Pregnant women with epilepsy are at considerable risk of dying during pregnancy and within 42 days after birth compared with women without epilepsy. In addition their children have a higher risk of death or severe illness in the first 28 days after birth compared with children born to women without epilepsy. These are the main findings of a large Nordic study and the researchers point to the importance of investigating why women with epilepsy and their children are at increased risk.
Women with epilepsy have an almost fourfold increased risk of dying during pregnancy and within 42 days after giving birth compared with women without epilepsy.
Further, their children also have an increased risk of being born with severe illness or dying within the first 28 days or being.
The conclusions stem from a large new study from the SCAN-AED project (www.scanaed.org) in which researchers from Denmark, Finland, Iceland, Norway and Sweden collected data from registries on 4.5 million pregnancies from 1996 to 2017, of which 35,000 were women with epilepsy.
According to Jakob Christensen, one of several researchers behind the study, the results show that women with epilepsy should definitely be monitored extra carefully when pregnant, and these women need very precise guidance on using antiseizure medication during pregnancy.
“Studies from Denmark have shown that mortality among children of mothers with epilepsy is lower today than in the past, but the mothers with epilepsy are still at high risk. Maybe we can never reduce the maternal mortality among women with epilepsy to the level of the background population. Nevertheless, we should focus on this area, since, in addition to having epilepsy, these women are often young, healthy and fit and should not die in relation to pregnancy,” explains Jakob Christensen, Professor, Department of Clinical Medicine, Aarhus University and Department of Neurology, Aarhus University Hospital, Denmark.
The research has been published in JAMA Neurology.
Mortality risk for pregnant women and their children
The study had two purposes: to investigate the morbidity and mortality among women with epilepsy during pregnancy and 42 days thereafter and to investigate the risk for their children.
People with epilepsy generally have increased mortality compared with the background population, but this has not been extensively studied in pregnancy.
The researchers obtained data from several large registries in Denmark, Finland, Iceland, Norway and Sweden to investigate this.
The researchers investigated the mother’s risk of death and severe illness during pregnancy and 42 days after giving birth, the child’s risk of death and severe illness after birth and the first 28 days of life. Finally, the researchers studied whether the risks were associated with the mother’s use of antiseizure medication.
“In the United Kingdom, every death in pregnancy is systematically investigated. Deaths in pregnancy indicate how well the health system is functioning. High maternal and offspring mortality indicates that the healthcare system is not functioning optimally. From the United Kingdom, we know that death among women with epilepsy during pregnancy is often related to seizures – a phenomenon known as sudden unexpected death in epilepsy,” says Jakob Christensen.
Almost fourfold increased mortality risk
The researchers studied deaths among pregnant women from week 22 of pregnancy until 42 days after giving birth. This revealed that women with epilepsy had a 3.9 times increased risk of dying or being hospitalised with severe illness. The researchers also found that pregnant women with epilepsy had an increased risk of hospitalisation with preeclampsia, embolism, disseminated intravascular coagulation or shock, cerebrovascular events and severe mental health conditions.
The children of women with epilepsy also struggled, with 48% higher risk of severe illness, including severe asphyxia during birth, and a 20% increased risk of death compared with the children born to women without epilepsy.
From previous studies in Denmark, Jakob Christensen notes clear improvement in childhood mortality in recent years, with mortality among the children of mothers with epilepsy now being similar to the mortality of children born to mothers without epilepsy.
The researchers also investigated the influence of using antiseizure medication during pregnancy and found that using antiseizure medication in pregnancy was associated with an increased risk of death and illness among both the mother and child compared with women with epilepsy who did not take antiseizure medication during pregnancy and their children.
Even though the study was large, the study had insufficient size to evaluate whether the risks varied by use of the individual antiseizure drugs.
Stopping antiseizure medication during pregnancy
The results are alarming, says Jakob Christensen, and he focuses on the fact that pregnant women with epilepsy have an almost fourfold increased risk of dying compared with pregnant women without epilepsy. However, he also points out that women with epilepsy who are not pregnant have even higher mortality than the background population.
“This is probably because women with epilepsy who become pregnant are healthier than women with epilepsy who do not become pregnant. Women with epilepsy who have many seizures may be more reluctant to become pregnant. This indicates that eliminating mortality completely among pregnant women with epilepsy may be difficult,” explains Jakob Christensen, who adds that the study also recommends more research into the causes of death among pregnant women and whether this can be avoided.
One option would be to monitor young women more closely and provide additional help and information when deciding on treatment in pregnancy.
“Some women with epilepsy stop taking medication when they become pregnant because they are afraid that this could harm their unborn child. We should ensure that this does not result in women having seizures and dying from them,” concludes Jakob Christensen.
