Most people dream of the moment they find out they are expecting their first baby… getting that positive test, feeling excited about bringing a new life into the world, a mini me. Your nervous too, will I make a good mum? Then you get that moment when you tell your partner and you both share that joy together.
Well that isn’t exactly how it happened for us. We had talked about starting a family at hospital appointments for a while and we were in the right place for it. I was on lamotrigine, one of the safest epilepsy medications to take in pregnancy, and I was taking 5mg of folic acid. My epilepsy wasn’t completely out of control but it definitely wasn’t in control either. I was having about one tonic-clonic seizure a year and small clusters of seizures every few months. But I was also 27 and had waited 8 years to gain complete seizure control without success… it might never happen and having children was something I didn’t want to miss out on.
So when I woke up on the floor at work surrounded by doctors and nurses (I work in a rehab unit) and was told I had had a big seizure, disappointment would be an understatement. We were going away on holiday with my family the next week and I was relieved I had time to recover both physically and emotionally from the seizure. We had a lovely week away as a family. As we were packing up to leave Rich commented on how I hadn’t touched the chocolate in the fridge all week. Suddenly I realised I didn’t fancy chocolate… then something my Mum had told me made my heart race… ‘when I was pregnant I just couldn’t face chocolate’… could I be?
I remember my mind working at 100 miles an hour on the way home, so many questions. Could being pregnant have caused the seizure? If I am pregnant is the baby ok, I go so blue during a seizure what harm could I have done to the baby? How am I going to be able to take care of a baby if I could have a seizure like that at any moment?
When I took that pregnancy test I was terrified, there was no excitement, no nervousness. I was just scared. When it showed positive straight away I wish I could say that I was overjoyed but if I am honest all the worries were just too great. I called my epilepsy nurse in London who was amazing and did help to calm me down saying babies are much more resilient than we think to seizures.
Waiting for that 12 week scan was so hard, worrying about whether the seizure, the epilepsy medication will have had any impact on the baby. The relief when that scan came back ‘normal’ was so amazing. Suddenly I felt the excitement kick in, we were having a baby, soon we’d be a family of three.
My pregnancy with Riley from that point was pretty straight forward. I didn’t have anymore tonic-clonic seizures just the odd focal seizure but no more than I was having prior to getting pregnant. Looking back now I realise I didn’t really get a chance to enjoy my pregnancy. I had so many hospital appointments, I saw my epilepsy specialist in London, obstetric consultants and registrars at our local hospital as well as community midwives. I also saw anaesthetists, had bloods taken, extra scans and health visitors. I agreed with everything they said as I thought that was the safest thing to do, to cover all bases when it came to the risks of epilepsy in pregnancy.
When it came to my birth plan I didn’t really feel I had much choice. I was considered high risk as most women with epilepsy are, the local hospital registrars were pretty daunted by me saying things like ‘we don’t see many women like you’. So I wrote my birth plan feeling like I was a huge risk. The plan was:
- to take Clobazam throughout labour to reduce the risk of seizures
- get to hospital early so that my pain could be controlled with an epidural
- put an IV in so medication could be easily given if I had a seizure
- stay in the hospital for a few days where I can recover
It seemed like a solid plan, but there is a reason why they say most people throw their birth plans out the window during labour. I wish I had done with mine.
The weeks leading up to my due date were a blur. My grandad died and I was so busy helping plan his funeral. The day after the funeral was the first time I sat down and relaxed.
By 6pm I could feel twinges I was pretty sure were contractions and by the early hours of the morning I didn’t feel I was in control of the pain and so we headed to the hospital. When we arrived the contractions eased and I was told to go home and wait, they said I probably wouldn’t be in full labour until much later that day.
The contractions started again as soon as we got home and after an hour I wasn’t coping and we rang the hospital. They told me to eat some toast and then come back in. When we got back to the hospital the examined me and I was 9cm dilated. Suddenly everyone panicked, my waters hadn’t broken so they decided they could get an epidural in, it took them over an hour and 10 attempts because my contractions were so strong. The epidural along with the clobazam made my labour slow.
We waited and waited, I was exhausted and by the afternoon both the baby and myself were starting to show signs of distress so they decided to try a forceps delivery and waited for theatre. Theatre didn’t become free for another hour or so by which point things were getting quite desperate. They suddenly rushed me to theatre but forgot about Rich.
In theatre they managed to deliver Riley with forceps but it was all quite traumatic, and didn’t get better with the period after where Riley was rushed off to be checked and I was in a lot of pain. It wasn’t the dream delivery and to be honest the whole thing is a blur, possible due to the clobazam, possibly it’s just my minds way of coping but either way nothing went to plan.
Eventually we were taken to the ward, my medication was reduced to my pre-pregnancy level by the hospital neurologist which looking back was a huge risk, luckily I didn’t have a seizure. But in those three days I was in hospital afterwards Riley was left in bed to feed with me as she wouldn’t settle in her cot, co-sleeping, something that is huge risk when you have epilepsy and something I haven’t done since.
Adjusting to life as a family of 3
So we went home and tried to get on as a family of three. I’m not going to lie, everyone tells you how you fall in love with your baby the moment you see them, they make it seem like all is perfect the second that little bundle of joy is placed in your arms, I didn’t get that. I loved Riley the moment I saw her and I would have done anything to look after her, but those first six months were hard and it took time to adjust to life with a baby.
The sleepless nights, breastfeeding, getting places on the bus with this tiny little person in tow, the worry of seizures… there were all the normal worries of a new parent mixed up with all the worries of epilepsy. It’s no wonder it took us a while to find a new rhythm. But once we had settled into that life I can’t imagine life without her, she made life mean more and I feel so blessed to be a mummy.