In Focus: The women who could risk everything by getting pregnant

Jade Davies is the first to admit that she is often consumed by ‘mum guilt’.

But her feelings aren’t borne out of concerns that she may have given her kids too much screen time or overloaded them with sugary snacks. For Jade, it’s a far more serious issue, as she lives with the constant, gnarling worry that the potentially life-saving epilepsy drugs she had to take during her pregnancy may have caused her son’s health problems.

‘It’s hard, emotionally and mentally, not to blame yourself,’ admits the 31-year-old rebate clerk.

‘You go on to autopilot mode, but I have just got to do the best I can with whatever he is going to face.

‘There have been lots of moments where I blamed myself and doubted my parenting,’ Jade adds.

When she was pregnant with her second child in 2015, Jade was assured that her epilepsy medication was considered to be safe to take during pregnancy.

However, in January last year, a shocking report revealed that several anti-epileptic drugs (AEDs) routinely prescribed to pregnant women, can carry an increased risk of a physical birth abnormality or neurodevelopmental disability. This includes a drug that doctors had once told Jade was safe.

More worrying, for some medications, there simply isn’t the data available to say whether they are safe or not.

The review, published by the Medicines and Healthcare products Regulatory Agency (MHRA), led the Epilepsy Society to launch its Safe Mum, Safe Baby campaign to raise awareness of the risks many epilepsy drugs pose to babies during pregnancy.

Backed by a 1,500-signature strong petition, the campaign called on the government to fund research into safer epilepsy medication so that babies will not be born with preventable disabilities caused by their mothers’ life-saving drugs.

Yet just over a year on from this bombshell report and despite over 600,000 people living with an epilepsy diagnosis in the UK right now, little progress has been made and women with epilepsy are still facing the same heartbreaking dilemma.

Jade was diagnosed with epilepsy 10 years ago (Picture: supplied)

Jade, from Kent, has two children, 10-year-old Lily and Louie, aged six.

Lily was born without any health problems while Louie has hypermobility, didn’t walk unaided until he was two and has a speech disorder, which he is still being treated for – something his mum fears was caused by her medication.

Jade explains that her epilepsy was only discovered in adulthood, after she was diagnosed with cavernomas – clusters of abnormal blood vessels – which had led to a brain bleed when she was just 17. Initially, she recovered well and went on to have Lily.

However, when her daughter was just four months old, Jade was rushed to hospital with a stroke and it was only then that she mentioned the ‘funny sensations’ in her mouth, which were later diagnosed as epilepsy.

Speaking to Metro.couk, Jade says: ‘When I was first diagnosed 10 years ago I was put on a drug called carbamazepine, which made me feel nauseous, fatigued and not with it at all, so I was only on it for six months and they moved me on to another medication called lamotrigine. Then they stopped that and gave me another, levetiracetam. I was told all three of these drugs were safe to take.’

As both lamotrigine and levetiracetam are considered to be the safest AEDs to take during pregnancy, when Jade decided to try for a baby at the beginning of 2015, her GP gave her the green light, and within two months she was pregnant.

Although Jade’s seizures have never completely stopped with medication, and she sometimes has up to 12 a day, throughout her pregnancy her epilepsy remained stable and she was closely monitored by her medical team.

Then, six days before his due date of October 20, Louie, was born via an elective c-section, due to Jade’s epilepsy and cavernomas. He weighed just 5lb 13oz.

‘He was really tiny, but he breastfed straight away and at the time of birth there was nothing apparently wrong with him,’ remembers Jade. ‘There were no concerns. He was just very small and I was told at the time it could be because I was taking the medication.’

For the first year of his life, Louie hit all of his milestones. Then Jade started to have concerns about his development.

‘It was when he got to over a year and wasn’t progressing with his vocabulary,’ she recalls. ‘He was very much making sounds but he was not trying to copy sounds.

‘I kept an eye on it and waited for his two-year check. But by then he still could only say dada, mama and nana. I was naturally concerned why his speech wasn’t progressing and questioned what I had done differently in comparison to Lily – was I the reason why he wasn’t speaking? Was it my parenting? What hadn’t I done? I tried everything I could to help him learn and progress.’

Pregnant woman taking pill at home

The Safe mum, Safe Baby campaign called on the government to fund research into safer epilepsy medication (Picture: Getty Images)

Jade adds, ‘He didn’t walk until he was 18 months and then he wouldn’t walk without holding on to something until he was two.

‘He saw a physiotherapist who said he had hypermobility and his muscles or joints didn’t quite work because his ankles were not able to hold him up properly.

‘He was such a happy child, but I blamed myself.’

With the help of speech therapy and physiotherapy, Louie is progressing well and Jade proudly reveals that he has just achieved his yellow belt in karate. However, he still struggles with gross motor skills and other activities that children his age enjoy, such as riding a bike.

Although Jade had ‘no concerns’ about the medication she took during her pregnancy, she now believes they could be the cause of Louie’s hypermobility and speech issues. She adds that doctors never warned her about the problems which may stem from taking AEDs while.

‘They knew I wanted a family so they always said the three (drugs) I tried were the safest ones,’ she says. “They said there was a small risk of fetal abnormalities, but the only one they said could come out of it was spina bifida. They never said there were lots of different things that could go wrong.’

Despite Jade’s experience, the review published by the MHRA showed that while lamotrigine and levetiracetam do not increase the risk of physical abnormalities, compared with the general population, the risk is almost doubled for women taking carbamazepine.

But as far as Jade is concerned, a nagging doubt remains.

‘GPs and health care assistants never discussed the possibility it was my medication,’ she says. ‘I don’t think they even looked into my records to see what I was taking, but I mentioned it to my consultant a few times and he said possibly, it’s hard to say for definite.’

Lyndsey Fletcher from Portsmouth was diagnosed with a neurological condition called Tuberous Sclerosis Complex (TSC) aged 18, which is the root cause of her epilepsy.

Lyndsey and her son Caelan

As Lyndsey’s pregnancy was unexpected, she didn’t have time to change her medication (Picture: Supplied)

She became pregnant at 21 while studying at the University of Winchester. At this time, she was taking a high dose of carbamazepine, which the MHRA report flagged as having an increased risk of physical birth abnormalities.

‘They didn’t really have a chance to change it because it was a surprise pregnancy,’ Lyndsey explains. ‘Ideally they would have wanted to reduce it or take me off.’

While pregnant, Lyndsey didn’t have a seizure for eight months, which was the longest since she was eight-years-old. Then, at 39 weeks pregnant, while she was asleep in bed, she had an unexpected prolonged seizure, also known as status epilepticus, and was rushed to hospital.

‘Status epilepticus is when a seizure lasts more than five minutes or they occur one after another and then become a medical emergency when you don’t regain consciousness,’ she explains. 

When Lyndsey woke up, she was dazed and confused, and not quite sure what had happened.

‘It was all very surreal being surrounded by doctors and nurses with my pyjamas on and everyone asking me “how I feel”,’ she remembers. ‘The confusion even led me to believe I had had my little boy.’

Despite this setback, Lyndsey gave birth to her beloved son Caelan a week later, who was later diagnosed with Tuberous Sclerosis Complex – the same condition as his mum – after he experienced a type of seizure called an infantile spasm. 

In a bid to prevent the hereditary condition from being passed on to another child of theirs, when Lyndsey and her partner decided to have another baby, they underwent IVF using genetic screening.

This time, doctors were able to switch her medication to one which has a safer profile.

The fertility treatment worked and Lyndsey is now 38 weeks pregnant – but her new AEDs are proving less effective.

The 27-year-old says: ‘I’m on lamotrigine now, which is supposed to be safer, but my seizures are not controlled.

Lyndsey

Lyndsey is now 38 weeks pregnant with her second child (Picture: Supplied)

‘I’m on clobazam as well at night and that doesn’t seem to be reducing the seizures, but they can’t change the dose due to it already being high and initially used to balance the hormone changes during IVF treatment.

‘They recommended I went on levetiracetam as I came towards the end of my pregnancy, but I previously had suicidal thoughts (when taking it), so I didn’t want to take that.’

Lyndsey currently has seizures two or three times a month, each lasting up to a minute at a time. They are unpredictable, causing the mum-to-be extra stress during an already anxious time.

‘Seizures can happen wherever as it’s down to the TSC,’ she explains. ‘So I can have them in my sleep, I can have one in the shop.

‘I can feel them coming on and there’s nowhere to go, so it can give me a panic attack.’

Lyndsey adds that it’s hard not to feel vulnerable at times like this. She says her confidence has been knocked by the ‘embarrassment of a seizure occurring’, and that having her independence taken away is also difficult to deal with. ‘Like not being able to drive; that can be hard.’

And like many mums-to-be taking anti-epileptic drugs, Lyndsey keeps returning to the same thought about her unborn child.

‘I don’t like to be pessimistic as we are blessed for the IVF treatment to have been successful, however, there is still that risk that something, other than epilepsy, could be a difficulty we may have to face.’

What the Department of Health and Social Care say:

A spokesperson for the Department of Health and Social Care said: ‘The National Institute for Health Research (NIHR), backed by DHSC, funds research that looks into anti-epilepsy medications.

‘The NIHR has funded studies looking into anti-epilepsy medication use during pregnancy, including the Assessment of neurodevelopmental teratological risk in large cohorts (2013), the Antiepileptic drug monotherapy for epilepsy (2019), and the Developing a preconception care pathway for women with epilepsy in the UK (2020).

‘The NIHR welcomes funding applications for research into any aspect of human health, including epilepsy medication and pregnancy, and we encourage researchers to submit applications in this area.’

● The Epilepsy Society says it is important that no woman should stop taking her epilepsy medication without consulting her doctor.

Dr Thuva Amuthan, a GP based in Birmingham, says that prescribing AEDs to pregnant women is a difficult balancing act.

He tells Metro.co.uk: ‘It’s very hard as we don’t have enough research for medications for those breastfeeding or pregnant.

‘We have to balance the risks and benefits and make an ethical call on a case by case basis, mostly relying on expert guidance from hospital obsetricians and neurologists.

‘It’s always unnerving and you always triple-check the guidance and advice before you do it as you always want to do the best you can for the patient.’

Taking anti-epileptic drugs means that some women are made to think about their family plans many months or even years in advance, forcing them to make difficult decisions about their future.

Student Laura Moore was diagnosed with epilepsy at the age of 13. She was initially prescribed Lamotrigine but the medication made her seizures worse. At one stage Laura was hospitalised after experiencing eight tonic-clonic seizures (convulsions) and 100 absence seizures in just one day. 

She tried taking Levetiracetam, but it left her feeling severely depressed.

Laura’s seizures were eventually brought under control aged 15 by a drug called sodium valproate. She is now on the maximum dose and her seizures have stopped, allowing her to drive, work and study for a degree in decommissioning and management of nuclear waste at the University of Cumbria.

But the drug is known to pose a ‘significant risk’ in pregnancy. Over the last 50 years, up to 50% of babies exposed to valproate during pregnancy were born with a physical birth abnormality, such as a hole in the heart or extra fingers or toes, or neurodevelopmental disability. 

Laura Moore

Laura has made the heartbreaking decision not to have children as it will be too risky (Picture: Supplied)

The government’s own guidelines say it should only be prescribed to women of childbearing age if no other treatments have worked.

Laura recalls: ‘I was told that the best medication was sodium valproate. They advised me about the side effects, pregnancy-wise but when you are 15 and there’s already so many changes going on, you just want the seizures to stop.

‘But now I’m 23 and I’m coming up to the age when I’m thinking about a family and I’m having to deal with the consequences.’

At 18, doctors told Laura that it would be ‘safer’ for her not to have children. And having researched more about the devastating effect that sodium valproate can have on babies in the womb, Laura has made the difficult decision not to go through pregnancy.

‘It’s heartbreaking,’ she admits. ‘It makes me feel let down, upset, angry. That choice for myself has been taken away.

‘Obviously it’s not the doctors’ fault, they were just trying to help me the best they could and I’m glad they stopped my seizures, as I’ve been seizure-free for eight years.

‘But I always wanted to have my own family naturally and it’s just been taken away.’

Laura adds: ‘I just wish there was more choice when I was 15. It’s probably too risky for me now to come off sodium valproate and I will probably have another seizure again.’

She also admits that another reason that she doesn’t want to try a different drug is because what she’s on makes her feel ‘safe’ with her epilepsy. 

‘If I have a fit I will lose my driving licence, my independence and my confidence,’ she explains. ‘It will affect my whole life. I won’t be able to get to uni and that is a huge worry.

‘It would be devastating for me and all my loved ones, especially after the hard work and the long journey it has taken to get me to where I am today.’

Giving her support to the Safe Mum Safe Baby Campaign, Laura says, ‘I’m glad it’s being addressed because I do think epilepsy is one of those illnesses which is kind of forgotten about. It’s not as much discussed as other illnesses are.

‘If I talk to someone about it, there are all these questions because they don’t have a clue.’

Clare Pelham, Chief Executive at the Epilepsy Society

‘We do not want to be having this same debate in 10 years’ time,’ says Clare Pelham from the Epilepsy Society (Picture: Epilepsy Society)

Clare Pelham, Chief Executive at the Epilepsy Society, said that after the sodium valproate scandal, the MHRA report ‘set alarm bells ringing’.

‘History cannot be allowed to repeat itself, particularly when science has the solution,’ she tells Metro.co.uk. ‘We believe that science could resolve this heart-breaking dilemma by identifying at a genetic level exactly which women will have an adverse response to which drugs during pregnancy.

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‘When valproate was first licensed for use in the UK, we did not have the skills to sequence a person’s genes and understand how they are likely to respond to different drugs. But we do now.

That is why we have launched our Safe Mum, Safe Baby campaign, asking the government to provide vital funding into research to protect the lives of tomorrow’s children. 

‘Lack of money cannot be allowed to stand in the way of science that could stop preventable disabilities. We do not want to be having this same debate in 10 years’ time.’

Today is Purple day, a time to get people talking about epilepsy, raise awareness of the condition and raise vital funds. For more information click here.

Do you have a story you’d like to share? Get in touch by emailing Claie.Wilson@metro.co.uk 

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