Planning a pregnancy

As a woman with epilepsy, you need to plan well ahead for any potential pregnancy. It’s really important to understand:

• what you need to know and do to have the healthiest pregnancy possible
• the risks to a fetus of an unmanaged pregnancy in a woman with epilepsy.

Can I become pregnant?

More women with epilepsy than ever are becoming pregnant and having healthy babies. This is possibly because better seizure control and an improved understanding of epilepsy has resulted in more people with epilepsy entering into long-term relationships.

Nevertheless, women with epilepsy tend to have fewer children and a slightly lower fertility rate than those in the general population. This is likely to be down to a multitude of factors, including psychosocial influences, as well as hormonal and sexual changes resulting from seizures and certain anti-seizure medications (ASMs).

We know hormone regulation and the brain’s temporal lobes are connected. If you experience seizures in that area of the brain, it seems you’re more likely to experience an irregular menstrual cycle, ovarian cysts, and early menopause – all of which can make becoming pregnant more difficult.

Anti-seizure medication (ASM) can also affect how your body regulates hormones, which can cause fertility problems.

What should I know before becoming pregnant?

A healthy pregnancy is possible – most women with epilepsy have healthy babies. You need to plan well in advance, however. Doctors recommend planning from six months to a year before you decide to try for a baby.

Remember, while ASMs can affect your baby, so can epileptic seizures. Take time to learn about and understand these issues so you’re well-equipped for pregnancy.

Any medication may pose a risk of fetal malformations, which can happen at a very early stage of the child’s development, potentially even before you know that you are pregnant – that’s why early planning is so important.

Every woman is different, so it’s vital to talk to your doctor to come up with a tailored plan. Avoid making decisions without consulting your healthcare providers, or using advice from the internet.

What should do if I want to try for a baby?

• Talk with your doctor about your plans so they can help find the most effective and safe ASM for you, bearing in mind your type of epilepsy. The right ASM should reduce or eliminate seizures while minimizing any potential risk to a fetus.
• Your doctor may measure the level of anti-seizure medication in your blood before you get pregnant. This is measured by a blood sample and your doctor can use it as a reference for adjusting your ASM dosage when you’re pregnant to ensure the levels are safe for the fetus and for you.
• Consult a gynecologist too, and be sure to take prenatal vitamins and folic acid to lower the risk of birth defects. Start these at least three months before you try to get pregnant. Find out the amount of folic acid for you – this may be higher for women taking certain ASMs.
• Keep track of all your seizures and any possible triggers.
• Keep up a healthy lifestyle with regular exercise, a healthy diet and a good sleep regime.
• Try to visit your doctor with a family member or friend.

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 about 6% if their parent has epilepsy.

Your child is more likely to develop epilepsy if your own epilepsy is hereditary.

If you’re worried your child 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 if I get pregnant?

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

• Premature labor
• Miscarriage
• Lowering of the baby’s heart rate.

Exposure to multiple seizure medications increases the risk for cognitive impairment in a developing fetus, 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 may be greater than the risks from medications.

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

Women in general can decrease the risk of birth defects by taking folic acid when the brain and spinal cord of the fetus are forming, which is early in the first three months of pregnancy. That’s why women should begin taking folic acid before they get pregnant.

In fact, all women with epilepsy of childbearing age are encouraged to take a daily folic acid supplement.

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.

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 11 babies in every 100 will have a birth defect, compared with about two to three babies in every 100 for women in general. Potential birth defects as a result of taking valproate during pregnancy 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.

• At pre-school age, between 30 and 40 children in every 100 will have serious developmental disorders, 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. It is recommended that individuals taking valproate who are considering pregnancy check the EMA recommendations, and check resources from their local or national health authorities.

Please see the Further information section of this website for additional resources.

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.

If you think you’re pregnant, it is very important to speak with your doctor as soon as possible. They may continue to prescribe valproate, but only if there’s no other suitable treatment for your epilepsy.