When you are pregnant you want to do everything you can to protect your unborn baby. You watch what you eat and drink, giving up things you loved before just in case it impacts on the life you are growing inside you. But for those of us who have no choice but to take medication during pregnancy it is a huge weight on our mind throughout those 9 months and beyond.
Pregnancy and the early days
That first scan is so scary, but then so is every scan after that, what if they find something, what if the drugs have affected the baby, I think it’s the only time in life where you want your child to be completely average and I felt blessed that both mine were.
Then they are born and the relief that both my babies we’re ok was huge. The first few days with Benji were a worry, he didn’t poo straight away and the doctor was questioning whether his digestive tract had developed correctly. We heard her making irate phone calls to the consultant and the whole time I was sat there thinking maybe this is because I took Keppra in pregnancy. It turns out he is fine but the worry at the time was very real.
So once they are home I though the guilt would pass, we have two healthy children we could get on with life.
Small problems start to show
But then we noticed Riley’s eyes would sometimes roll outwards, to begin with I thought I was imagining it but by the time she was two others started to notice it too. It turns out she has a divergent squint, she controls it really well and I am so proud of how grown up she is when she goes to the hospital and has her eyes tested. But in the back of my mind I question why does she have this problem, could it be the lamotrigine I took in pregnancy? She may need surgery in the future, it’s not a problem that is likely to go away and I worry that other children will notice her eyes and bully her for it.
Then there are her little toes, they are slightly deformed, they are slightly high on her foot and the nails are small and impossible to cut. I have mentioned it to the doctor and we were told they may well bother her when she gets older and require a small surgery to correct them. But a few weeks ago Riley asked me why her toes are funny, it was because Benji’s are normal so when I cut their nails together I can do his really quickly but with hers I have to get clippers out and try to pull the nail back to cut them and it hurts her. She asked why her nails were so hard to cut when Benji’s toes were so much smaller and yet his nails were easy to cut…
Finally there is potty training, this has been a complete nightmare, the hardest part of parenting so far for us… we have tried everything. We have used so many different reward charts, we have got her to clean up the mess, we have used a wobble watch to remind her to use the toilet, we have given her big drinks to try to stretch her bladder and still we have regular accidents.
Don’t get me wrong things are improving, we definitely have less accidents now than 18 months ago but we struggle to go more than 2-3 days without an accident and some days we will have loads. The health visitors are all out of ideas, nursery are all out of ideas and for a child so bright and articulate it seems strange she can’t grasp a simple concept of using the toilet.
At first it was really hard seeing all her friends just getting it. But it has gone on for so long now I have learnt to accept it but it is still hard when there are children so much younger than Riley who are successfully potty trained.
There is also so little support out there when you are struggling. I had to break down in floods of tears to the health visitor to even see them. We had a scan done and it showed her kidneys are normal but it would appear her bladder is small. We don’t know why yet but we have finally got a referral to the paediatric urologist, it has taken a long time and a lot of heart ache to get there. And now I wonder could it be the medication I took in pregnancy which is behind this problem.
Could it be the medication?
The truth is we will probably never know whether these problems are caused by the lamotrigine because while data is collected on major birth defects at birth, small problems like this are not recorded anywhere and without the large data sets you can never tell whether it’s just unlucky that she has these problems or whether it’s due to the drugs.
Of course these little problems wouldn’t have stopped me having a baby because I was taking epilepsy drugs, I wouldn’t change Riley for the world. I suppose it’s more the guilt that is linked with them, I blame myself for Riley’s problems. Because no one can tell me either way whether it’s the drugs I blame myself for the decisions I made, like to up my lamotrigine dose during pregnancy because my levels dropped.
It’s also a funny situation because I feel like because Riley and Benji were exposed to different drugs during my pregnancy and Benji doesn’t seem to have these problems that if I had taken the plunge and tried Keppra sooner Riley might not have these problems. I chose not to try Keppra sooner because I was worried about it effecting my mood because of all the things I had read about it so I feel guilty for that.
What needs to change?
I suppose what I am trying to say is that more needs to be done to record the long term effects of medication on children exposed to it in uterus. Drug companies need to take more responsibility for their medications so women can have all the facts available to them. I wouldn’t have chosen not to have children because of these small problems but now I feel guilty for every problem my children have, it would be good to know which are linked to the medications and which aren’t and just to receive better support and understanding from health professionals.
There is so much information on the risks of smoking and alcohol in pregnancy and at the end of the day there is no need for women to smoke and drink in pregnancy (and the risks seem pretty obvious) yet there is so much data on the risks. But for medications that many women have no choice but to risk in pregnancy the data just isn’t being collected and that seems wrong somehow.