An unexpected pregnancy at age 22 was particularly frightening for Nicole McCarthy because 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.
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“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 immediately 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.”
Even during the first pregnancy, she took reassurance from the fact that her epilepsy team had put her on a high dose of folic acid as soon as she started medication. She has continued to take that ever since, to help counteract some of the developmental risks to an unborn baby.
Nicole will be participating in an event this Thursday, November 27th, in the Royal College of Surgeons Ireland (RCSI), to unveil a new set of resources for women with epilepsy. Designed as an aid for navigating preconception, pregnancy, birth and the post-partum stages, they are a response to an RCSI study that found less than half of online resources offer reliable information to these women about having a baby. Of the estimated 45,000 people living with epilepsy in Ireland, about 10,000 are women of childbearing potential.
Most expectant women with epilepsy will have normal outcomes but their pregnancies are deemed high risk, says Dr Jade Parnell, senior post-doctoral researcher on the EpiKnow project, in the RCSI school of population health. They will have extra antenatal appointments, as their pregnancy management can be complex. There are important considerations, such as seizure safety, as well as the potential impact of anti-seizure medication on the baby.
Research has shown that women regard healthcare professionals as their number one source for trusted and specific information. However, they tend to corroborate that information or do their own investigation online, says Parnell. Yet women say they do not know how to judge the reliability of various online sources.
The study scientifically analysed more than 40 online resources for the quality of maternity information being offered to women with epilepsy, grading them from excellent to very poor. Some 28 per cent were deemed poor. The authors believe it was the first study to systematically assess the quality of such resources for women with epilepsy, across preconception to post-partum. The resulting directory will help point women to the most reputable ones.
Other new resources from EpiKnow include a checklist guide to issues to discuss in maternity-related conversations with health professionals. It helps women ensure that the things they need to know are covered because there’s not a lot of time in these consultations, says Parnell. There will also be some specific medications resources, “because that’s quite a whole beast in itself”.
A non-statutory inquiry started last July into the past licensing and use of one anti-seizure medication, sodium valproate (trade name Epilim), among women of childbearing potential in this country. First licensed for use here in 1975, Epilim was prescribed to many women without any warning, despite emerging evidence about its risks to an unborn child.
“In 30-40 per cent of cases where the child has been exposed to valproate in utero, the child will have serious developmental disorders,” according to Epilepsy Ireland. “In 10 per cent of cases, the child will have congenital malformations.”
The inquiry, chaired by Brid O’Flaherty, barrister and mediator, will hear from individuals diagnosed with foetal valproate spectrum disorder, their mothers and other family members. It will also assess the current capacity of the health services to respond to safety issues related to the use of anti-seizure medication.
A broad range of experts collaborated on EpiKnow, headed by principal investigator Dr Aisling Walsh, including people living with epilepsy.
Mother of four Lisa Whelan was on its public and patient involvement panel. She was 18 when she had her first, tonic-clonic seizure, of which she had no memory, in 1991. Her parents brought her to a specialist who told her she could either go on medication for the rest of her life, or say three Hail Marys before she went to bed every night.
“I said: I’ll take the three Hail Marys, thanks very much. And that was that.” Four years passed before she had a second seizure and was officially diagnosed as having epilepsy. She turned down the option of anti-seizure medication, feeling that the episodes had been so far apart, it was not necessary.
By the time she and her husband, Owen, were expecting their first child in 2002, she had had several more seizures. But there was little talk about her epilepsy as she navigated the maternity system. She remained seizure-free throughout her pregnancy before giving birth to Louise in the Rotunda hospital in Dublin in August that year.
“However, in the delivery room, straight after I delivered her, they gave her to me, and then I handed her to my husband, and I immediately took a seizure.” Medical staff rushed into the room.
“They panicked, but everything was fine. I just took a normal seizure that my husband was used to seeing me take.” It was “scary for everybody around”, except Owen who was “cool as a breeze”, she says.
The Whelans planned to have more children, so they made a conscious decision that Lisa would continue to stay away from anti-seizure medication (ASM).
“There’s an awful lot of side effects that the ASMs can have on the unborn child ... We just didn’t want to take any chances and I was prepared to take a risk myself, even though I’d had seizures before.” But they agreed that if she were to have a seizure during her second pregnancy, they would review the situation with her neurologist.
Maternity staff were prepared for the possibility of a seizure after Lisa delivered her second daughter, Emma. “And the exact same thing happened.” Both births had been induced but only on the second did she have an epidural (pain is considered a potential trigger) yet both ended with a seizure.
During her third pregnancy in 2006, she was offered a consultation with a midwife who had specialised in epilepsy. She put a plan in place for Lisa, once she was in established labour, to take medication that might help relax her brain.
It worked. Lisa was delighted to get out of the delivery room without a seizure after birthing their third daughter, Rachel, in January 2007.
By the time she was expecting baby number four, “I was very much more astute”, says Lisa. She told hospital staff she needed the same plan in place. “I took the medication and I never had a seizure,” she says of the delivery of their fourth daughter, Sophie, in 2009.
With four children born within seven years, she was understandably “a little bit wrecked” from running around at their home in Beaumont, Dublin. She started to have more frequent seizures.
“I now know my two triggers are sleep deprivation and stress.” She, Owen and her neurologist all agreed that, with their family complete, Lisa should start on anti-seizure medication.
“It was a little bit of a rocky road for a few years just trying to get the right one to work. I was on three different ones at three different stages.” 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 explains.
At the age of 52, her current medication seems to be working well. “I’m seven weeks away from being one year seizure-free.” She never gets any warning of a seizure, during which she loses consciousness. It could take her two days in bed to recover from some of them.
When Lisa’s daughters were babies, she would keep them downstairs in a Moses basket or pram and never carry them upstairs on her own. It was always at the back of her mind that something could happen. She herself has only ever had one significant injury, “in that I got a bad concussion. Other than that, I’ve bitten my tongue and my cheek”.
A volunteer with Epilepsy Ireland, Lisa advocates to raise public awareness of the condition and promotes the “Time-Safe-Stay” campaign to educate bystanders on what they should do if somebody is having a seizure. For EpiKnow, she gave a patient perspective on questions women with epilepsy would have when considering motherhood and navigating the maternity system.
Decisions relating to motherhood are very individual, she acknowledges, to every woman living with epilepsy. But improved knowledge all round can only lead to better prospects for them and their families.
- Registration for the EpiKnow Showcase at the RCSI, St Stephen’s Green, Dublin on November 27th, 11am-1.45pm, is open. For more information, see Epilepsy Ireland’s website
