These diaries were written in 2012 by mums with epilepsy. Lots of mums-to-be have found them really helpful and reassuring.
For up-to-date information about epilepsy and having a baby, go to Epilepsy Action's advice and information pages.
Our diary writers and their top tips for you.
Rebecca gave birth to her first child, son Maximus in April 2012. Rebecca’s advice for mums-to-be, is to ask for advise specific to you and your situation.
“Get as much advice as you can before you become 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.
“Try to enjoy the experience of being pregnant as much as you can, because it goes really quickly."
Clair and husband Rich are parents to Queen’s Jubilee baby, Riley Elizabeth. Clair’s tip for new mums is something she wishes someone else had been honest enough to share with her. “The everlasting bond people talk about doesn’t usually occur straight away. I loved Riley so much and wanted to provide for her. But I remember feeling so bad for being relieved, when the midwife came and took Riley for a bit. I was exhausted.
“The bond is built over the first few weeks. When she gave me 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”.
Faye and her husband Ben are expecting their first child (a daughter) in February 2013. Faye has had night-time tonic-clonic seizures since she was 11. Typically in the very early morning. Faye’s tip is to seek help with planning a pregnancy sooner rather than later. “I had assumed a six month lead time in trying to get pregnant. [Six months between seeking advice and then actually start trying for a baby.] In the end it was closer to twelve months.”
Nicola lives in London with Gerald and their beautiful children Oliver and Eleanor. Nicola is one of our original diary writers from 2008. Nicola’s pregnancy tip is to look on the bright side and stay happy and positive. “I couldn’t drive after the birth of Oliver, because of my epilepsy. But that might have been a good thing. Walking everywhere definitely helped get rid of some of the baby fat. It’s also exercise that you can do with your baby. It is also gentle enough to your body, which is recovering from nine months of hard work”.
Jennifer and her husband have two sons. Jennifer is another of our original writers from 2008. Jennifer advises: “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”.
Ingrid is the final of our three writers from 2008. She lives with her daughter and husband in the north-west. Her number one tip for mums: “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”.
Emma gave birth to twins in June 2011, creating a happy family of seven. Emma unexpectedly developed epilepsy as she explains.
“In 2010 I had brain surgery. This was actually ‘foramen magnum decompression surgery’ for a chiari 1 malformation (a bit of a mouthful).
“A short while after the surgery I was diagnosed with epilepsy. I experience tonic-clonic and absence seizures. It's not a side-effect my neurosurgeon had ever seen happen before, so we were all taken by surprise".
Catherine and husband Darren have two children Matthew and Charlotte. Matthew was diagnosed with anti-convulsant syndrome, when he was only 16 months old. This has caused complex health and learning difficulties.
Matthew is treasured by Catherine, Darren and Charlotte. Her top tip is: “Do your research before you become pregnant. Looking back, we were quite naïve when planning our first child. If we’d known what was to come over the next few years, we probably would never have believed it. However, now we know so much more. I know whatever happens we will face it as a family. We will find a way of making it work”.
Emma H is mum to Megan and Chloe and has had epilepsy since childhood. Emma takes sodium valporate and lamotrigine and her epilepsy is well controlled.
“I was diagnosed with temporal lobe epilepsy when I was seven years old. My parents never made an issue out of it and I was always allowed to do things that I was safe to do. Until the age of 21, I was a competitive swimmer. Dispelling the common misconception that people with epilepsy are unable to swim (a problem I have encountered many times, even now)!
“My advice – live your life! I have always been taught that my epilepsy should not dominate my life and it hasn’t. I have had a few ‘hiccups’ along the way, when consultants are fiddling around with my medication or if my triggers have gotten the better of me. Lack of sleep and stress during my first year at university caused me to have many tonic clonic seizures. This obviously set me back a few months. But the university were very good and allowed me to continue with my degree, as a physiotherapist, once I was over the worst of it.
“I am happy to be where I am today. I would like to think this diary has reassured and given confidence to many ladies with epilepsy to start a family. I understand everyone’s condition is different and not all women can be as lucky as me. But with the right support, guidance and knowledge you can be just as good a mum as anyone without epilepsy.”
Sarah was diagnosed when she was 18 years old. She experiences focal seizures presenting as absences. Before a seizure occurs, Sarah experiences an aura (visual or audio warning).
The diagnosis of epilepsy came as a complete shock, as Sarah explains:
“I never thought for a moment my symptoms would mean epilepsy, as the seizures were mostly complex partial, and showing themselves as absences.
“At First I didn't believe my symptoms to be epilepsy. My seizures were absences, and although I felt tired and emotionally volatile (every day!), I did not ever see myself have a seizure.”
Sarah talks about the similarities and differences in her pregnancy with Louie (now aged three) and Hana (now aged nine months).
|My baby love: Hearing baby’s heart beat at every check-up. Midwives are definitely better at giving you time to listen to it than most doctors! Clair|
|My baby love: Being pregnant. It’s especially exciting when he starts to show his presence visibly with limbs sticking out and disappearing again. There’s a person in there! (Or is it an alien?) Nicola|