When I found out I was pregnant, it was a shock. I believed that, as I was over 35, it could take many months to conceive. To say I was under prepared would be an understatement. But just six weeks later it was all over. I miscarried.

The miscarriage set the tone for the pregnancy that followed. It happened the very next month and frightened me out of my wits. It was a high-risk pregnancy. So of course the thought of losing this baby haunted me for 9 months.

See, I have epilepsy. It’s the “tonic clonic” type where you wake up not knowing who you are. The seizures began when I was 18 and I’ve had less than 10 in my life.

Lack of sleep, hormonal changes, stress– these are the most common seizure triggers. They also take a starring role in pregnancy.  So, here was my choice: stay on medication and hope that it didn’t affect the baby, which was entirely doable. It’s just that anti-seizure medication doubles the ordinary risk of cerebral palsy,  and congenital malformations including cleft palate, heart problems, urinary and genital problems. It also increases the chances of learning difficulties, ADHD and developmental delays.

Alternatively, I could go off the medication. But apart from increasing my chances of a convulsion and thereby depriving my unborn baby of oxygen for up to 2 minutes, (the average length of my seizures). I was also putting myself and my baby at risk of serious injury.

I decided I’d wean myself off the medication for the first trimester. I learned that the foundation of the baby’s brain – the organ most affected by my medication — was formed by 7 weeks. As for what I was going to do after that, I had no idea.

For many women, pregnancy can feel like there’s an intruder in your body. But having a “high risk” one felt as if I was in a haunted house, where every cramp, every bout of light-headedness, every prolonged headache, sent a rush of fear through my entire being. It was akin to hearing a door slowly creak open for no reason.

I saw 3 specialists in my first trimester. Each one gave me a slightly different opinion. The worst came from my old neurologist.
“Is this from the web?” he asked, lowering his glasses. I’d just finished telling him about the latest research into my particular medication.

“Yes. It’s a peer-reviewed, Harvard Medical School study ….  published last year.”

There was a brief moment of silence in which I felt victorious. But that didn’t prevent him from lecturing me. He garnished his mini TED talk with an anecdote about a woman who died after she fell off a balcony during a seizure.

As soon as I arrived home I burst into tears. It was always in the back of my mind, but in that moment I became convinced I had lost that first baby because I didn’t go off the medication. I was terrified the same thing was going to happen again, only this time I’d lose the baby by falling off my balcony. And all because of my stupid, epileptic brain.

“I’m so sorry baby” I said over and over again between sobs. “I’m so sorry baby…”

The 12 week scan skimmed the top off my fear as it revealed that my baby’s brain was ‘normal’ and that all the organs looked to be functioning well. However, if there are serious defects, they aren’t discovered until the 20 week scan. To complete the picture, parents are unable to find out about developmental delays, ADHD, intellectual impairment, etc. until the baby doesn’t meet their milestones. My delightful, optimistic, supportive husband was incredible. He was supportive but never once questioned any decision I made. The only thing he would harp on was my lack of hope! He’d say “the scan is clear, the chances are rare – I think we’re going to be okay.”

As I read those words now I can feel my throat tighten. Partly, I feel sad for the fearful person I was. I ended up finding a fantastic specialist, went back on my meds and my beautiful baby boy was born perfectly healthy. But my eyes glisten too, I suppose, because I’m pregnant again. And, apart from the sweeping excitement I feel for this baby’s arrival next month, I’ve a ton of hormones sloshing around my body so right now? I’d probably cry at anything.