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.
I remember sitting on my bed with three ‘vital pieces of evidence’. Finding out I was pregnant was a real mix of emotions; joy mixed with a feeling of ‘oh no what have we done’. But, would having epilepsy have changed this moment and my feelings? I don’t have epilepsy, so I asked our mums instead.
First time lucky
Nicola: Surely this can’t be right!! What were the instructions again? Does that blue line really mean…?
I was expecting it to take at least a year to get pregnant. First time lucky is leaving me feeling very scared, excited and completely unprepared. I can’t quite believe it is real now. We really are going to have a baby!
But what about the epilepsy?
Rebecca: We were still in the process of thinking about whether to have a baby or not, when I discovered I was pregnant! It might have been fate, but whatever it was, it was happening and the decision had been taken out of our hands!
When I found out I was pregnant, I felt fairly prepared in a practical sense due to the research I'd done, but I still felt really frightened. Will my epilepsy get worse during pregnancy? What about the birth? What if the medication harms the baby? Will I have breakthrough seizures? Will I be able to look after my baby? How will I cope with the sleep deprivation?
I also had all the concerns that people without epilepsy have too. Where we would live? How would we manage for money? What impact is a baby going to have on our relationship? Although I had all of these feelings I knew it would be ok. We would deal with one thing at a time and we'd find a way to sort all of these things out.
Ring the nurse
Clair: When I was four weeks pregnant I had a tonic-clonic seizure (at that point I didn’t realise I was pregnant). I hadn’t had a major seizure in a year, so it was a blow and my medication was increased.
It was a week or so later I found out I was pregnant. I was so scared. On top of the risk of birth malformations from my epilepsy medication, what could the seizure have done to my baby? I rang my epilepsy nurse who reassured me the chance of it affecting the baby is low. It is if you go into status epilepticus that the baby is more at risk.
Faye: In November 2011 I became pregnant, but had a miscarriage. It all happened quite quickly, so nothing related to my epilepsy really came up. And I knew it was quite normal for someone my age, so I wasn't worried.
I became pregnant again in May 2012, and will hopefully have a daughter in February 2013. It was exciting to become pregnant again. But having had a miscarriage, we were cautious about thinking about it too much, before the first scan.
Ingrid: I felt in shock after I’d done the pregnancy test. We had been trying for a baby for three months, but I wasn’t expecting the result to be positive. I assumed my period was late due to the stress of getting married in four days.
Thank goodness I can't be pregnant.....
Emma: A short while after having brain 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. I was immediately put on different epilepsy medications. Eventually these were changed to less 'dangerous' ones. Trouble was, I was allergic to lamotrigine, so I was then put on another epilepsy medicine.
Come October, I wasn't well, and thought to myself ‘if I didn't know better, I'd say I was pregnant’. However I was using the progesterone implant, so I knew that I couldn’t be pregnant. Mum to three kids, I had just had brain surgery and recently been diagnosed with epilepsy. A baby was the last thing on our mind.
Three weeks later, and no improvement I bought yet another (but more expensive) pregnancy test. For the third time, I took a pregnancy test, but this time I discovered that I WAS pregnant. In shock - from finding out that my epilepsy medicine could interact with my contraceptive implant - and that I WAS pregnant - I made an urgent appointment with my GP.
“Some epilepsy medicines can reduce the effectiveness of contraception, and as Emma found out this can lead to an unplanned pregnancy.” Nicole (Editor)
Really excited to be pregnant – but the worries are still lurking
Emma H: When I became pregnant with my first daughter my husband and I were obviously very excited. There was however, the initial worry of how my epilepsy would cope during the pregnancy, birth and early parenthood. We were also concerned about the risks of malformations to the baby – I was taking two epilepsy medicines.
A baby is such a long way off
Sarah: I had to lie down! My husband had gone to work and would not be back until late, and I didn’t want to tell him I was pregnant while he was at work.
It did not feel like it was really happening to me, but at the same time I wanted to find out if all would be okay. I would be lying if I didn’t admit that I was worried for a moment. When I saw my ESN in the summer I told her that I was not planning a pregnancy for some time. So I had very little information on how epilepsy could affect a pregnancy. The lack of information is what I think made me worry.
With my second pregnancy it was different. After my pre-conception counselling, we soon went on a holiday. About five weeks afterwards, I found out I was pregnant. This time was much more exciting; I had all the information I needed and expected to fall pregnant!
Status epilepticus – Note from Beth (epilepsy specialist midwife)
“Status epilepticus is when a seizure or cluster of seizures, continue for thirty minutes or longer. It is a medical emergency, and the person will need urgent treatment to stop the seizure. Thankfully status epilepticus in pregnancy is rare. But it is important that everyone knows when to call an ambulance to a person having a seizure. More advice is available from Epilepsy Action”