I’m pregnant!

Congratulations – being pregnant is a wondrous time for all women.

Because you have epilepsy, however, you need to be mindful of certain issues and take some preventative measures.

Advice for Mothers with Epilepsy
Questions for your doctor
  1. Will my seizures change during my pregnancy?
  2. What happens if I have a seizure when I’m pregnant?
  3. Should visit at emergency department after seizure?
  4. How do I know when vaginal bleeding could be a sign of something serious?
  5. Will my medicines affect my baby?
  6. What are the chances my baby could have epilepsy?
  7. Are there foods I can eat to help my body better absorb folic acid?
  8. Will I have to have a C-section?
  9. Will I be able to breastfeed my baby?
  10. How often I should visit my doctor during pregnancy?
  11. Are you taking part in the EURAP Register (a long-term international study of antiepileptic drugs in pregnancy)?

Managing your pregnancy

What do I need to do first?

The most important thing to do straight away is to contact your doctor and/or specialist epilepsy nurse to let them know your news. It’s also important to:

  • Take your anti-seizure medication (ASM) as prescribed – only change how you take it on your doctor’s advice
  • Know your seizure type and risks
  • Keep track of seizures and triggers and report any changes
  • Remember, you’re now looking after yourself and your unborn child
    • Avoid stressful situations
    • Eat healthily
    • Get plenty of rest and sleep
    • Avoid alcohol and smoking.

Will my seizures get worse when I am pregnant?

Most women with epilepsy have the same frequency in seizures during pregnancy as otherwise and some have fewer seizures.

Unfortunately, some women have more seizures, or more severe seizures, during pregnancy. These can be caused by hormonal, physiological and even psychological changes when you are pregnant, including:

  • Changes to howyour body responds to your medication, because of hormonal factors, making your ASM less effective
  • Morning sickness causing you to vomit and throw up your ASM before your body has had the chance to absorb it completely– especially during the first 12 weeks
  • Your ASM dosage being thrown out of kilter, because ASM levels may be linked to your weight and, of course, you’ll gain weight while pregnant – your doctor may prescribe an increased dosage

Worry about your health and that of your baby causing stress and lack of sleep, which are seizure triggers for many people with epilepsy.

Questions for your doctor
  1. Will my seizures change during my pregnancy?
  2. What happens if I have a seizure when I’m pregnant?
  3. Should visit at emergency department after seizure?
  4. How do I know when vaginal bleeding could be a sign of something serious?
  5. Will my medicines affect my baby?
  6. What are the chances my baby could have epilepsy?
  7. Are there foods I can eat to help my body better absorb folic acid?
  8. Will I have to have a C-section?
  9. Will I be able to breastfeed my baby?
  10. How often I should visit my doctor during pregnancy?
  11. Are you taking part in the EURAP Register (a long-term international study of antiepileptic drugs in pregnancy)?

Your baby and epilepsy

Will my child have epilepsy?

The child of a parent with epilepsy is only slightly more likely to have epilepsy. The overall risk of a child having unprovoked seizures is 1% to 2% in the general population and about6% if their parent has epilepsy.

Your child is more likely to develop epilepsy if your own epilepsy was inherited (genetic).

If you’re worried they might have epilepsy, talk to your doctor about seeing a genetic counselor. Remember – most children with epilepsy gain complete control over their seizures and lead normal lives.

What are the risks to my baby while I am pregnant?

Both seizures and seizure medications pose risks to a developing baby. Seizures during pregnancy can cause:

  • Premature labour
  • Miscarriage
  • A dangerous lowering of the baby’s heart rate.

Exposure to multiple seizure medications increases the risk for cognitive impairment in a developing foetus, but we don’t know the comparative risk of different combinations of seizure medications yet.

Nevertheless, seizure control is critical during pregnancy because the risks from uncontrolled seizures are greater than the risks from medications.

What should I do to reduce the chance of birth defects in my baby?

Ideally you will have taken folic acid before you get pregnant.

Most babies are born with low levels of vitamin K, which is vital in helping a baby’s blood to clot and preventing serious bleeding. Certain epilepsy medications, such as phenytoin and phenobarbital, can increase the risk of a newborn baby having a vitamin K deficiency.

However, if your baby receives vitamin K at birth (which is now normal practice in most maternity units), it’s rare for that to happen.

Even if you take a medication that can cause a vitamin K deficiency, make sure you always discuss medications with your doctor before making any changes.

Valproate: what you need to know

What if I take Valproate and want to get pregnant?

Valproate is an ASM used to treat epilepsy. It can be very effective in controlling seizures, but if you have epilepsy and get pregnant while  on valproate, your baby is at risk of serious birth defects and developmental disorders. Taking folic acid does not reduce this risk.

While valproate is not suitable for women of childbearing age who could become pregnant, in some instances it may be the only choice where other treatment options have not worked. In these cases, very careful measures must be put in place to prevent pregnancy.

Where a woman on a medication containing valproate takes the decision to become pregnant, despite the risks, then the woman must be fully aware of, and accept, the high probability of serious birth defects in her baby.

What are the risks of taking Valproate in pregnancy?

For women who take Valproate while pregnant:

  • About 10 babies in every 100 will have a birth defect, compared with about two to three babies in every 100 for women in general. These include:
    • Spina bifida – where the bones of the spine do not develop properly
    • Face and skull malformations – including cleft lip and cleft palate, when the upper lip or bones in the face are split
    • Malformations of the limbs, heart, kidney, urinary tract and sexual organs
    • Hearing problems or deafness.
  • Between 30 and 40 children in every 100 will have developmental problems, such as:
    • Being late in learning to walk and talk
    • Lower intelligence than other children of the same age
    • Poor speech and language skills
    • Memory problems.
  • There is an increased risk of autism or autism spectrum disorders, and of attention deficit hyperactivity disorder (ADHD)

How can I get more advice on Valproate?

In February 2018, the European Medicines Agency (EMA) introduced measures to reduce the risk of exposure of unborn babies to valproate. Most EU countries have put these in place, and the UK also has a safety programme.

What if I find out I’m pregnant while taking Valproate?

If you’re taking valproate and you get pregnant, don’t stop taking your medicine without talking to your doctor first. This is because your symptoms may get worse.

Once you think you’re pregnant, contact your doctor as soon as possible. They may continue to prescribe valproate, but only if there’s no other suitable treatment for your epilepsy.

Labour and delivery

Will I be able to have a normal delivery?

Most women with epilepsy can have a normal labour and a vaginal delivery.

The risk of having a seizure when you are in labour is low. If it does happen, it doesn’t prevent you from continuing with a normal delivery once the medical team is satisfied that your health and that of the baby are OK. If they have any concerns, they might decide to deliver your baby by caesarean section.

Can I reduce my risk of a seizure during labour?

The good news is that you can indeed help to reduce your risk of having a seizure while you’re in labour. Here’s how:

  • Early preparation is key. Talk with your doctor and obstetrician before your planned admission date about seizure management while in labour, so the decisions you take with them are included in your hospital notes and available on the day.
  • Take your ASM to the hospital with you and take it at your usual time. You could ask the medical team or your partner to help you remember to take it.
  • If you are scheduled to have a caesarean section, make sure your medical team knows about your medication. You might take it in advance of surgery or have it administered intravenously if necessary.
  • Have an epidural early in labour to control your pain if this is a seizure trigger.
  • Make sure your medical team is aware of your usual triggers, especially if they include emotional stress and sleep deprivation,and how best you can avoid them.

If you feel nauseous, ask those looking after you for something to help with this so that you don’t vomit up your ASM before your body has absorbed it. It is vital that you continue your ASM as normal during this time.

What do I need to know about coping with pain during labour?

You have a lot of options available to you in dealing with labour. It’s a good idea to have a birth plan in place well before your due date. Consider the following points as you prepare your birth plan:

  • Having an epidural early in labour can offer strong pain relief so you can relax a little and rest.
  • Pethidine is used a lot in early labour and it can help with pain, but a high dose of pethidine can also be a seizure trigger.
  • TENS (transcutaneous electrical nerve stimulation) machines work by preventing pain being passed into nerve fibres and by stimulating the production of endorphins, the body’s natural painkillers.TENS machines work well during the early stages of labour and you can use them as a woman with epilepsy.
  • Many women find breathing exercises, often taught to women at prenatal classes, are helpful in managing labour pains. As you have epilepsy, you should avoid over-breathing, however, as it can also be a seizure trigger.

Don’t have an unsupervised water birth as you risk drowning if you have a seizure.

Once your baby is born

Do I need to change my ASM dose once I have the baby?

As your pregnancy has ended, you may need to change the dose. Set up a plan with your neurologist to monitor ASM levels after delivery so they can assess if the dose needs to change.

Can I plan to breastfeed my baby?

In general, if you have epilepsy, you can breastfeed your baby without any harmful effects to them from your breast milk. Your baby will already have been exposed to low levels of ASMs throughout the pregnancy, and their exposure from breast milk will be even lower.

Discover much more about breastfeeding and parenting as a person with epilepsy, including home safety, infant care, safety during seizures and more, on the I am a mother page.

Wherever you are on your journey, we have information to support you…

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