Forgive me if I’m sticking my nose in, but in your Times column* last weekend you asked ‘can I be a good mother if I suffer from seizures?’ and your words took me back almost sixteen years to when I asked myself the same question. As you say, it is terrifying to know that you could injure your child especially when – as in my case – seizures usually happen out of the blue, with no aura to provide advance warning. I recognised and remembered the fear you describe and I wanted to reassure you that these worries will pass.
You’ve already been given plenty of good advice such as changing your baby on the floor, not bathing them without another person present and even feeding them sitting on the floor and they’re good tips that I incorporated into caring for my son without problems. And I warned friends that, although my fits were few and far between, it could happen. No-one worried about it, they all just took it in their stride as a thing to be aware of. It was more of a cause for comment that my son was bottle-fed (because of passing medication on via breast milk) although that might just be my NCT circle…
But all those sensible precautions didn’t quell the fears that woke me in the middle of the night; that I would sit alone and obsess over; that made me read up as much as I could about the incidence of birth defects caused by anti-convulsant medication. What frightened me was feeling that I was alone because I knew no-one else who’d been through this.
The possibility of birth defects worried me. At that point everyone reassured me that I was taking probably the safest (carbamazepine) but that there was a higher risk of problems. The biggest looming threat was spina bifida and I was offered tests and scans but we decided not to have them. I wouldn’t have had a late termination – although that’s just my personal choice and I judge no-one who makes a different one – and knowing that the baby I was carrying had a problem wasn’t going to be helpful so we just had the first scan for dates and cracked on, deciding that we’d worry about any problems if and when they arose.
The actual process of giving birth was rather alarming too – everyone seemed to be playing it by ear. None of the midwives I dealt with seemed to know much about epilepsy. To be fair, they couldn’t really be expected to given that no two people’s seizure profile or triggers are exactly the same. They’re trained to deal with women who may fit due to eclampsia and that’s it. As you already know, epilepsy isn’t a one-size-fits-all kind of condition. I was told that I mustn’t eat while I was in labour in case I had a fit and had to have an anaesthetic and emergency C-section. I could see their point but I was far more likely to fit if my blood sugar dropped and as I had a 30 hour labour it was a good job that I managed to keep my levels up (if they tell you that, do what I did and have a stash of cartons of Ribena in your bag). Make sure you take your meds on time too – set a timer to remind you.
So, as someone who’s been there, done it and has a healthy teenage son who doesn’t seem at all damaged by the couple of fits he’s witnessed, I have two pieces of advice for you. The first is to arm yourself with as much knowledge as you can. Get a copy of your neurologist’s notes and put them in your hospital bag, know what they say and get him or her to explain anything you’re not sure about. Assume that the staff in the midwifery unit, although well-meaning and with you and your baby’s best interests at heart, will know next to nothing about epilepsy and be prepared to fill them in where you need to. Especially about the need for your medication to be taken on time because as we both know, that’s the best way to avoid a seizure.
The second is to try not to worry about things that might never be a problem. The precautions you need to take when caring for your baby won’t seem so extreme when it happens, they’ll just be things you do differently. The chances are that your meds won’t have caused any problems so if tests reassure you then make sure you get them, if happy ignorance is better for you as it was for me, then push those thoughts away as much as you can.
But to go back to your original question, yes, you can be a brilliant mother if you have epilepsy. You know that in your heart just as you know that some women in perfect health are terrible mothers. Everyone worries before they have their first baby and those of us with epilepsy just have an extra thing to fret about. We have a condition that we have to work around when caring for our children, just as we acquire coping strategies for other aspects of our lives.
With very best wishes and all the reassuring vibes I can possibly muster,
*I can’t find the piece on The Times website, even if the paywall would enable me to link to it so sorry. To summarise, journalist Francesca Steele, who started having seizures a few years ago is pregnant and wondering about the impact of her epilepsy on her baby.
This is National Epilepsy Week and if you’d like to know more about the condition, about how to help someone who is having a seizure or if you’re affected by epilepsy the following sites are great sources of information. Alternatively, if you have a question, leave a comment here and I’ll do my best to help.