When we went for preconception counselling (in 2004), I was still at the stage of having about 40-50 petit mal seizures a month. I was on a low dose of lamotrigine, given our plans for children.
We were the first couple to be given preconception counselling in our area (for those with epilepsy). To be honest, it showed. We felt like we were at a job interview. There was a panel of six 'experts' on one side of the table. They fired questions at us. Me and my husband sat on the other side of the table, wondering if we should actually be pursuing having children or not.
Very unfortunate phrases were put forward, like ‘your child will be born addicted to your medication, so you'll need to breastfeed’.
It took us three years from the preconception counselling to actually fall pregnant. I'm pleased to say that they learned a lot in that time and became a lot more sensitive in dealing with couples.
The reproduction unit that we ended up dealing with were incredibly supportive. They followed my lead in how I approached my epilepsy. I viewed it as an inconvenience. I wouldn’t let it hold me back in any of my plans. But I acknowledged my limitations, and any likely impact on children we would be lucky enough to have.
Tests and scans
We had numerous ultrasound scans. This included a very early one (six weeks). This was because we'd had reproductive assistance. Anyone going through that is given a six week scan.
Given our earlier loss, the hospital were lovely and gave us a 10 week scan for our sanity - to prove the little bean was still alive and well.
We chose not to have blood tests to show disability or test for Down’s syndrome etc, as it wouldn't have changed the outcome for us. I wouldn't have terminated the pregnancy unless severe spina bifida, for example, had shown at ultrasound and the pregnancy was definitely going to be lost. For these reasons we passed on these tests.
Coping with seizures
No seizures thankfully. I was worried that I'd have one in labour as it was long and I was shattered. This was always a trigger, as was stress! Also I wasn't allowed to eat, given the threat of a caesarean section hanging over us after 24 hours.
Our hospital had tips for a quick labour on the walls (all lies!!) My husband took one of the tips a little too literally. It suggested close eye contact with your partner by way of support. I opened my eyes from a big contraction to find him quite literally in my face. I took off from the bed with the biggest fright.
My labour was 40 hours long and ended with emergency caesarean. (Not sure I'm the best person to quote here!) Sounds horrific but wasn't actually that bad at the time. Gas and air is fabulous stuff and as for the anaesthetist who administered the epidural - love felt for him more than husband at that point.
I've managed to keep on top of my epilepsy since the baby arrived, so it has had no affect whatsoever on our new life as parents. Our advice to other parents with epilepsy is:
Don't let epilepsy rule your life. With sensible precautions there is no reason that you can't enjoy a full and satisfying role as a mummy. Just listen to the advice of those around you and definitely listen to your own instincts - they probably serve you best.