We fight to improve the lives
of everyone affected by epilepsy

 

Nicola

The moment I knew I was pregnant

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!

The first 12 weeks

The days drag by until the first scan. I am convinced there will be something wrong. All I can think is that the risks of major birth malformation is double that for mothers without epilepsy (although still small). However, my neurologist keeps telling me that the risk is still only a couple of per cent and the best thing I can do is to relax.

The other reason for counting the days is that the 12-week point is the magic time the morning sickness is supposed to go away.

Please God! Throwing up outside Waterstones on the way to find a book about how to treat morning sickness is not very dignified. Neither is jumping out of the car in a traffic jam on the south circular. Head down the toilet in the privacy of my own bathroom if I must please…and lots of fennel tea and sympathy.

Tests and scans

The day of the first scan, I’m there outside the hospital, waiting for my boyfriend Gerald to turn up for the scan. Eventually I call him and find out he set his reminder alarm for 11pm not 11am. Luckily there is a delay and he rushes into the ultrasound room just as the monitor is being attached.

This is amazing. With the help of some interpretation from the doctor we can pick out little arms and legs, tummy, head and little heart beating away. Everything looks fine. The relief is overwhelming. From now on, I think I am going to enjoy my pregnancy.

The day of the 20-week scan arrives and we can see our little boy (no question about the gender, Gerald is suitably proud). We have a name for him - Mr Wriggly. Can’t stop kicking and wriggling about, making it hard for the ultrasound doctor to get the measurements and do all the checks. But in the end he gets a clean bill of health. Another sigh of relief and I return home walking on air (although I am definitely feeling heavy).

Now I really am trying to get my act together health wise. Banana milkshakes are the way to go. Every day a banana and half a pint of milk are blended and drank… yum yum yum. I’m not so keen on the sardines Gerald is making me eat, but it’s all in a good cause.

Coping with seizures

Well, morning sickness stopped, but my seizures returned. I prefer morning sickness. Not full tonic-clonic seizures thankfully. What happens is that I can be having a conversation or watching TV and suddenly I will not be able to understand what people are saying. It’s like my brain can’t keep up enough to interpret the sound before it forgets it. It only lasts a few minutes but I feel quite panicky when it happens and I feel weird for a while after.

My neurologist increases my meds and I have to go into hospital – blood tests, more seizures, higher dose, more blood tests, and still the seizures keep coming. It’s impossible to know what the right balance is - as low a dosage as possible to control the seizures, as neither the drugs nor the seizures are exactly ideal for my little one.

Despite the concern about if everything will be OK, I love being pregnant. The only problem is that I am starting to get a tummy, not enough to look pregnant, just enough to look fat. Can’t wait until I am big enough to look properly pregnant! I know I am supposed to eat healthily but maybe just one more cake won’t hurt…? At least I am trying to eat my five fruit and veg a day, drink lots of water, and get plenty of sleep. Anything I can do to make things as good as possible. The little mite has enough to contend with, what with yummy AEDs in with his dinner!

The seizures are still occurring so finally (in my third trimester) my neurologist puts me on Keppra. I know it’s not great to be on two AEDs, but at least the major development [of Mr Wriggly] has been done. It’s mainly just a question of growing now. The Keppra stops the seizures in their tracks; even so we’ve had to make extra room in the cupboard for all the pills…

I am still loving 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?)

Preparing for the birth

I am starting to think about the birth now. No home birth for me! I’m worried that, since stress and tiredness trigger my seizures, I might have one during labour. I talk to the antenatal consultant about a potential elective caesarean but it is dismissed out of hand with little explanation. I leave in tears, determined to get a second opinion.

The appointment for the second opinion is more successful. The doctor carefully explains that the incidence of seizures during labour is virtually unknown. She reassures me that the necessary emergency procedures will be in place should this very unlikely event occur. She also gives me a prescription for some extra medication to take during labour to make it even less likely. So it looks like it’s going to be a vaginal birth… I’m so glad I decided to get a second opinion. It made so much difference to talk it through with a sympathetic professional, even if the decision was the same.

Labour

I think I have wet myself. Definitely liquid has leaked. I know fore-waters are a gush and hind-waters are a trickle. It is coming up to my due date, but how much of a trickle is a trickle? Hmm think I am going to keep quiet about this one, it’s a bit embarrassing…

Five days (after the wet incident) I have a routine appointment. At the end of which I thought I’d better ask the question. “Oh, by the way, I don’t think they have, but maybe it could possibly be possible that potentially my waters might have broken…” And the next thing is that I am not allowed to leave the hospital as they are going to induce me! And I only have my handbag...

The next couple of days are a blur. Waiting for my waters to break (several midwives and a doctor tried to break them with a stick type thing without success, and then more waiting).

Then finally my contractions started. Whoever invented TENS machines should be nominated for sainthood. At 4am - my waters broke properly. This time there is no doubt about it! Then things start to get really painful. Gas and air makes me feel like I am having a pre-tonic-clonic seizure aura, so I stop that pretty quickly.

The consultant takes a look and is concerned about Mr Wriggly’s heartbeat. I might have to have a caesarean after all! I decide to have an epidural straight away. This way if a caesarean is needed, I won’t have to have a general anaesthetic. But all seems to be OK.

The hours pass in a haze of boiled sweets and chatting to the midwife and student nurse. Gerald is asleep in the corner (thanks, luv). Oh yes and contraction after contraction which I can monitor on a little graph thing next to the bed…

Finally, 17 hours later I am told that I might have to have a caesarean after all as Mr Wriggly has wriggled into an unhelpful position. I’m not too impressed by this suggestion. Luckily the little man manages to right himself, but as his heartbeat is dropping, the decision is taken to suck him out with a ventouse. He comes out with two and a half pushes and no tearing. I wonder if next time I can put ‘ventouse’ on my birth plan??

Life as a new mum

Epilepsy has not affected my being a parent. I have gradually reduced my drugs back to my pre-pregnancy dosage and I haven’t had a single seizure.

I made the decision to breastfeed having talked it through with my neurologist. There’s definitely no right answer to that one, but I felt that the benefits of breast feeding outweighed any small risk of the medication being passed on to my baby through my breast milk.

I breast fed through the night until six months when we switched to formula. I still have to get up, as it is impossible to get Gerald to wake up in the night. Once I slept in the spare room to get some decent kip. But was woken up through two doors and half a flight of stairs by Oliver crying, and Gerald was still fast asleep!

I'm not sure if I had ‘pregnancy brain’ as I am so scatty anyway. It's a side-effect of my epilepsy which doesn't help! However, since having Oliver (Mr Wrigley's real name) I think I have got worse (nappy brain). I've left my handbag in a cafe and at the checkout in Tesco twice.

Now I have enlisted the help of all my friends to help me check that I haven't left anything behind. I also have a mnemonic to help me remember to take the most important things when I leave the house. ‘Monkey's phone bill', which means: money, keys, phone, and pills. So far I have not left my baby behind anywhere. But I have heard stories of people (not with epilepsy) who have, which made me feel a bit better!

It’s hard work, sometimes relentless, and very tiring. But at the same time it is completely amazing, brilliant, fabulous, crazy, the best thing in the world.

Final thoughts

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.

Nicola
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