Foetal anticonvulsant syndrome

Anti-seizure and mood-stabilising medicines are used for treating epilepsy, mental health conditions, migraines and pain.

In treating mental health conditions, sodium valproate (and other mood stabilisers) are mostly used for bipolar disorder and schizoaffective disorder. They are sometimes used with other mental health conditions, but less often. 

Some people who are planning a pregnancy would prefer to come off these medications before they conceive (get pregnant), and stay off them through pregnancy. This is understandable, but also a difficult decision as there is a significant risk of relapse of illness. Making this decision needs individual advice and tailored supports, with the goal of having a healthy pregnancy and healthy baby.

There are several different anti-seizure and mood-stabilising medicines available in Aotearoa New Zealand. Some of the medicines linked to FACS include:

• sodium valproate (Epilim – associated with highest risk)
• topiramate (Topamax, Arrow-Topiramate, Topiramate Actavis)
• carbamazepine (Tegretol)
• phenytoin (Dilantin, Dilantin Infatabs)
• ethosuximide (Zarontin)
• phenobarbitone 
• oxcarbazepine (Trileptal)
• primidone (Apo-Primidone).

However, this is not the full list and all anti-seizure and mood-stabilising medicines should be considered with caution. Read more about anti-seizure medication.

All anti-seizure/mood stabilising medicines taken in pregnancy have the potential to harm an unborn child but not all people who take them during pregnancy will have children who are affected.

The risks are higher with some medicines, including sodium valproate and topiramate, especially early in your pregnancy and at higher doses, or if you’re taking more than one antiepileptic medicine. It’s very important to keep taking your medicines until you’ve talked to your prescriber. Medicines help you stay well. If medicines are suddenly stopped or if the dose is reduced (without medical guidance), then this can put you and your unborn baby at risk. 

Talk to your healthcare provider regularly

Talk to your healthcare provider regularly, at least once a year, about your medicines and plan ahead. Keep taking your medicines until you see them. 

You should talk to your healthcare provider if you:

• are likely to start having periods soon
• are having periods and are sexually active
• are thinking about having a baby
• have taken these medicines while pregnant.

If you’re likely to start having periods soon or are having periods and are sexually active, make an appointment to talk to your healthcare provider. They will explain what can be done to avoid an unplanned pregnancy. If you could get pregnant, even if it seems unlikely, you should use 2 kinds of contraception. Some medicines affect how well contraceptives work and your healthcare provider can give you more advice. 

You might want to take your partner or a support person to this appointment to take notes of all the things that you and the specialist talk about. Write down the questions you want to ask before your appointment. See Let’s PLAN(external link) (te reo Māori(external link), Samoan(external link), Chinese(external link), Hindi(external link)) to help you prepare for your appointment.

Questions to ask

• What else can I do, including taking other medicines, to reduce the risk of harm to my baby and me?
• Who will be my lead health professional, the person who organises my care? (It’s usually your doctor or a midwife).
• Who will coordinate my pregnancy care, and any referrals to specialist maternity services?

Pregnancy planning

If you’re planning to have a baby, talk to your healthcare provider at least 6 months to 1 year ahead. They can make a pregnancy plan with you before you start trying to have a baby. Your healthcare provider should review your medicines and explain the risks and benefits of the medicines you take. 

The pregnancy plan will include:

• advice on 2 types of contraception while planning your pregnancy
• how to manage your medicines and the dose
• advice about taking folic acid every day to reduce risks to the baby
• information about other steps you can take to be healthy before becoming pregnant. 

If you’re taking these medicines and you are pregnant or think you may be pregnant, then book an appointment to see your healthcare provider as soon as you can. If you have a midwife (or lead maternity carer – LMC), speak to them too as soon as possible. These medicines can harm an unborn baby before you know you're pregnant. But remember that these risks don’t happen to everyone, so it's important to keep taking the medicines even if you think you are pregnant.  

Read more about preventing foetal anticonvulsant syndrome (FACS).

If you’ve had a baby while taking anti-seizure/mood stabilising medicines, talk to your healthcare provider. They may refer you to a specialist doctor (eg, a neonatologist or paediatrician). The diagnosis of FACS is made by a specialist doctor when:

• a pregnant person has taken an anti-seizure/mood stabilising medicine during pregnancy, and
• the baby/child has physical characteristics, malformations, and/or neurodevelopmental conditions where there is no other reason for these impairments. 

The diagnosis can be made at any age and may be considered at any time if developmental or other issues arise or if whānau is concerned about the child.

To make the diagnosis, the doctor(s) will take a detailed history and examine your child and whānau/family, and investigations will be done if needed. It can take a while for a diagnosis to be made. 

If your child has been affected by these medicines, you may be eligible for support from ACC. Talk to your doctor about making a Treatment Injury claim.

Don’t blame yourself – this is something out of your control. Allow yourself and your family time to adjust to the diagnosis.

Find a trusted health professional – ask them to review your medicine to make sure you’re receiving the right medicine at the right dose. Read more about self-care if you have epilepsy. 

Be open and honest with your partner. Talk to family, friends, a counsellor, healthcare providers, anyone who will actively listen and ask for support when you need it. 

Get in touch with support services/organisations (see below).

Foetal Anticonvulsant Syndrome New Zealand (FACSNZ)(external link) provides support, information and awareness of FACS through their website and Facebook page(external link). You can also contact them by phoning 021 189 4483.