I’m lying on the floor next to my one year old watching her flail her chunky arms. Harper doesn’t seem like she’s a year old. It feels like weeks rather than months since she was born but that’s not what I mean, she’s not like the other one year olds I know. She’s lying on her back blowing raspberries, quite content and undisturbed by our 3 year old son zooming around us chatting about something, wielding a triceratops and a comb. She carefully raises her right hand to her face, doesn’t look at it, just holds it there then drops it back down. She does it again. She squirms a little and rolls to her side and back. Then suddenly both arms reach up and forward, her torso jolts slightly and after only a second or so she relaxes again, looks at me, and smiles. These movements would seem fairly normal for a young baby, and maybe even for a one year old playing on the floor, but in her case this was a seizure. Harper has epilepsy and what I have just described is a symptom of the condition – the hand movement – and a brief seizure. Her episodes look just like the Moro reflex, which normally disappears around 6 months. I’ve always loved the startle reflex in babies, their little arms sparking out when they get a shock; only there was no shock here, no discernable trigger. If you didn’t know what you were looking at you would have no idea and, until 4 weeks ago, we didn’t either.
We’re pretty laid back parents – about the small stuff anyway – second time around we just roll with the punches: sleep regressions, teething, injections, first cold… No big deal. Going from one to two, as people say, was a big leap, a lot to juggle. My husband works away a lot but he’s an amazing dad and we make a good team. When Harper was born she was easy, I mean in the sense that babies are bloody hard work but once you’ve dealt with an articulate, energetic and challenging toddler; a pooping, gurgling, sleeping, feeding machine is easy. I had the breastfeeding thing down and wasn’t freaking out about getting her into a routine. I was wiser now, well versed and knowledgeable about there being no such thing as a ‘rod for my own back’ and ‘clingy’ babies were just, well, babies. Maybe that’s why I didn’t worry when she continued to be easy.
After 3 years as a breastfeeding peer supporter, I’m the one to whom other mamas turn to for calming advice about feeding, sleeping, developmental leaps… So when I started to notice that our daughter wasn’t developing as quickly as other babies, I tried to heed my own advice – they all progress at different rates, each baby is an individual, all in their own time. But it’s hard not to see the now glaringly obvious differences between our beautiful babe lying placidly on her back, staring into space, and her mate (one month her junior) pulling herself up on chairs, yanking things off tables and, babbling madly, speed crawling for the most dangerous item in the room.
When we first noticed the hand movements we didn’t think they were anything odd, she was still young enough that her movements were a little erratic. I even joked when a friend mentioned it, laughing about my little sailor baby: “ahoy there!” When they became more frequent I took her to the GP and we discussed the fact that she still wasn’t sitting up, she had no strength in her arms to push herself up, her grasp was loose and a couple of other things. As the weeks passed waiting for a referral to a pediatrician I became more worried as there was little change in her development.
Things came to a head just before she turned one. Within the space of two days we saw our health visitor, had a very serendipitous conversation with a wonderful mama friend who suspected that it could be epilepsy (her daughter had similar symptoms), then I spent 12 hours in the hospital having her suspicions confirmed. I was shocked. How could I have missed something like this? How could I have not suspected that something more serious was going on? I don’t want to beat myself up though; epilepsy is a hard thing to diagnose, especially in infants. It can manifest itself in a variety of ways and has a range of severity from repeated eye twitches to full blown fits. Would I have sought help sooner if she was my first? I don’t know.
I was alone when I received the results from the first tests. Harper was asleep in the sling, my husband was rushing back from a business trip, my friend who had taken us to the hospital had to get back to her own baby.
I was simultaneously relieved that we finally had an answer and terrified about what this meant for her future. The moments that followed were a rollercoaster of emotions, I knew that we were lucky to have caught it but the specialist could only tell me the worst and best case scenarios, nothing concrete. My mind was racing.
Suddenly it all made sense, the fact that she has been jolting awake in my arms as I rock her after feeding her to sleep, she was having repeated seizures and I had no idea, getting frustrated at yet another failed nap.
Life, currently, is like perpetually having a toddler and a 7 month old: it’s exhausting, both physically and emotionally and the rewards are not what they should be. I feel awful for feeling like this but this age is normally so lovely with little personalities emerging, the beginnings of communication and discovery of the world… I find it hard seeing her peers racing towards the next milestone. If anything I’ve noticed a regression: retrospectively I can see that the gradual increase in her seizures has caused her to be less engaged, less reactive to smiling faces, less my little girl. There are still moments though, when the electrical currents in her brain aren’t disturbing her focus, when she reacts to my son singing to her, or grins hugely as her Daddy arrives home and that’s what I hold on to.
The care we have received has been amazing: we’ve seen paediatricians, consultants, had blood tests, had an initial EEG and a follow-up and we now have referrals to a whole host of specialists. She was started on medication immediately and, if it works, she could be seizure free very soon and start developing quickly, or she could have long-term issues, maybe some learning difficulties for the rest of her life. We don’t know, and no one, no amount of specialists, can tell us that. Only time will tell. In the meantime I am eternally grateful for our wonderful NHS, my incredibly supportive ‘village’ and the fact that this is a manageable condition. Other than the epilepsy my baby is healthy and content, blowing raspberries on the floor and I’m thankful for that.
mum and breastfeeding peer supporter
If you would like more information about epilepsy in newborns got to: epilepsyaction.org.uk/info/newborn