We exist to improve the lives
of everyone affected by epilepsy

From one mum to another- our advice for you

They’ve shared their fears, laughter and excitement throughout their pregnancies. Our mums really hope that these experiences help you now. But before our mums leave you, they wanted to tell you:

Don’t let epilepsy rule your life

Jennifer: 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.

Put risks into perspective

Clair: I do worry about having a seizure while being alone with Riley. I am very lucky as my parents have bought me a wrist epilepsy alarm. It will ring my mum’s mobile if I have a tonic-clonic seizure. It has made me feel more confident and makes sure Riley is as safe as possible.

I always carry Riley up and down the stairs strapped into her car seat. I wasn’t planning to use a baby carrier as I could fall on her if I had a seizure. However, often Riley won’t settle unless in my arms. This put her at risk of me dropping her if I had a seizure. From a practical mum point- of-view, I couldn’t get much housework done. She loves being in her carrier helping me do the housework. This means a lot less screaming so less stress for me. It’s a case of weighing up the risks against the benefits!

Another adaption I have had done is a dead brake put onto my pram. They don’t make prams with these brakes but a charity called re-map made them specifically for the pram we chose which was amazing. Lots of people have actually said it is easier to use than having to faff about with the normal brakes on most prams. 

Not being able to drive can be very isolating, I found when I had a Riley it was particularly hard. On a lovely sunny day you can get out the house and go for a walk. When it is cold and raining, being stuck in the house all day, I found really hard. When you have a baby you always get lots of people wanting to visit. I remember in my antenatal classes the midwife saying “you probably won’t want to have visitors to begin with”. Well I definitely used them to my advantage. I took up every offer of visitors, lifts to places, cake! As soon as I could I found local baby classes. It helped me meet new mums and the sensory group I attended gave me lots of ideas to keep us amused on a rainy day. I am also very lucky that my family and friends are very supportive.

Try and enjoy being pregnant

Rebecca: Get as much advice as you can before you are pregnant and in the early days so that you feel prepared. Sometimes you need to be a bit forceful with medical professionals to get what you need. Then try to enjoy the experience of being pregnant as much as you can, because it goes really quickly.

The housework CAN wait!

Ingrid: Sleep when the baby sleeps – the housework can wait. This is especially important in those first few weeks when your baby thinks night time is wide awake time.

Have lots of snacks and drinks around (or someone to get them for you) if you’re breastfeeding. You’ll be sitting around feeding your little one for quite a while in the early days.

The secret to my success – walking everywhere!

Nicola: I couldn’t drive after the birth of Oliver because of my epilepsy. But that might have been a good thing, as walking everywhere definitely helped get rid of some of the baby fat. It’s also exercise that you can do with your baby and is gentle enough to your body, which is recovering from nine months of hard work.

Motherhood is a huge change- with or without epilepsy

Clair: Lastly the everlasting bond people talk about doesn’t always occur straight away. I loved Riley so much and wanted to provide for her. I remember feeling bad for feeling relieved, when the midwife came and took her for a bit, on our first night. I was exhausted. The bond is built over the first few weeks. When she gave her first proper cheesy grin I knew I’d do anything for her. Just don’t feel bad if the feeling isn’t there straight away, it will come. Motherhood is a huge change, it takes time to get used to and time to get to know each other, with or without epilepsy. 

Preparation is the key

Catherine: Before your pregnancy discuss the latest data from the Pregnancy Register with your epilepsy specialist. Also ask your epilepsy consultant about the services available to women with epilepsy in pregnancy at the hospitals in your area. And finally, ask to be referred for preconception counselling, to discuss all your opinions.

Once you’re pregnant, you can ask to be referred to a specialist obstetrician who knows about your medication and pregnant women with epilepsy. If you are at higher risk of having a baby with malformations, ask for more frequent monitoring scans (including a 4D scan). 

You can also give information to your midwives about epilepsy and pregnancy (Epilepsy Action can help).

Mums are a greta source of support

Emma H: I would urge any new mum to attend their local parent and children groups. I attended lots of these groups with Megan, and now with Megan and Chloe. Through the groups I built up an amazing network of friends, most of whom are now also on their second babies. The support from them was invaluable.

Honestly, there is nothing better than sitting around with others (who have also had a rubbish night’s sleep) just relaxing. Much better than sitting at home, thinking you are the only one feeling that terrible!  

 

"Real nappies aren’t as scary as they sound. My hubby was sceptical at first, but is a real advocate for them now." Jude (mum of two)

"Don’t be afraid to ask for help off friends and family…it’s not a sign of not coping." Sarah (mum of one)

"Always keep a small plastic pot of breadsticks, rice cakes, raisins etc in your bag for emergency nibbles or tantrum distractions." Joanne (mum of two)



Comments: read the 1 comments or add yours

Comments

Thanks so much to all the mums who shared their stories in the pregnancy diaries. They have been the biggest reassurance for me as I start to think about families.This is really invaluable information and I'm so glad that you got to share the joys and the normal pregnancy stories as opposed to reams of things going wrong and scary stats.

Submitted by Sarah on