Becoming a Mom With Epilepsy
Last updated: June 2023
I have been a writer for EpilepsyDisease.com for a couple of months, but endless hospital admissions kept me too busy to start writing. I'm currently pregnant and being very careful with any health issues that arise. Now that I am home and stable I wondered what my first article should be.
Epilepsy is so broad, and sometimes I feel like I am on a rollercoaster. So many suffer from this disease, so what really can I write about that will make any difference than what we all know and experience so often?
But then it happened. Someone spoke words to me that no person should ever have to hear: "You must be crazy or brave to want to have children with all the health issues you have." The words of a post-op nurse to me.
When those words left her mouth I had no idea how to respond. I had just had surgery – a procedure that most people are put to sleep for but they kept me awake and only used a local numbing anesthetic. They chose to do the procedure this way because of my seizures and the fact that I am 18 weeks pregnant with my rainbow baby.
Complications are even scarier when pregnant
Now going into this, even though I was sedated, they made sure anesthesia was close by because my doctor was prepared for the possibility of me having a seizure. And as epilepsy does, it reared its ugly head and I went into cluster seizures in the middle of the procedure, requiring rescue medications, talk of being put on a ventilator, and almost resulting in an ICU admission.
Thankfully, I was able to avoid a ventilator and an ICU admission. When they brought me out to post-op is when I met the nurse who would question my desire to be a mother based on the momentary interaction she had with me.
Epilepsy does not define me as a mom
Her questioning me hurt. But what made it sting worse than just words from a stranger is that I, like most people who live with chronic illnesses, already question daily my own desire to be a mother and whether I would be suitable to care for a child.
Let me tell you this! Your chronic illness does not determine whether or not you will be or are a fit parent! I can list a thousand other things that could count as criteria for loving your children, your ability to provide a safe home, and many more. But your illness is never and should never be on that list.
Is it probably going to be difficult, but if being a parent is a goal of yours, you cannot let your epilepsy hold you back. If and when you decide that parenthood is right for you there are so many steps you can take to be sure that you are doing what is best for you and your unborn child.
Talking to the doctor about pregnancy with epilepsy
Before I became pregnant, I discussed it with my neurologist. These were a few pointers they brought up:
- Medication:Not all anti-seizure medications are safe for pregnancy so talk with your neuro team and know which ones you can be on and which you may need to come off of.
- Folic acid: My neurology team put me on folic acid the moment I brought up having a baby because seizure meds can sometimes prevent your body from producing enough folic acid naturally. So it is common to go on the supplement before and during pregnancy.
- Metabolizing medication: Pregnancy actually causes your body to metabolize medications differently so working closely with your neurologist on your treatment plan is super important.
- Hormones: We all know all too well that hormones can affect seizures. And when pregnant, hormones are all over the place, so communication about how you're feeling is important!
Being a mom with epilepsy
As a person with epilepsy, I have to take extra precautions during pregnancy and will have even more precautions set up for when my baby boy is born. I do not know how this journey is going to go. I can tell you so far it has been hard, I have had to make a lot of sacrifices, and I will have to make many more.
I have spent more time in the hospital than I have in my own home. But oh how this will all be worth it when I can hold my little one. Parenthood is never easy, there is no book to cover what we will experience, but there are others who have been there and done that!
Never let anyone tell you that you will not be a good parent due to your health and most importantly, never allow your own mind to convince you that you will not be or are not good enough to be a parent. Just as it is for everyone else, there will be a learning curve! You will need a support system, but doesn't everyone?
We conquer epilepsy every day, one day at a time. And parenthood will be the same way! One step at a time...
Since being diagnosed with epilepsy, has your memory been impacted?