My Journey Through Pregnancy with Epilepsy

Motherly instincts can be a funny thing. If it wasn’t for my mum, I am not sure I would be sharing my experiences with you today.

My Diagnosis

I was in my early 20’s when I had my first seizure. My mum was about to leave for work, when she found me slumped in the middle of the floor, blood pouring from my chin after a shower. Mum dressed me, handed me a towel and raced me to hospital. I was not afraid, as I had her by my side. This day plays like a movie in my head, although I only remember certain parts of it. At the hospital, I was sent for a CT and MRI scan, when I learnt that my right front temporal lobe had not formed properly from birth: I had epilepsy.

At the time I was angry and frustrated at the world. My driving licence was taken off me and I went from being a carefree 20-year old to not being able to go out clubbing with my friends. My neurologist advised me to quit my job (shift work), as it may have contributed to my epilepsy. Soon enough, I felt isolated. A lot of people don’t understand epilepsy-they fear that I’m going to have a seizure at any minute. But with epilepsy, each case is different: for me, my seizures always occur in the shower and during my menstrual cycle.

I began seeing a new neurologist after some issues I had with my medication. This neurologist saw me as a person: he was interested in my life goals and who I was. Epilepsy now became something I simply managed instead of something I feared and that was constantly at the forefront of my mind. My new neurologist changed my medication and I have been seizure-free ever since.

This neurologist saw me as a person: he was interested in my life goals and who I was

I know this is not always possible for everyone but having a good support network around you is crucial. For me, my main support network was my husband and family, my neurologist and my GP.

My Pregnancy Journey

I have always wanted to be a mum for as long as I can remember. Now that I had gotten my epilepsy under control, my dream seemed finally in reach. I was terrified of the risks involved, but the desire to be a mum far outweighed those risks. With my team around me, we set out to make my dream a reality.

I had always wanted to be a mum for as long as I can remember. Once I was able to get my epilepsy under control, my dream seemed finally in reach.

We planned for pregnancy straight after our honeymoon. I booked an appointment with my neurologist to discuss my epilepsy medication. We made a few minor changes without any problems.

The main risks with these medications and pregnancy are cleft palate, spina bifida as well as other birth defects. Because of this, a large dose of folic acid is vital when planning for pregnancy. We didn’t know if it would take us 4 months or 4 years to get pregnant but he figured it was better to be prepared, that way if we had any problems lowering the dose of my medication it means we wouldn’t have to do it while I was pregnant. I then booked an appointment with our GP to make sure neither my husband nor I had any fertility issues as I was 32 and he was 42. As it turned out we were successful during my first ovulation period so we got to surprise our GP with the good news.

I booked an appointment with my neurologist to discuss my epilepsy medications, as they can cause cleft palate and other birth defects.

My GP became like my right-hand person, having a good GP that knows your journey and your epilepsy inside and out is invaluable while you are pregnant. My husband and family were such positive support. Whilst we may have been anxious, everybody was so positive. I was never told not to have a baby due to the risks of my epilepsy. My neurologist, GP and The Australian Epilepsy Pregnancy Registry were also a great professional and personal support to me during my pregnancy.

Once I became pregnant my neurologist urged me to sign up for the Epilepsy Pregnancy Registry, which collects data from pregnant mothers with epilepsy. The team looks at things like the effect of epilepsy medication during pregnancy and whether seizures increase or decrease during pregnancy. This is something I urge all mothers to do, as not only is the data crucial but the support I got from the registry was invaluable.

Now that I was pregnant I had so many questions running around in my head…

• What risks were involved? (for mother and for the baby)
• What if I have a seizure during my pregnancy?
• Would I be able to bathe the baby?
• Would my baby be healthy?
• Could I breastfeed?
• What if I had a seizure during the labour?

I asked my neurologist all of these questions in order to get a better idea of what was to come. The last question worried me most: my neurologist said that if I was to have a seizure during labour, I would have a cannula in my arm, be given medication and have an emergency C-Section. I’m not sure that it would have been as simple as that, but at that point, all of my stress just disappeared.

I was lucky enough that I had no seizures during my two pregnancies and I believe it was because my support system around me kept me calm. My second pregnancy we were also lucky enough to fall pregnant with twins- I fell pregnant during my first cycle also. Both pregnancies were natural. I am now the proud mum of a three-year-old boy and 10-month old identical twin girls. I do have high blood pressure and I find if I’m tired that headaches can come on more often and concentration can be a challenge. But overall my epilepsy is well controlled. I have been seizure-free since 2011.