I have a very unpredictable kind of epilepsy, no aura and clonic tonic seizures every couple of months without meds. Thankfully it’s been under control for 8 years now. I am on a lot of meds though.
I got pregnant accidentally, having been with my partner for only 3 months. I hadn’t thought of taking folic acid. I was TERRIFIED.
Spoiler: it’s all worked out well and I’m pregnant again with our second.
Shock, regret, anxiety, slight sense that this could be something very special; it was a lot to handle.
My partner and I were terrified together and we got as much medical advice as possible. We were both worried about the increased risk of birth defects. I take Lamotragine and Keppra.
I found that getting midwives with experience with people with epilepsy was super beneficial. We met with one epilepsy specialist midwife at St Georges Hospital who gave me a fantastic sense of normalcy. Women with epilepsy have babies, we’ll manage the risks, check the bloods and the baby will be born.
I was sad that I had to transfer from St Georges Hospital to the Royal Free in North London. I had decided to move in with my partner and build a new life there. It was very challenging.
I had to hustle a little at the Royal Free to get them to understand the risks and that my medication levels needed to be tested regularly. Unfortunately I didn’t get a consistent midwife as the woman I was assigned to had to go off sick for a few months. My anxiety was pretty much in the driving seat of how I was feeling during this time, which isn’t great as stress is a trigger for me. I asked for counselling support. They had a pregnancy specific counselling service in the hospital which was a game changer.
This is my stand out advice: get the counselling if you’re as churned up as I was.
With that extra support and space to process everything I managed to be very direct with the obstetricians. I wrote a letter to the lead consultant and managed to have her write my birth plan. I knew her signature in the book would make it clear to the delivery team that they were not to overlook any of the detail.
For my mental health I needed a managed birth, I needed to know that I could get an early epidural and that I wouldn’t be so exhausted that it triggered a seizure. Of course, nature wasn’t impressed with this and it was a very long, very well managed delivery.
I won’t sugar coat it, there was nothing magic about it, I needed an episiotomy and due to the timing had to be stitched up without anaesthetic, I needed 2 blood transfusions, my partner fainted, I threw up in the obstetricians face. We had to stay in the hospital for 5 days as our wee one had jaundice. Thankfully we had a private room. I ensured that was in the birth plan too. I knew I was going to need peace and to sleep.
The Royal Free were wonderful. I was so anxious for those first weeks as I was concerned I might have seizures due to the lack of sleep. Wonderfully I didn’t have a glitch. I had had to up my meds during the pregnancy and was very happy to reduce them again afterwards as my head was swimming in AEDs.
One silver lining of taking lamotragine while pregnant and breastfeeding is that in our case our baby did turn out to be a good sleeper. It may have had something to do with the drugs. Post partum was still scary and our brilliant Health Visitor referred us for family counselling. Again this was super helpful in helping us bond as a family and to adjust to this massively different life.
2 years on, expecting again and much much more prepared, I’m hoping for a relaxed and slightly less medical focused pregnancy this time.