I’m an Epileptic: My Journey to Pregnancy In Spite of My Epilepsy

I’ll be the first to say it: planning a pregnancy is not easy.  Our journey of “planning to plan” started three years ago, when I was 22 and my then fiancé, now husband, was 26.  The medicine that I was on for epilepsy had started to falter, and I was having what were known as breakthrough seizures (those which suddenly appear after the epilepsy has been under control).  I mentioned to my doctor that pregnancy was a distant dream for us, and that drastically cut down the options for new medication.  Then it began…the slow process of finding what medication worked, at what dosage, which medications caused side effects, etc.

While changing medications I stayed up some nights, partially due to insomnia caused by one drug that worked for almost a year, reading up on everything about epilepsy and pregnancy.  I had never been known as a planner before.  My husband and I were notoriously late to family gatherings by five, ten, sometimes fifteen minutes because we left the house too late.  However, this was something where I couldn’t afford to let anything slip by my radar.  Scary words filled my screen: neural tube defects, spina bifida, cleft palate, cleft lip.  On more than one night,my husband would come home from work and find me crying in front of the computer.  I felt defeated in the sense that I had odds stacked against me from the beginning and we hadn’t even begun to try to get pregnant yet.  Was this some sort of sign that I wasn’t supposed to have a baby, that I would be a bad mom?  These questions, plus more, kept me up numerous nights.  I was wracked with immeasurable guilt.

In 2012 the medicine I was on had reached its maximum dosage and I was still having tonic clonic (also known as grand mal) seizures.  Since my doctor knew that we wanted to eventually get pregnant, we were trying to remain on a single medicine regimen.  The type of epilepsy I have wouldn’t have benefited from a procedure called a VNS Implant, which is usually offered after three or more medications don’t work anymore.  “There is another drug I’d like to try,” my doctor said.  We sat in her office, my heart heavy.  “It’s a newer drug. The research with pregnant mothers isn’t as high as the other drugs you’ve been on, but what research there is shows almost 100% healthy babies born to mothers who take this during pregnancy.”

I read the information she handed me, knew my options were limited as it was, and decided to start the medicine.  One month seizure-free turned into four, then six.  And then seven, and then ten.  Then eleven.  I felt great.  I started taking prenatal vitamins and an increased dosage of folic acid in the morning with my morning dose of medication.  Eleven months and two weeks seizure-free, I had a sudden tonic clonic at home.  My husband caught me in the bathroom, and I woke up on the floor to the news that I had been almost a year in the clear.

We set up an appointment with my doctor, and I asked her if this meant we couldn’t try for pregnancy.  My blood work looked fine, my medicine levels were high, and there could’ve been another reason for my breakthrough seizure.  “A year seizure-free was your own personal goal for getting pregnant,” she said with a smile.  “You’re healthy, taking prenatals, taking folic acid, and if you’re ready to try for a pregnancy, I’d say you’re good to go.”  We set up a potential plan for the future for when I did become pregnant: monthly blood draws to test my medicine level in case it drops with the increased blood flow.  And I left with the knowledge of knowing I would be labeled a high-risk pregnancy.

We got our positive test two months later, on January 21st, at 3 weeks and 6 days along.  I quickly learned along the way that no matter how much reading I had done before becoming pregnant, nothing could ever prepare me for actually being pregnant.

The first ultrasound- I knew it would be emotional.  I didn’t know that I would be feeling about ten types of emotions.  I was terrified that it would be empty, that there would be twins (a little excitement about that potential), and the immeasurable amount of love that I felt when that little wiggly body showed up on the screen, with little arm and leg nubs starting to grow.  We made that!  An overwhelming sense of protection flowed through me and I knew at that moment that I would do anything to protect that little gummy bear inside of me at any cost, because that was my child.  My little baby.

Constipation hurts- In a way that I can’t describe accurately.  These are the things that don’t make it in the movies about pregnancy.  They never show a woman curled up in legitimate pain, part crippling cramping pain, part paralyzing fear because WHY DOES IT HURT SO BAD, and then going into the ER at 2 in the morning crying, only to be told that it’s constipation.  But, it happens.  Especially if one is on Zofran for the….

Morning sickness? More like every day, all day, all pregnancy-long sickness- I’m sitting here, third trimester along, still taking a Zofran (or two) a day.  I was prepared for throwing up. I tried saltine crackers, ginger capsules, candy and ale, seabands, preggy pops, and the B6/Unisom combo.  I hoped there was medicine to help me keep my seizure medicine down.  As I sat on the toilet (so I didn’t pee myself while throwing up) with a trash can in my lap, crying as I threw up because I took my Zofran too late, I repeated in my head over and over again, “This will end soon.  Second trimester is supposed to be better.  They say it’s better, the sickness will go away!”

The Anatomy Scan (and the emotions)- We didn’t hide it from anyone,..we wanted a girl at first.  My mom passed away when I was 10, and I missed out on all of the typical mother/daughter bonding experiences one has with their mother.  I hoped to have that with my daughter.  As we sat in the dark ultrasound room and I watched my baby bounce around, the tech measured the femur, and the thigh bone.  I saw what was between the legs, and immediately knew who was inside of me.  My little boy, my sweet baby BOY!  In an instant, I silently said goodbye to the memories I had not made with my own mom, and said hello to a lifetime of memories to be made with my son.  Of robots and dinosaurs (our themes had already been picked out for both), of snuggling on the couch and watching He-Man, Thundercats, TMNT, and getting sticky kisses from a sticky little boy who has played outside for too long.  A little boy who is hopefully a miniature version of his father.  My eyes filled with tears as these images flashed through my mind.  Our son. We finally knew who he was.

The never ending fear- At 27 weeks, I started having preterm contractions.  They were confirmed by the monitors, and the doctors said that I wasn’t dilating, but I was most likely going to keep contracting and that it was my new pain level.  Going into Labor and Delivery at that stage in my pregnancy, knowing I was having contractions, and seeing the NICU sign didn’t put me at ease.  I live every day in fear of delivering early. The contractions have all but disappeared now, but it seems that every trimester has it’s own set of fears.  The first trimester was fear of miscarriage.  We didn’t tell a lot of people or go public on social media until 12 weeks.  The second trimester gave me constipation cramps that felt like contractions, and then actual contractions.  I am now in the third trimester, still afraid every day of having a seizure, but now more afraid of what’s to come after he’s here.  Sometimes I’m afraid of how much I love him already, and I haven’t even held him yet.  The ferocious type of love and protectiveness that radiates from within is so breathtaking at times that it frightens me.  I will give my child the world, because he is my world.  I’ve waited so long to meet him, so long to have the chance to meet him.

That is the one thing I couldn’t prepare for, no matter how much I read up.  If there’s any advice I can give to any couples out there who are wanting to plan, or plan to plan in the future, it’s this:  get ready to love with every fiber of your being, like you’ve never imagined possible.  And get ready for the up and down rollercoaster of emotions, both good and bad.  From crying at Peking Buffet to rage nesting (it’s a thing!), the range of emotions runs wide.  The love never ends.

**Special thanks to our Guest Blogger, Heather Pundt, for sharing her story with us today!