Having a Baby Could Worsen My Multiple Sclerosis, But Does That Mean I Shouldn't Take the Chance?

I would have to go off of my medication for months, and MS relapses are more likely to happen right after giving birth.
Publish date:
June 3, 2016
multiple sclerosis, pregnancy, family planning, ms, medical issues

I was always on the fence about kids, but that changed when my sister had two. Getting to know her boys made me rethink the whole baby thing. While being an aunt is undoubtedly a very different scenario than having your own kids, spending time with her family made me realize how much I wanted my own.

Plus, my ovaries started firing. I don't think biology is a reason to have children, and I know how much of a cliche it is to say that hitting 30 set my biological clock ticking. But it did. I didn't expect it to, and I fully believe I could live a fulfilling life as a child-free person. And that might still happen. Because having a baby is incredibly complicated.

I was diagnosed with relapsing remitting multiple sclerosis two weeks after turning 30. A few months later, I began treatment, and as my MS was categorized as highly active — two relapses within a short space of time — I was prescribed an aggressive form of treatment. For just over two years, I've been taking Tysabri, a disease-modifying drug which is "a laboratory-produced monoclonal antibody ... designed to hamper movement of potentially damaging immune cells from the bloodstream, across the 'blood-brain barrier' into the brain and spinal cord." Basically, it stops my body fucking shit up in my brain and spine, keeps my nerve endings in tact.

So far, it's been working well for me, though it doesn't for everybody. The side-effects are minimal, but there are some major drawbacks to being on it. First, taking the drug may increase the chances of contracting "an uncommon brain infection that can lead to severe disability or even death." (Nice, eh?) Secondly, I can't conceive a baby while I'm on it.

Plenty of drugs stipulate that it would be dangerous to have a baby while you're taking them. A disease-modifying drug that's altering the make-up of my body would clearly be unsafe for a baby. So, the solution is obvious, right? Come off of the drug. Lots of people do just that — stop taking Tysabri, wait a couple of months for it to leave their system, and then try to conceive. Once the baby is born, a person can go right back on the treatment.

But there's a catch because of course there is.

What if you have underlying fertility issues but don't know it? What if your partner does? Not everyone falls pregnant instantly. It could take months to actually get pregnant, and that means months off of treatment, my MS clawing my body back any chance it gets. It's a fucking terrifying prospect, and one I can't imagine right now.

Pregnancy isn't specifically a problem for people with MS. According to the National MS Society, "pregnancy reduces the number of MS relapses, especially in the second and third trimesters." While this makes pregnancy a slightly more attractive prospect, the disease doesn't just go away. It lies in wait.

But once a person with MS has given birth, the disease fights back with a vengeance. The National MS Society notes that "Relapse rates tend to rise in the first three to six months postpartum." Apparently, this might be due to hormone levels, or perhaps the trauma the body has experienced in giving birth. Either way, MS relapses are more likely following birth. It's possible to restart treatment pretty quickly once the baby is born, but relapses are way more likely to happen, and no one wants that.

Which leaves me with the biggest question: taking all of these factors into account, would it be worth trying to have a baby? I'm with a person I'd like to start a family with, but we'd both be OK if it didn't happen — which is not to say that we don't really want it, just that we're realistic. A good first step would be fertility testing to find out if I'm even capable of conceiving, and for my partner to get tested, too. But it's a practical decision as much as anything.

If we're fertile, then getting pregnant should be fairly straightforward, I guess. Apart from the fact that it might take several months to happen — several months receiving no treatment for my MS, giving the disease a window to worsen. I'm fucking terrified, but I don't want to give up on the things I might want because of my disability. Why the fuck should I?

The unpredictability of MS makes the prospect of having a baby completely scary. What if the lack of sleep that's inevitable with kids makes my fatigue worse? What if I'm not physically strong enough to lift my child? What if I don't have the energy to keep up with them? I don't mean for this to be a pity-fest; these are just the questions I'm trying to answer so that I can get on with my life.

I can't stay on my current treatment forever as the longer I'm on it, the higher the chance I'll contract that fatal brain disease. Maybe that will be my window — the moment fate intervenes and makes the decision for me. Or I could just keep my life child-free, by my own choice.