eSCAping Type 1

Yes, pregnant women can drink coffee. And eat seafood. And take certain medications. Yes, breastfeeding moms can also use formula. And drink wine. And pump less than five times a day. 

Yes, mom-shaming is a real thing.

And it’s not always someone scolding you for doing something “wrong.” Usually, it comes in the form of “Are you sure…?” or “When I did it…”

And, apparently, getting pregnant when you have Ataxia warrants a whole plethora of mom-shaming opinions. Oftentimes from complete strangers who feel the need to insert themselves in this intimate event.

You see, at least once a month some brave soul asks about pregnancy/parenting on one of the Ataxia support Facebook groups I’m a part of. And sometimes it gets answered. But, usually, people just spout off on how right or wrong the original poster is.

For example, a recent post simply asked if pregnancy could trigger an early onset of ataxia symptoms. It instantly got 50+ responses – most of which did not even address her question but instead offered incorrect PGD and other medical advice  – before I couldn’t take it anymore.

Now, I don’t usually write on those forums, especially in response to stuff like this. But this had reached a level of no return for me. So, I fired off that little comment and immediately came here.

My blog is a completely appropriate place to share my opinion. Plus, I like to think my experience of having SCA1 and becoming a mom a mere month ago validates this post a bit.

Obviously not everyone will agree with what I say, and that is perfectly fine! There is no “right” or “wrong” with this subject. But maybe someone out there is searching for more support of their decision. Or struggling with how best to express their own thoughts on this. Or would simply like to read the opposing viewpoint.

Either way, here are some comments taken directly from those Facebook boards, followed by how I’d love to reply. 

People with Ataxia shouldn’t get pregnant without doing PGD since they’re basically just spreading the disease and willingly putting their child at risk.

Now, what kind of monster would do that to their own kid, knowing how shitty this disease is? Oh, my parents, that’s who. And I, for one, am pretty happy they decided to have me. I’ve said it before and I’m sure I’ll say it again – I have Ataxia, but it’s not my whole life, and I have a great life. 

I am unbelievably thankful we were able to do PGD, but not everyone is given that opportunity. Like I’ve said, it’s expensive and time-consuming and emotionally & physically taxing and might not even work. It’s not the “simple solution” many people make it out to be. 

If you can do it, do it – it’s amazing that we live in a time where this is a possibility, and of course I promote taking advantage of that. But if you can’t, that doesn’t mean you shouldn’t have kids… You’re not “spreading a disease” – you’re spreading human life.

Plus, there’s always that 50% chance of naturally having a kid who doesn’t inherit SCA. That’s a higher percentage than a successful IVF cycle. And every single pregnancy has a risk of encountering medical issues or resulting in a baby with a disability. Does that mean NO ONE should have children without doing PGD?

No one should ever do PGD because it’s like playing God and crosses moral boundaries.

Honestly, I struggled with this a bit. But some couples legitimately do PGD/PGS to find out the sex and eye color of their embryos, & then determine which one to implant based on that. So I think our morals are still sound, since we did it to ensure our child’s good health.

Plus, doing genetic testing in no way guarantees a pregnancy. Regardless of what you believe in, there is something far beyond science at play here. We’re not necessarily determining fate – we’re just helping it go in the right direction. 

People with Ataxia shouldn’t be parents because they can’t care for a child the way an able-bodied person can.

You know what else I can’t do the same way able-bodied people can? Eat. And talk. And walk. And write. And you can be damn sure I still find a way to do all those things.

Could I raise my baby alone? Nope. But that was never a factor in our decision because we knew we had a ton of help and support from family and friends. Plus I have the most amazing husband/baby daddy in the world.

Speaking of dads… mine had Ataxia. And I still had a pretty great childhood. I had lots of friends and played sports and went on family vacations every year. Plus, I naturally acquired a level of compassion and acceptance far beyond what most children are taught. 

Finally, teaching teens made me realize that the emotional support a kid requires is almost as important as the physical support – especially as they get older. And luckily I’ve got that part down. I might not ever be able to run around a park with my kid, but there’s a whole lot I CAN do, so let’s focus on that.

People with Ataxia who have kids are just being selfish.

This comment legitimately makes me laugh because there was not a single second of my pregnancy that that word applies to. I can’t say I felt selfish at all in the 9 long months where I was literally sharing a body with another human being, who loved kicking my ribs while lounging on my bladder.

Sure, I’ve always really really wanted to be a mom. I can now safely disclose that that has been my wish while blowing out candles on my last SEVEN birthday cakes (yes, before I was married, shhh). And don’t get me wrong – I am usually a selfish person. I love having attention on me. 

However, I’ve always wanted to be a mom because I know I can provide a great life for a kid. And my husband really wanted to be a dad. And we’re going to try our best to be good at it.

Selfish? Eh, maybe. Call it what you will, but that mindset is what’s going to help my baby’s life be awesome. So…

People with Ataxia shouldn’t get pregnant because it exacerbates symptoms, making your disease progress more quickly.

Unfortunately, this does happen to some people. But you know what else does? The opposite.

There really isn’t ANY research done on Ataxia progression during pregnancy… However, several sources claim that women with Multiple Sclerosis (a somewhat similar disease) experience “fewer relapses,” “less inflammation,”  and “a decrease in symptoms” during pregnancy. I think that’s relevant.

A few women on the Ataxia Facebook pages said their symptoms progressed more quickly during pregnancy. Some even reported new issues that did not resolve after birth. But, like I’ve said, this disease affects everyone differently. And, luckily, my symptoms don’t seem to be affected.

Granted, I may have lost a lot of muscle being bed-ridden during pregnancy, but it’s nothing I can’t gain back. I’m already back to using my walker instead of a wheelchair when I can. Plus, being considered high-risk and monitored by a team of OBs helped ensure a successful delivery.

Also, want to know the ONE thing that makes this risk entirely worth it?

In regards to personal choices people make, pregnancy is probably at the top of the list. It quite literally affects no one except the couple directly involved. So, as always, think before you speak (or post) – no one likes a mom shamer.