Pregnancy and epilepsy

Now you are pregnant

Contact your GP as soon as you find out you are pregnant. They can arrange speedy referrals to healthcare professionals such as a midwife, obstetrician, neurologist, epilepsy specialist nurse or doctor. To help with this process, the epilepsy maternity toolkit can be downloaded from: womenwithepilepsy.co.uk/pregnancy-toolkit

As you will be supported by a number of different healthcare professionals, the toolkit should list emergency contact details of your team. It should also have a summary of your epilepsy, treatment, and your management plan.

Seizures during pregnancy

Around one in every three women with epilepsy have an increase in seizures during their pregnancy. This can be due to things like their type of epilepsy, whether they are taking their medicine as prescribed, or lack of sleep.

Some women might have seizures because the level of their epilepsy medicine in their blood changes during pregnancy. So, your epilepsy specialist is likely to recommend that you have regular blood tests if you are taking certain epilepsy medicines. If the level of medicine in your blood changes, your doctor may adjust your dose. It’s up to you to decide whether you want these blood tests.

If your seizures change while you are pregnant, ask your GP or epilepsy specialist for an urgent review of your epilepsy medicine.

If I have seizures during pregnancy will it harm my baby?

During a tonic-clonic seizure your baby could get less oxygen in the womb. This could be harmful to your baby, particularly if you have frequent tonic-clonic seizures, or have status epilepticus. Tonic-clonic status epilepticus is when a tonic-clonic seizure lasts for five minutes or more, or when you have one tonic-clonic seizure after another without regaining consciousness in between.

Some seizures, particularly tonic-clonic seizures, can put you at risk of injury. A significant injury to your abdomen could cause bleeding or your waters to break. Although the risk is low, this could lead to infection and early labour.

Epilepsy Action has more information about seizure types and status epilepticus.

Could pregnancy be dangerous for me?

Most women, including women with epilepsy, have healthy pregnancies. But in all pregnancies, there’s a very small risk that the mother could die. If you have epilepsy, this risk is increased during pregnancy and in the 12 months following pregnancy. There could be many reasons for this including having a seizure due to lack of sleep, or missing epilepsy medicines.

Missed epilepsy medicines can lead to uncontrolled seizures, which can lead to sudden unexpected death in epilepsy (SUDEP).  Uncontrolled seizures can also increase the risk of death through accidents, such as drowning. For anyone who has seizures, there are ways to reduce the risk of drowning while bathing:

• Have a shower instead of a bath – it’s safer because the water runs away
• If a shower isn’t possible, keep the water depth shallow and turn off the taps before you get in or
• Don’t put the plug in, but sit in the bath with the water running from the taps or a shower attachment
• Have a bathroom door that opens outwards, or folds or slides open and closed. Then, if you fall against it during a seizure, you won’t block someone from getting in

Epilepsy Action has more information about SUDEP and safety.

What scans and tests will I need during pregnancy?

You might not need any extra tests while you are pregnant, just because you have epilepsy. But if your doctor thinks you are at risk of more seizures during pregnancy, they may suggest you have extra blood tests to check the levels of medicine in your blood. This is particularly recommended if you take carbamazepine, lamotrigine, levetiracetam, oxcarbazepine, phenobarbital or phenytoin. Research has shown levels of these medicines can decrease during pregnancy, making you more at risk of having seizures.

You will be offered a dating ultrasound scan between 8 and 14 weeks and a scan between 18-21 weeks to take a close look at your baby and your womb. Otherwise, you will be assessed on an individual basis, to see if you need further scans or monitoring.

It’s up to you whether you want to have screening tests to check your baby’s health and development. You might choose to have all the tests, or to have some tests, but not others. The screening tests occasionally identify an abnormality which needs further investigation to check on what impact it will have on your baby’s life. If this happens, the doctor will give you all the information you need to help you make decisions about what to do next.

If you need further support, or help to make decisions, the maternity team will tell you about the most appropriate support groups or services available.