Guest post: “Your safety in pregnancy, or your baby’s safety? Would you be able to make that choice?”

[NicolaDMumsnet]

Imagine the scene. You’re planning to start a family and are faced with two choices. Either you remain on your life-saving medication which could cause physical or neurodevelopmental harm to your baby during pregnancy. Or you switch to a medication which is safer for your baby, but which could endanger your own health.

Pregnancy can be a worrying time for any parent. Will my baby be getting all the right nutrients? Am I aware of all the current high-risk foods that I should be avoiding? Is my baby growing properly?

But for women with epilepsy, that anxiety is amplified by the risks linked to many of the medications prescribed to keep their seizures under control. There are 26 drugs prescribed for epilepsy, but only two of them are thought to be safer in pregnancy.

The obvious solution would, of course, be to transfer all women of childbearing age to the safer drugs. Except that, for many women, those very drugs can cause side effects that may make life unbearable, or won’t control their seizures. And seizures themselves can be dangerous, including in pregnancy. Seizures can lead to fatality. A seizure crossing the road or standing on a platform waiting for a train could have severe consequences. Over a thousand people lose their lives to epilepsy in the UK every year - half of them to Sudden Unexpected Death in Epilepsy. Good seizure control is vital. But so is the health of an unborn baby.

One mum, whose epilepsy medication caused both physical and neurodevelopmental problems for her children, told us, “I would have taken a seizure every day of my life to avoid what they are having to suffer.”

The problem isn’t new. Some 20,000 babies are thought to have been harmed by the epilepsy medication, sodium valproate, since it was first prescribed in the 70s. The drug is now tightly regulated and can’t be prescribed unless a woman is part of a pregnancy prevention programme.

But in 2021, the Commission on Human Medicines published a report which showed that several of the other commonly prescribed epilepsy drugs also elevate risk of harm during pregnancy. Equally worrying is that, for the remaining epilepsy drugs, there isn’t enough data to evaluate the risk. When this devastating news broke, our scientists at the Epilepsy Society were able to offer real hope. Back in the 70s, when valproate was first licensed in the UK, it was impossible to look at the genetic make-up of each individual woman to understand how she and her baby might react to a particular drug.

But our greater understanding of genomics means that we can now use big data to start to identify which women will have an adverse reaction to a particular drug during pregnancy, and which drugs will be safer for them and their babies.

It’s a massive undertaking to look at the genetic blueprint of every parent and baby affected by epilepsy. But we are ready to do it. We believe it’s worth it. Research now would mean that teenagers with epilepsy could be confident that, by the time they want to have a baby, science will be able to tell them their personal risk for each medicine and ensure the healthiest outcomes possible for their pregnancy. And that is for both parent and baby.

That glimmer of hope was born three years ago, and since then we’ve been campaigning for funding that would make the research possible and the lives of future generations safer.

The stumbling block, as always, is money. We estimate it will take £20m to understand, at an individual level, which drugs elevate risk during pregnancy and which would be safer.

But, in spite of the Government’s high profile Women’s Health Strategy committing to transform women’s health, and its ambition to be a world leader in life sciences, there is still no money to carry out this vital research.

We believe the testimonies of women desperate to have a baby, but anxious about the risks, would be enough to persuade the Government to invest in healthier outcomes for the next generation. That is how it should work. But, it would seem, we also need to prove that any investment would eventually translate into a saving. Money – or how to save it - makes politicians sit up and listen.

Economists at the OHE tell us that if some of the most severe harms caused by epilepsy medications were avoided in just eight pregnancies, the Government’s investment could quickly become a saving. There doesn’t seem much to argue against there.

You could never put a price tag on a baby’s life. Every baby should be unequivocally loved, valued and celebrated for all it brings to this world. But equally we believe that every child has a right to as healthy a start in life as possible and that parents should not have to make heartbreaking choices between what is good for them and what is good for their babies.

So we fight on.

Twitter: @epilepsysociety
Website: https://epilepsysociety.org.uk/

What are the two medications that are considered safe for Epilepsy during pregnancy? During both my pregnancies I took Keppra and Lacosamide and was advised these medications were safe.

Have taken epilepsy medication (Lamotrigine) since I was 15. I have two beautiful daughters 6 & 1. Took medication with both pregnancies but had a high folic acid supplement from the moment we were trying to conceive. First pregnancy was a text book pregnancy perfect from start to finish no issues; epilepsy in pregnancy didnt seem to be such a topic of conversation in 2017; i obviously saw specialists and had extra scans as a normal high risk pregnancy would but in comparison to my second pregnancy in 2022 it wasnt very much a talking point and being younger and a first time mom I assumed this was normal. Fast forward to 2022 and my epilepsy was a big focus in pregnancy, I had additonal appointments with midwifes who specialised in epilepsy and it continued to be a talking point throughout and my medication this time was monitored and doses where talked about, etc.. Second pregnancy wasnt straight forward my daughter was diagnosed with MCDK whilst in my womb. A kidney defect which can be caused by some epilepsy medication but can also happen to people who dont. I was under the illusion that epilepsy medications cause defects such as cleft lip palate and thats why to take higher folic acid. Its a hard topic to decide on as mom needs to be safe to carry baby but ultimately do I wonder that if I hadnt taken the medication would she have a single kidney now? Of course but abnormalities happen regardless of medications, diets, etc.. I think it is important that the correct care and advice is given to expectant mothers as this would help made the decisions needed prior to conceiving and ultimately its moms choice.

I was pregnant with my first child, I received the information that the drug I was on at the time - sodium valproate - and at the dose, would harm the baby, and my partner and I, who were petrified, and ill equipped to deal with the possible outcome, literally dragged our sad, lifeless bodies to have a termination thinking we were doing what was best.
There seemed to us at that time so little information and so little support from anywhere for either of us and just a stern female gp stating that spina bífida was almost 100% likely. We didn’t really recover from this experience (and even the termination itself is a cold, heartless place to be when you are right next to beautiful families with newborn babies, smiling joyfully and that’s if you pass by the “tents of hell” where women are treated similarly to animals, lined up to experience the procedure in their most vulnerable state).
My partner and I kept going and hoping that one day it would all be well and I could safely come off AEDs and maybe start a family? Maybe someone could guide us about drug safety? However as time went on I began to realise through all my grief and drug research, that there is very little knowledge available to women. I found the Pregnancy Register created by Jim Morrow et al. and this helped - pls look up - and I definitely knew through my own copy of the BMJ manual - internet wasn’t so good back then - that all the drugs aren’t “safe” however you take what you need to make you safe as an individual with epilepsy. This is a vital piece of information. You can’t get pregnant and keep cutting off the oxygen supply to your baby if you have a seizure. So it’s a balanced view. If you have a knowledgable GP and midwife, even better, neurologist, who can help with pregnancy, then that is awesome, and I salute them.
We didn’t. Nobody had a clue. It was just the standard advice : don’t take sodium valproate when pregnant. And then I got bundled off very quickly with the usual “baby stuff” and felt very scared. We both did. I came off Depo Provera and stopped sodium valproate. My only AED. I don’t ever recommend this to anyone. I would never even suggest it. We need AEDs. Our brains need help. HUGE DISCLAIMER RIGHT HERE!!!!
I was pregnant within a month and she stuck. The whole pregnancy was favourable. I had no seizures. I was clearheaded. I could think. I have been on sodium valproate since I was four or five years old. I had control over how much I ate. I couldn’t believe how great I felt. But there was worry and anxiety. I didn’t want to go too far and I wouldn’t travel long distances or fly. This was distressing. I worked throughout my pregnancy and was healthy aside from a run in with gestational diabetes in the third tri. I couldn’t really believe that no drugs gave me such a clear head.
Our small was born by emergency section (not chosen and for safety reasons) and she was healthy and a cutie. Still is. she brings us much joy and frustration in equal measures🤣

No she does not have epilepsy. People ask me this all the time and it’s annoying because it is my one fear and WHY would you ask another person that? Do you panic and just think without pondering how that make the other feel? I don’t get it.

As soon as she left my body, I was plunged into seizures again and I was put back onto AEDs quickly however sodium valproate didn’t work for me so I went onto Topiramate and Clonazepam which were zombiefying.
I couldn’t breastfeed due to the drug change but I was aware of this before I began, but what I wasn’t aware of was the rigidity of some peoples’ views on breastfeeding. It made me feel reduced, inadequate. Just not good enough. Every time I made up a bottle of formula I felt like I was giving my child something like a McDonald’s, I guess. I realised then that my experience of motherhood and parenting might be a bit different. This admittedly, did start during pregnancy when I could see that classes would be good to go to however when we went, there were few people there that my partner and I could relate to, mainly because of me having epilepsy. It was good to just share stories but then there are added issues that you just don’t want to bring up in a lovely joyous atmosphere. So it’s weirdly like an enforced isolation cos you can’t find any groups for parents with epilepsy.

by the time I managed to have my second child, nothing had changed. There was no further information for us. Sodium Valproate had received really bad press internationally regarding use during pregnancy, but so far the drugs I was on hadn’t been regarded as problematic and certainly not at any low dose. My seizures had been difficult - read: uncontrollable - since having my firstborn. Hormone fluctuation and tiredness are two of my triggers so obviously these had been crazy. We had three miscarriages and gave up for a long time.

Then, surprise baby came. And I hadn’t a clue. And I dropped all drugs suddenly. I had nobody medically around me who was any use (I appreciate you’re reading this and thinking “you’re an idiot. There are always medical professionals around to help.” And I would say that in a lot of cases there are. People do their best and they did. But in my personal experience I have only recently received a thorough diagnosis of epilepsy and the types of seizures I have. Prior to that my diagnosis was by sight alone; my notes had been lost since the nineties and inevitably, one department doesn’t speak to another department.
again DISCLAIMER - nobody should come off any drugs without speaking to a health professional. This is my story and my choice. I took a gamble and it paid off but it might not have done. I had no support, whatsoever.

Surprise baby was formed with some drugs in my system. Yes you flush them out with urine quite quickly and their half life remains for a while but they’re there, aren’t they? So Topiramate was my main drug not of choice at the time.

I’ve just received an informative book through my Pharmacy2U people telling me that it is now a dangerous drug to use during pregnancy. It highlights a whole other list of problems associated with taking it during pregnancy.

My neurologist categorically told me it was safe to use during pregnancy, but a bit of research informed us that it wasn’t, and should only be used if really necessary.

and this is it, isn’t it? Taking AEDs is all about balance. Because I don’t want to take them but I have to and have done my entire life. The one time I guess I felt as straight as I’m going to feel was during pregnancy but the rest of the time, I’m a bit spaced, and combatting this with caffeine. I can’t explain to anyone how taking opiates daily followed by some uppers and then an antipsychotic (these are all AEDs!) topped off with a couple double espressos feels but this is how I manage to work and function, and not go to sleep?!

Surprise baby, coming back to the point in hand, survived a tonic clonic without any effects. Throughout this pregnancy I remained on 75mg Topiramate begrudgingly. She was also a healthy pregnancy. She was born and immediately climbed up to look at my face. She’s been climbing ever since.

no breastfeeding again however this time my reflex seizures were extreme and I couldn’t hold her. I had to be monitored at all times. My partner had arranged me to go to a quiet NHS birthing centre after the hospital but they couldn’t cope with the seizing. They closed the curtains around my cubicle and asked my partner to transfer me back to the hospital. He refused and took me home where I just started to take a regular dose and I calmed within four hours. I tend to find that sometimes people are quite happy to be pro epilepsy until you kick off (literally!) and then they panic. In this case I was upsetting others in the birth centre. Which I understand. But where do I go?

however our little family got there through sheer determination, grit, not taking no for an answer, leaving the consultancy room and immediately going back in, questioning everything repeatedly, audacity(our view, and yours may be different and that’s fine) and although I’ve not been the most upright (lol) member of the community, I get knocked down seven times, I get up eight. Just keep going. As I get older it is harder. I’m fifty now however epilepsy won’t stop me. I currently take a shedload of meds and have undertaken medicinal keto for two years with an NHS dietician which helps with seizure control and meds side effects. I’d like more support for women in pregnancy, more awareness of catamenial epilepsy and more places to go for advice on epilepsy during peri/menopause.
i hope this helps someone.

I take topiramate and carbemazepine for epilepsy.

I fell pregnant in May 2020, had all the appointments with my consultant prior, given the green light.

My daughter was diagnosed with heart defects at 20 weeks, I signed the paperwork for a termination at 21 weeks. Gave birth to her at nearly 22 weeks.
Was very ill myself after birth, due to huge bloody lose and retained placenta that was left in place for three months. Pain and bleeding fobbed off - grief, apparently.

Fell pregnancy again in July 21. Again, under close supervision of my medical team at kings, and local hospital. Had my beautiful daughter in April 2022, she's perfect, thank god.

A little bit of me dies inside every time I get my prescription with the paper warning about taking topiramate whilst pregnant - the issues with my first pregnancy have been chalked up to the drug, and I'm beyond sick that I wasn't advised to stop taking it for my second pregnancy - the research had been done and circulated by then.

I was even called to kings for a 'debrief' after the research landed. That was one appointment I'm fairly sure they didn't expect the someone blunt outcome of.

It's a fucking mess.