Pregnant and Epileptic- What it's really like
Updated: Jan 9
In this post, I'd like to give you a bit of an overview of what this pregnancy has been like for us far.
Let's Start at the Beginning (a very good place, I hear)
Right now, I am 30 weeks pregnant with a longed for, worked for and much awaited tiny human. My husband and I went through years of fertility treatment and IVF to get where we are right now, and it is the most amazing feeling!
And then there’s my epilepsy. Going and complicating things that didn’t need to be further complicated in the first place!
After years of dealing with my condition, I’d gotten used to the routine of looking after myself, and managing my triggers. I’d gotten down to less than 5-6 seizures a year and I was doing well. My husband and I knew the routine, and it wasn’t a major set-back if a seizure did happen. I’d even gotten used to the everyday anxiety that comes with the looming threat of a seizure.
But then we got our miracle second pink line and everything...shifted. At first, I was so consumed by keeping the tiny apple-seed sized ball of hope in the right place that I didn’t think much on the seizure side of things. That is, until, we met with our midwife for the first time.
Meeting with the Professionals
We brought it up with her the first time we met, because we knew it was important that she knows and we figured that it would have an impact on my care. We also needed someone who knew how to care for women with epilepsy. Fortunately, she was understanding, reassuring and has experience. But it definitely was a bigger deal than I’d let myself think about.
First things first, any seizure I was to go straight to hospital. Baby would need to get checked out, I would need to be checked out. This was no longer a situation that could be handled by bundling me into the car the moment I was able to walk and then putting me to bed- this needed medical attention.
Secondly, hospital birth. Not much wiggle room. Too many risks and unknowns.
We agreed. At the end of the day, healthy, breathing baby is the goal! But I started to worry. I had been cleared by my doctor for my medication, and I was taking every precaution. But still..
First Trimester and my first seizure
We were apparently quite lucky with my trimester- only one seizure! Anyone without epilepsy seems to still seem shocked when I mention the frequency of my seizures. But I know I’m talking to someone in the know when they high-five me for only having one.
It led to the next step up in care, something that in subsequent pregnancies we would be doing from much earlier- the high risk pregnancy clinic.
High risk. This is a high risk pregnancy. I had to let that settle for a hot second, even if it did make sense. When we met with our specialist for the first time, she gave us the generic rundown of everything we needed to think about, pregnancy and beyond.
Things like managing triggers because seizures would only become more dangerous as the pregnancy progressed. Things like birthing in a hospital and opting for an epidural. Things like bringing baby home and not feeding, bathing, changing or carrying him down stairs when I was alone.
It was helpful. It was necessary. It was overwhelming to hear.
The High Risk Clinic
AKA Our Home Away From Home
With my first seizure at around 12/13 weeks, we started seeing the high risk clinic at around 14 weeks. We were told that we would be scanned every two weeks to assess me and check for preterm labour. This would go on until 24 weeks, when baby hits a new growth milestone.
And that’s exactly what happened. Every two weeks, scan (internal and external), then follow up appointment and discussion of the results. The entire process could take between 3-4 hours and we certainly got to know some of the staff pretty well!
While it was great to be able to see our little rainbow every two weeks, it was also a big source of anxiety. Would they find something? Would something be wrong? Would they need to intervene?
At around 20 weeks, I had another seizure. To try and make sure it didn’t happen again, my medication was increased. And then increased again. And then they added another on top. I felt like a zombie, but it seemed to do the trick (so far!)
It was difficult to keep up with work and all the appointments we had. Between our fortnightly scans, we were still meeting with our midwife and any other specialist they needed to send me to.
The Magic Milestone and our Graduation
When we hit 24 weeks, they did the last internal scan to check for preterm labour. Everything looked good, and with baby measuring on target we got to graduate for fortnightly to every four weeks!
It. Felt. Great!
Not only was our baby measuring exactly how he should be, but all the bumps along the way hadn’t seemed to bother him in the slightest. It was such a blessing!
Since then, we have had out 28 week scan and everything is still ticking along as it should. We are scheduled for our 32 week scan, and hopefully will get another four week break in between should everything turn out ok then as well.
This process hasn’t been easy. This is just a very basic outline of what we’ve been through so far, I could go into so much more detail (and will, in posts to come!). There are so many emotions that go along with an IVF pregnancy, let alone a pregnancy with epilepsy. And that deserves its own post by itself!
We are lucky, and grateful that so far this pregnancy is going as well as it can.
If you are currently pregnant and have dealing with epilepsy, I am going to be writing more post going through advice and tips I wish I’d known before getting pregnant. I will also go through our current birth plan as it pertains to my condition. If you want to reach out or there’s a topic you’d like me to cover, please reach out. I’d love to hear from you!
And just remember, you’ve got this!