible.
Pregnancy with multiple sclerosis
In short, my attitude changed. And in April 2018, I became pregnant for the first time. I continued taking my immunotherapy until the end of the first trimester, as it was classified as safe and is now even officially approved for use during pregnancy and breastfeeding. Then my therapy-free period began.
The likelihood of new relapses in the second and third trimesters is extremely low. And if you have a mild form of the disease, as I do, this is the usual course of action. I had no problems whatsoever with MS. And during my second pregnancy, I followed the same procedure in consultation with my neurologist. This time, I even had the in-depth knowledge from my multiple sclerosis management course.
Birth preparation course
We opted for a compact course that lasted from Friday to Sunday. On Sunday, the expectant fathers were also invited. The midwife explained exactly how the birth would proceed, what stages there would be, and how the baby would move and push through the birth canal at each stage.
We practiced breathing techniques for the different stages. She also answered lots of questions and encouraged us. She talked about the medication available to help during labor and other ways of relieving pain. By the end, I was confident that everything would go well.
Incidentally, we can use all the support options available during labor without hesitation. There are no restrictions due to my MS. This also applies to epidural anesthesia.
During my second pregnancy, I briefly considered taking another course. However, time was already tight enough with my older daughter, who needed attention, my studies, my self-employment, and the two podcast episodes that were now being released—one in German and one in English. So I decided not to take a birth preparation course. It would certainly have been good to refresh my knowledge. But it worked out fine without it.
The delivery
Until two days before the birth, I was still cycling slowly and very carefully. My waters broke in the early hours of the morning, two weeks before the due date. We stayed at home for the first 13 hours as there were no intense contractions.
When we arrived at the hospital, everything calmed down, which is often the case. The hormone responsible for labor is considered shy. But after long walks and climbing stairs, things started to move.
The delivery itself was natural and without complications. I didn’t need an epidural or any other support. When I finally held my daughter in my arms, I was overcome by an incredible wave of happiness.
A total of 22 hours passed between my water breaking and the birth of my first daughter. However, only the last three hours were painful.
My second daughter took her time and arrived seven days after her due date. And because I was slowly getting tired of sleeping poorly and the constant checks at the hospital to see if she was okay, I climbed the stairs at our vineyard and went for a long walk to get things going. That finally helped. And this time, it only took 11.5 hours until I held our second treasure in my arms, with only 45 minutes of intense pushing.
Postpartum
We were discharged from the hospital after three days. Everything was fine, nothing unusual. And I felt much fitter than the mother in my room who was 15 years younger than me.
Of course, the first few weeks and months are exhausting, especially the lack of sleep. But with two people or the support of family and friends, you can compensate for a lot. Because then you need someone to make sure you get enough to eat, the laundry gets done, and you can take a shower every now and then.
Since our families lived at least two hours away by car back then, we were on our own. But that wasn’t a problem. My boyfriend took the first six weeks off, combining parental leave and vacation. He took care of the meals, took our little one when I wanted to take a shower, and supported me wherever he could.
The second postpartum period in the hospital was much more relaxed, as I stayed alone in my double room and only received visitors, i.e., my husband, our older daughter, my parents, and my sister.
Things were much more turbulent at home. After all, I didn’t want our older daughter to feel neglected. My husband took a month of parental leave. I think that’s really important, as I needed to recover physically from the birth.
Overall, however, I was back on my feet more quickly because I simply had to be in order to play with my older daughter, take her back to daycare after a few weeks off, and get back on my bike, which is an e-bike with a bike trailer for the children and an extra hammock insert for the little one.
Breastfeeding
Breastfeeding worked well right from the start. My daughter stimulated milk production very successfully right from the beginning. And thanks to the tips from my midwife, I knew what to do when she changed her feeding pattern and my body had to readjust.
I regulated my milk supply with cooling quark wraps, a breast pump, and a cup of peppermint tea. And when she needed more, I drank lots of water and breastfeeding tea.
As I didn’t experience any relapse while breastfeeding, I was able to continue. My daughter enjoyed breastfeeding so much that we were doing it for very long. In total, I breastfed her for just over three years, although by the end it was just a bedtime ritual. And after a little over a year, I started my therapy again, as the small amount of breast milk posed no risk of the medication passing to my daughter.
With my second daughter, breastfeeding worked wonderfully again. She now eats our food very well instead of baby food, but I still breastfeed her several times a day. We’ll see when exactly I start my immunotherapy again. The last MRI and the measurement of my NfLs in my blood were normal, so there’s no rush, but it will start again soon.
Re-entry immunotherapy
When my first daughter was a little over a year old, I had my first MRI after birth, which revealed a small new lesion. I also had a slight numbness in the third and fourth toes of my right foot. After a good two years, this numbness disappeared. Until the MRI results came back, I hadn’t paid any further attention to it and put it down to an incorrect breastfeeding position, because I always held my foot up on tiptoes. Well, it would be nice if everything stays calm this time. And so far, it looks good, as the tests have not shown anything and I haven’t felt anything.
I remain convinced that disease-modifying therapy is one of the most important building blocks for my long-term health. MS rarely lies dormant for long if you don’t fight it.
I will resume the therapy I have been following since the beginning, as it works well for me and I am accustomed to it. Should a change in therapy become necessary at some point, I will comply. I adhere to the medical principle of as much as necessary and as little as possible.
Ultimately, it should always be a personalized decision, and the therapy should be tailored to the progression of your disease and your preferences.
Tips for you
If you are planning to have children, you should definitely talk to your neurologist about it. For me, it felt strange to involve someone who was essentially an outsider, but the health of the unborn child comes first. Your neurologist knows which medications are critical, whether it makes sense to switch or discontinue them, and what else needs to be considered.
There is now some very good information in English on the subject of fertility and MS, and it makes sense to find out about the general conditions in your country. I think most MS patient organizations have up-to-date information specifically on the subject of fertility and MS.
If you are pregnant and there is a study running in your country, a so-called registry where your data and that of your child are simply recorded, it would be great if you could participate and help build up even more knowledge. I did this during my second pregnancy and data will continue to be collected for the first six years. This helps to evaluate the safety of immunotherapies and make recommendations for other pregnant women with MS.
Who should know about your MS diagnosis?
Tell your gynecologist which immunotherapy you are taking and whether your neurologist has given you any special recommendations. If you are taking any other medications or dietary supplements, I would also mention these. This will allow your doctor to consider possible interactions if you need medication for your thyroid, iron deficiency, etc. during pregnancy.
Your midwife should be aware of any restrictions and symptoms. This will enable her to provide you with the best possible care before and after the birth.
The hospital should note in your medical history form that you have MS, what immunotherapy you are taking, and whether you have any restrictions. This is because you will not be able to think clearly during labor.
Good luck!
Finally, I would like to wish you the best of luck in fulfilling your dream of having children. Try not to worry too much and enjoy the anticipation of your little miracle. You will certainly be a wonderful mother in your own unique way.
Further information
You may also be interested in the following article on this topic:
Many thanks for the positive insight views into the topic of pregnancy and lactation with MS.
See you soon and try to make the best out of your life,
Nele
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