Hayley Jacobs - Purple Day 2021

I wanted to write about my experiences of epilepsy and pregnancy to challenge the misconception that women with epilepsy should not or cannot have healthy children or look after them. 

My daughters are 14 and 12 and so while it's not brand new I know lots of women worry about if they can or should have children and I wanted to share my positive experiences with them. I haven't been seizure free so it's not a perfect story but I hope it provides an example to women who are worried about conceiving that it is possible to have healthy children if you have epilepsy , and that through the various different stages of their growth you can be a hands-on mum.

I had my daughters aged 24 and 26, I was unmedicated at the time (through choice, I didn't have to withdraw meds for pregnancy) and I did have myclonic jerks regularly and grand mals maybe a couple of times a year but my main triggers were lack of sleep and alcohol....so getting pregnant obviously removed the alcohol trigger straight away and during pregnancy I guess I did rest more (first time round at least) so again my epilepsy wasn't really an issue. I didn't know at the time (of either pregnancy) but my epilepsy is catamenial so being pregnant was actually doing my body a favour as you produce more progesterone the whole time, (which is a seizure inhibitor)......I didn't actually know this until years later. 

I was very lucky that although I exclusively BF my first daughter my husband did all the night walking and settling, so I literally just fed her and then slept. My coordination is affected by my epilepsy especially when I'm tired so I wouldn't have been able to do it without his support.

My second daughter was born 22 months later. Unfortunately, although again the birth was fine, after my second daughter was about six months old I started having grand mal seizures, once a month on exactly the same night of my cycle. It wasn't explained very well to me then (the link to my cycle was obvious) but I now suspect it was because as I reduced breastfeeding my progesterone levels dropped which were inhibiting my seizures. 

In case anyone is wondering about feeding and epilepsy, I am a firm believer in going with what is right for you. My second daughter was mixed fed, because I knew I couldn't raise a toddler, and breast-feed all night, so I breast-fed her all day, until about 11pm, then handed her over to my husband, she was formula fed during the night and then I resumed feeding again at about 5AM....so I managed to get one decent stretch of sleep. It wasn't perfect, before I saw a neurologist, when we were trying to work out what was going wrong, I fell a few times in the night trying to get to her room but we were ultimately all fine.

With regards to the seizures when she was six months old, I must admit I was lucky, I was referred to a neurologist, who put me on keppra, and they stopped within the same month.....it also got rid of the myclonic jerks which I'd just accepted as part of my life for so long. I did have to work hard, raising two children under 3 with no driving license for 18 months (I walked A LOT) it wasn't easy but I did manage and remained seizure free for ten years.

Now I'd like to fast forward, I know my post is about having children and obviously ten years later I was 36 and my children were 10 and 12 but I want to include this bit because I strongly believe it's another positive example of why having children when you have epilepsy can be a hugely positive thing. The short story is, my epilepsy mutated and my meds stopped working. I had two years of tests and med changes and uncertainty and through this time my children were my absolute rocks. They weren't quite relegated to the roles of child carers as I was functional some of the time BUT they took on so much with no warning.....they learned to cook, and I mean cook properly; between 5 and 6pm wasn't a great time for me and so I only had to ask and after a full day of school they would cook us all dinner. They had to go immediately from being ferried around to so many activities to losing some of them or having to walk or get the bus to others, and they really didn't moan a lot considering the amount of change which took place. They visited me in hospital and must've been so scared and baffled and they just took it all in their stride. 

I want people to know about this bit because I know lots of people worry about the impact of their epilepsy on their children once they're born....my answer would be "don't let it be a reason to put you off if you're medically safe to conceive".....sure you might need extra support but children are resilient, resourceful and take things at face value....if they see you having a seizure, explain what it is and how they can help in the future. Don't let it become an unspoken stigma in your own home. 

The last thing I want to mention is I guess a lot of people worry about whether to have children because they don't want to pass their epilepsy on to them. Again, it's personal preference and I can understand in some circumstances that knowing your epilepsy is hereditary may sway your decision BUT if there is no guarantee my personal opinion would be, don't let it be the reason you choose not to have children if you want to for every other reason. My own girls have about a 5-8% chance of inheriting my epilepsy, and it bothers me sometimes, but at the same time, if it does happen, then we will deal with it and support them when we need to deal with it, I don't spend every minute looking for signs.

Sorry this is lengthy, to conclude I've covered 3 issues which are all based on MY story, I know every person living with epilepsy lives a different life, but I hope me talking about my pregnancies and births, how my children have helped me with my epilepsy now they are older and how I mentally process the idea that one or both of them might've inherited my epilepsy will help someone and address some generalisations and misconceptions.

Hayley Jacobs - Purple Day 2021
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