Making the decision to have a baby when you are living with Multiple Sclerosis can be a challenge. Heck, making the decision to have a baby without MS isn’t easy. While my husband and I were discussing our plans, it seemed that "experienced parents" came out of the woodwork to bestow their knowledge on us. And everyone had a similar message. "Your life will change forever." Okay… thanks for that tidbit of wisdom… she says as she politely nods and walks away.
In retrospect, I think it might have been more appropriate to say- you will find a love you have never known. (I suppose know-it-all types like to be more foreboding) Anyway, that was my experience. I just couldn’t believe that "this" is what so many people were doing… having my daughter was so profound it defied words.
With so many unknowns that exist in all pregnancies - How long will it take to get pregnant? How will it feel to be pregnant? How much will it hurt to get the baby out of me? - coupled with all the question marks that MS adds to the equation, it’s hard to think straight. Of course this inability to keep all the thoughts together is further preparation for parenting.
So, when my husband and I began to fine-tune our decision, we only did as much research as we had to in an effort to get by, not wanting to find any reason to be discouraged. "What to expect, when you are expecting" in the life of a person with MS would be more aptly titled "What you didn’t expect while you’re expecting, and every other day for that matter." Although I had researched specific concerns, when push came to shove, we knew we wanted a baby. And if having MS has done anything for me, it has taught me that I can endure whatever mystery lies around the corner. So here is my MS pregnancy story, or the start of it. I hope it is helpful and inspires further conversation.
8.5 months pregnant, 13 years with MS
Back in the year 2000, when my husband and I had time to talk to each other about our hopes and dreams, we decided that we would go for it and have a baby. Oh silly us, we forged ahead in spite of the ambiguous warnings and the many question marks. We wanted a baby, and no warning or reason would change our minds!
I had been on Copaxone for 7 years and feeling the benefits of it daily. Even though there was evidence at the time that I could stay on my drug of choice through the pregnancy, it didn’t feel "right" to me. I had learned from the "light reading" I had done, that while you are pregnant your immune system calms down to allow for the guest cells (the baby) to exist without rejection. So during those nine months MS wouldn’t likely be an issue. (Uh Honey, How many kids are you willing to have?) What did concern me, though, was the period of time after I stopped the Copaxone and before I became pregnant.
Depending on how long it took to conceive, I could be in an unfortunate waiting game without anything to prevent a flare up. (No pressure, mind you!) And at this point, I should have bought stock in ovulation predictors, because that was how I made the most of the short period of time I wanted to spend trying to conceive. And four months later, the bun we now know as Madeline was in the oven and working on her nine-month bake.
Being pregnant with MS was wonderful. Of course, like most pregnancies I "enjoyed" the morning sickness, heartburn, the need to eat bizarre things at bizarre times - for me that was an obsession with oranges, root beer floats and pickles, separately for the most part but sometimes together in the wee hours - and of course weight gain. I must say that it was fun eating for two. It’s not often socially acceptable to go nuts at a buffet. But when you are pregnant, people point and exchange coy smiles. So the hunger and satisfying the hunger were tons of fun. Of course this seems like a fair reward after living through the first three months of vomiting. No one told me that morning sickness is just an expression, and that it could last throughout the day. (Sigh. I digress.)
Most importantly to note is that what they say about feeling good during pregnancy when you have MS was true for me. In spite of all the drawbacks, I felt better than I had in years. My energy was up and I was all-a-glow. Interestingly, the challenging stuff that pregnancy requires of a woman is not entirely unfamiliar to someone living with MS. Once it is evident to the outside world that you are pregnant, it is socially acceptable to need a bathroom RIGHT NOW. Or to need a seat on a crowded subway even if you look young and able-bodied. The royal treatment that I could benefit by everyday had me looking at my maternity clothes and some laundry filling with a light-bulb over my head. (Note to self- after my baby is born…)
During my pregnancy it was advised that I stay on most of my symptom specific meds. I took Ditropan for incontinence, Macrobid to prevent bladder infections and used self-caths throughout. This was helpful as in the last trimester the need for all of the above had dramatically increased.
And the big day arrived. Just a few days after my due date, Madeline was born. I went in to labor at around 3am, stayed at home enduring increasing contractions until about 5:30am. (He said: Hey honey, why don’t you sit on this ball like we did in the class… to which I interrupted: DON’T TELL ME WHAT TO DO.) Off to the hospital arriving at 6am and Madeline was born by 10:30am. It was a picture perfect pregnancy and delivery.
It is a story I would have like to have read before we went through the process; a reassuring one that gave me the foreknowledge that a person who had been living with MS for 13 years could effectively have a baby, with symptoms and medications considered.
Getting home and learning to adjust to our family of three had its challenges. Breast-feeding and post partum fears took center stage. Sixteen days after Madeline was born, was September 11th.
~ This series, "MS aParent" discusses the details of living with MS and parenting a child and will be a regular series. Upcoming posts will be Bringing Up Baby, Teaching to Walk When It’s Not Your Strongsuit, and more. If you have a topic you would like to be discussed, please reply to this post.