In an ideal world, women would have the opportunity to think about and plan a pregnancy long in advance. In reality, many are taken by surprise. No matter which category you fall into, it is never too late to start thinking about and planning for a healthy pregnancy.
No pregnancy is completely risk free however there are steps you can take to help minimise any risk by adjusting your lifestyle; not smoking; avoiding alcohol, raw fish and raw eggs; increasing your intake of folate (Vitamin B9) rich foods; eating a well-balanced diet; discussing any gynaecological or existing health conditions with your doctor along with any medications, supplements or natural therapies you may be taking.
By taking the time to think about your pregnancy, you and your doctor can identify and address any potential factors that could impact your health and that of your baby.
Pregnancy raises special issues for women with epilepsy. Epilepsy and antiepileptic medications affect each woman differently. Some may experience changes in their hormonal levels, others may find their menstrual cycle disrupted, whilst some may find no changes at all. While the vast majority of women with epilepsy deliver healthy babies, it is important to have an awareness of any potential risks so you and your doctor can work together to manage and minimise those risks.
It is not unusual for women planning a pregnancy, or suddenly finding themselves pregnant, to have questions about their pregnancy and how they will cope with raising a child. This is especially so for women with epilepsy.
How do I start planning for pregnancy?
Whether you are living with epilepsy or not there are many things you can do to plan for a healthy pregnancy such as deciding if and when you are ready to have a baby; discuss your plans with you doctor and identify a specialist you would like to see; ensuring you have an increased folate intake at least 3 months prior to becoming pregnant and for the first trimester; understanding any lifestyle risk factors that need to be addressed such as weight, consumption of illicit drugs, alcohol or cigarettes; travelling to regions with known diseases that may increase pregnancy risks. For women with epilepsy it is especially important to pre-plan pregnancy and discuss your desire to start a family with your neurologist.
Your neurologist will discuss your treatment plan with the aim for one medication (monotherapy) at the lowest dose to achieve the greatest seizure control, and with the most favourable profile for women during pregnancy and breastfeeding. The neurologist may also discuss genetic counselling if there is a strong history of epilepsy, other health conditions or major congenital malformations through your family.
What if I have an unplanned pregnancy?
The most important advice for any women with epilepsy taking antiepileptic medications, who finds themselves with an unexpected pregnancy, is to not panic and do not stop taking your antiepileptic medications. Contact your doctor to discuss your options. Most women taking antiepileptic medications continue on them throughout pregnancy and may require a change in dosage and will be closely monitored by their doctor.
Do seizures change during pregnancy?
All women’s bodies react differently to pregnancy. There are many changes during pregnancy, including hormonal variations, changes in medication clearance from the body, sleep disturbances, as well as new psychosocial stressors which can alter seizure frequency during pregnancy.
For most pregnant women who have epilepsy, seizures remain the same. For some, seizures become less frequent. Women with catamenial epilepsy may experience improved seizure control during pregnancy. For others, particularly women whose sleep or medications are affected by the pregnancy may notice an increase in the number of seizures. For someone who hasn’t had a seizure for several months before conception, there is less risk of having a seizure during pregnancy.
Women with poorly controlled epilepsy should be aware that an increase in medication dose may be necessary during pregnancy; those with good seizure control can be advised that any change in their medication is unlikely to be necessary unless the levels drop significantly.
How can seizures affect pregnancy or the baby?
The type of seizures you usually experience will influence the degree of stress any particular seizure places upon your body, even when you are not pregnant. Keeping this in mind the aim is to minimise seizure activity to reduce any unnecessary stress or risk to yourself or your unborn baby.
Seizures during pregnancy can cause:
- A transient reduction in oxygen supply to the unborn child; it is important to remember that focal or non-convulsive seizures have no known effect on the unborn child, however tonic-clonic (convulsive) seizures can have an impact.
- A transient slowing of the unborn child’s heart rate
- Injury to the unborn child such as, premature separation of the placenta from the uterus or miscarriage due to trauma, such as a severe fall, during a seizure. In late pregnancy, if a seizure results in a fall or serious injury, this could precipitate early labour or premature birth.
If a seizure happens during pregnancy, report it promptly to your GP or neurologist. They may need to check your medication levels or make an adjustment to your medication. If you have a seizure in the last few months of your pregnancy, your baby may need to be checked or monitored just as a precaution.
What about medication?
All medications are rated for their potential impact on the developing baby during pregnancy. Women who are not taking any medication during pregnancy have an average risk of approximately two percent of delivering a child with a major congenital malformation (MCM). Some antiepileptic medications at high dose are known to increase this risk significantly and these medications will be avoided where possible. However, as an entire group, women with epilepsy on antiepileptic medications have an increased risk of approximately four percent of delivering a baby with a MCM. The scale of this risk varies depending on the type, number and dose of AED and seems to increase with higher doses and if you take more than one antiepileptic medication.
It is important to note however that babies from women who took Epilim (sodium valproate) especially at high dosages, during pregnancy developed a substantially higher rate of malformations, and they have a high rate of problems with development and learning as they grow. For this reason, Epilim is not prescribed for girls or women unless other AEDs are not effective for their seizures or cause intolerable side effects.
If you haven’t had a seizure for over two years, you might be able to taper off medications well before you conceive and see if you remain seizure-free. This will depend on your epilepsy type and the risk of having a seizure without medication. Discuss with your neurologist and obstetrician, as you plan your pregnancy, for advice on discontinuing your medications and strategies to lessen the risk of seizures.
For most women, it’s best to continue treatment during pregnancy. To reduce the risks for you and your baby, your doctor will prescribe the safest medication and dose that’s effective for your type of seizures. Your blood levels will be monitored throughout your pregnancy.
A recent review of the antiepileptic medication and dangers to the unborn child has advised doctors to:
- avoid Epilim if equally effective antiepileptic medications are available
- aim for using one medication only (monotherapy)
- prescribe the lowest effective dose whenever possible, avoid Epilim doses of 700 mg or above, daily (if possible)
- avoid withdrawal or changes of antiepileptic medications if the woman is pregnant
The impact of many medications on pregnant women is unknown or only discovered after a woman taking the medication becomes pregnant, The Australian Pregnancy Register for Women on Antiepileptic Medication (APR) was set up in 1999 as an observation study to collect data to determine the impact antiepileptic medications (AEDs) have on pregnant women and their babies. Over the last eighteen years the APR has identified particular AEDs or combination of AEDs at higher dosages that lead to higher than expected major congenital malformations. They are now seeing a change in prescribing patterns to minimise dosages and avoidance of particular AEDs in women of child bearing age.
The Australian Pregnancy Register (APR) has identified no significant difference in risk of major abnormality for any of the commonly used AEDs, except for Epilim. Accumulated data from the APR indicated that over 90% of all women on an antiepileptic medication delivered a child with no birth defect however trends indicate with changes in prescribing practices this figure is improving.
What about labour and delivery?
Most pregnant women with epilepsy deliver their babies without complications. Seizures don’t commonly occur during labour but if a seizure does happen, it may be stopped with intravenous medication. If the seizure is prolonged, the obstetrician may choose to deliver the baby by caesarean.
If someone has had frequent seizures during pregnancy, especially the third trimester, there is an increased risk of having a seizure during delivery. More frequent appointments will be made with both the obstetrician and neurologist to monitor mother and baby during pregnancy. The best delivery method will need to be reviewed and discussed to make the most suitable delivery plan.
Choice of methods of pain relief during labour and delivery should be no different to other pregnant women.
If the antiepileptic medication dose is altered for pregnancy, the dose is most likely to be returned to pre-pregnancy levels shortly after delivery to continue keeping seizures under control and the medication at safe levels.
Is breastfeeding possible?
Women with epilepsy can safely choose to breastfeed, and the use of antiepileptic medications while breastfeeding does not pose significant additional risks. All the AEDs are excreted in breast milk, but for most, only in low to very low concentrations, so there is no reason why mothers taking AEDs should not breast feed. Overall, breastfeeding is correlated with positive health benefits for baby and mother, but if you experience breast feeding challenges, sleep deprivation and exhaustion may become problematic for the mother.
The neurologist or obstetrician will explain more detail in relation to breastfeeding whilst on antiepileptic medication ahead of time. They may recommend taking the medication after a feed. Sometimes a change in medication is recommended.
MotherSafe is a good resource for this information http://www.mothersafe.org.au/
Although there are no official sleep guidelines, aim for at least 6 hours of sleep with at least one 4 hour block of sleep. This is more likely to be attained by getting another family member to do at least one bottle feed of either pumped breast milk or formula. Having support in these initial months is crucial.
Women with epilepsy should not take baths when no other adult is around and aware, nor should they bathe the baby alone. Co-sleeping with the baby is not recommended as risks of injury or suffocation are increased.
Before trying to conceive, talk to a neurologist and obstetrician. Both will want to monitor you closely throughout.
Fortunately, most women with epilepsy give birth to normal, healthy babies. With proper planning and precautions the chances of having a healthy child is greater than 90%. No pregnancy is completely risk free however working closely with your doctor you can help minimise those risks.
- Planning a pregnancy, currently pregnant or recently given birth?
- On an antiepileptic medication with or without a diagnosis of epilepsy?
- Have a diagnosis of epilepsy and not on antiepileptic medication?
If you answer yes to two of the three questions above, we need your help.
To find out more go to Australian Pregnancy Register https://www.epilepsy.org.au/apr-registration/ or call 1800 069 722