An unexpected pregnancy at age 22 was notably frightening for Nicole McCarthy becuase only months earlier she had been diagnosed with epilepsy and had started on anti-seizure medication.
A neurological disorder that affects the brain, epilepsy can complicate pregnancy and early motherhood, with potential issues for both mother and child. An immediate concern for McCarthy was the impact the two medications she was taking for focal seizures, which begin in one area of the brain, might have on her unborn baby.
All anti-seizure medications come with some risk, albeit mostly low, of causing birth defects.In an ideal world, women with epilepsy are advised to attend a pre-conceptual planning clinic at least a year before trying to conceive, to review the types and doses of drugs they are being prescribed.
The medical advice to Nicole was that it would be best if she stayed on her medication. One of the drugs had been linked to an elevated risk of the baby having a hole in the heart and an extra scan was arranged for her.
“I remember none of that being really explained to me and just being told I had to go to this extra scan and being so unsure, thinking they’d seen something. When in reality it was just an extra precaution.” All was well when her daughter, Amelia, arrived in 2018.
Seven years later, Nicole and her husband Donal, who live in Tallaght, Dublin, are expecting their second child. But there is a “vast difference” in her experience of pregnancy this time around. There seems to be more awareness of epilepsy-related issues within the maternity system.
For her first child, “I was promptly ruled out for things like breastfeeding. They wouldn’t even hear of it. I had to fight and even then there was no support, so it didn’t work out for me. Whereas this time around, there is more support.”
There is also more research available on various epilepsy drugs and, because this pregnancy was planned, there were earlier conversations about her medication regimen.
“I came down from being on two medications to one, which is obviously how they prefer you to do it where at all possible.” The dose of the remaining one was increased “to make sure I was fairly secure with my treatment plan going into this pregnancy”.
At 32 weeks, she says she is still having an occasional seizure. “But in comparison to the first pregnancy,they’re much more controlled.”
Nicole loses consciousness during some of her seizures, but not all, and she is always aware of their imminent onset. Even when they have started, “I can hear people talking to me, I just can’t respond. Usually I would get a chance to make myself reasonably safe.”
When she was pregnant with Amelia, not only were her stress levels much higher but she was also fairly new to anti-seizure medication.
“The first time around it was all very terrifying. You hear so many women who won’t even consider having a baby because of it. This time around we were a lot more aware going into it. We kind of knew when I’d done it before, there was no real reason why I couldn’t do it again.”
Inquiry to Examine Impact of anti-Seizure Medication on Babies
An inquiry is set to hear from individuals and families affected by foetal valproate spectrum disorder, alongside assessing the health services’ capacity to address safety concerns related to anti-seizure medication. Chaired by barrister and mediator Brid O’Flaherty, the inquiry will gather testimony from those diagnosed with the disorder, their mothers, and other family members.
The inquiry follows research conducted through EpiKnow, a project led by Dr Aisling Walsh, which involved collaboration with people living with epilepsy.
Lisa Whelan, a mother of four and member of EpiKnow’s public and patient involvement panel, shares her experience. Diagnosed with epilepsy after a first seizure in 1991, she initially declined medication, opting rather to manage her condition without drugs.
After several more seizures, Lisa and her husband, Owen, faced the question of medication during her first pregnancy in 2002.Despite remaining seizure-free throughout the pregnancy, Lisa experienced a seizure immediately after delivering their daughter, Louise, in the rotunda hospital in Dublin. While frightening for medical staff, her husband remained calm.
The couple made a conscious decision for Lisa to avoid anti-seizure medication (ASM) in subsequent pregnancies, citing concerns about potential side effects on the unborn child. Lisa was willing to accept the risk to herself,having experienced seizures previously. They agreed to reassess the situation if she experienced a seizure during her second pregnancy, consulting with her neurologist. Maternity staff were prepared for this possibility.
Living with Epilepsy and Motherhood: Lisa Whelan’s Story
Lisa Whelan, a mother of four daughters from Beaumont, Dublin, has navigated the challenges of epilepsy alongside the joys and demands of family life. Her story highlights the importance of awareness, understanding, and informed decision-making for women with epilepsy considering motherhood.
whelan experienced an increase in seizures after having four children within seven years, attributing her triggers to sleep deprivation and stress. She began exploring anti-seizure medication with her husband, Owen, and her neurologist, after completing their family. Finding the right medication proved challenging, requiring trials of three different drugs over several years. “[It] takes weeks to build up to the right level for a medication and then, if it’s not working, it takes more weeks to be weaned off it before another one can be tried,” she explained.
Currently, at age 52, Whelan’s medication is effectively managing her condition.she is now seven weeks away from being seizure-free for a year. her seizures occur without warning and can require up to two days of recovery.
During her daughters’ infancy, Whelan proactively minimized risks by keeping them downstairs and always having someone present when navigating stairs. she has experienced only one notable injury related to a seizure – a concussion – but often bites her tongue or cheek during episodes.
Whelan actively volunteers with Epilepsy Ireland,advocating for public awareness and promoting the “Time-Safe-Stay” campaign,which educates bystanders on how to respond to someone experiencing a seizure. She also contributed a patient viewpoint to EpiKnow,offering insights into the questions and concerns women with epilepsy have regarding motherhood and the maternity system.
Whelan emphasizes that decisions surrounding motherhood are deeply personal for each woman living with epilepsy. Though, she believes that increased knowledge and understanding can considerably improve outcomes for both mothers and their families.