Women warned over meds with high risk for serious birth defects

One mother desperately wants others to know the true consequences of taking medications during pregnancy that are known to cause serious birth defects – education she says she missed out on.

Thousands of women and girls in New Zealand are on the anti-seizure medicines, which if taken during pregnancy have a risk for physical deformities and damage to the brain and heart for the baby.

That is something Jacki Morris has been living with since her son Matthew was born. He is 24 now but has the mental age of a one-year-old.

Even before Jacki got pregnant, she did everything right. When she and her partner Grant started thinking about starting a family, they went to a maternal foetal medicine specialist.

Diagnosed with epilepsy at the age of seven, Jacki has been on anti-convulsant medication most of her life to prevent her seizures. She asked the specialist if it was safe to keep taking the medication, called Tegretol (carbamazepine), if she got pregnant.

“He said that would be fine. I would just need to look for cleft palate,” she says.

Jacki and her partner researched cleft palate extensively, a birth defect where the roof of the mouth doesn't fuse properly to the nose. They decided the life-changing benefits of staying on her medication outweighed the potential risk.

What they didn’t get told was the risks were far greater than this. Their boy Matthew is non-verbal, and has multiple heart conditions and brain damage.

“If I didn't take the medication, I would have a 24-year-old son who would be out living a full life in the community with a job and would possibly have a partner or have his own children. But he will never achieve any of that,” she says.

“Heartbreaking doesn’t even cut it. You feel guilty because you were the one who took the medication. But I’ve since learnt New Zealand has known since the 1960s this medication isn’t safe during pregnancy.”

Now the chairperson of FACSNZ, a support and awareness charity for the condition, Jacki hopes to educate others about the risks and the options people have.

Foetal anti-convulsant syndrome (FACS) occurs when babies are exposed to anti-seizure medications during pregnancy. It can cause a range of defects such as dysmorphic facial or body features, neurodevelopment or cognitive difficulties and damage to the brain and heart.

Some babies exposed to these medications during pregnancy can also die before or shortly after birth.

The medications are also used to treat mood disorders such as bipolar and chronic pain such as migraines.

“Red list” medications, which have the highest risk, include sodium valproate, topiramate, phenytoin, primidone and phenobarbital. But there are several other medications which also pose a risk.

Ministry of Health data from 2024 shows nearly 14,500 females aged 10–59 in New Zealand are taking one of the eight red list medicines.

Dr Jin Russell, a paediatrician and Chief Clinical Adviser for Child and Youth Health at the ministry, says sodium valproate carries the highest risk of them all.

“If 100 babies are exposed to sodium valproate before they're born, 24 out of 100 would develop congenital heart defects, spinal defects, and possibly facial defects as well,” she says.

The baseline risk for these malformations among the general population is about two out of 100.

Babies exposed to sodium valproate during pregnancy are also eight times more likely to need increased support when they go to school due to autism, ADHD and other learning difficulties.

It’s unclear how many New Zealanders are diagnosed with FACS. There is no precise data because individuals are often treated by specialist paediatric clinics in the private sector and this patient data is not publicly available.

In 2024, the United Kingdom made it a requirement for two specialists to approve a new prescription of sodium valproate to help reduce the risk of foetal anti-convulsant syndrome.

Russell says so far, these changes have not been adopted by other countries, and there are currently no plans to adopt this approach here in New Zealand. Instead, the Ministry of Health is focused on increasing education among patients and the health sector.

She says there are signs these awareness campaigns are having an impact.

“Dispensing data has shown that over the past decade, there has been a steady reduction in the number of women taking sodium valproate,” she says.

“However, over the same time period, we're also seeing an increase in women prescribed other medicines which are also linked to FACS, albeit at a lower risk.”

The worst thing you can do is abruptly stop taking these medications as this can be dangerous for your health, says Russell.

Instead, if you are taking one of the medications, you should book an appointment with your doctor to talk about what medications you are on.

Russell recommends that you make a habit of seeing your doctor every year to talk about any life changes because this may change what medication is best suited for you – for example, if you get your period, are having sex or are thinking about having a baby.

If you are not planning to have a child and want to stay on this medication it is recommended that you go on two different types of contraception to prevent pregnancy.

“Taking these medicines can affect the efficacy of a contraceptive medicine, so that is why it’s important to use two,” Russell says.

Long-acting contraception such as an intrauterine device (IUD) or the progestogen-only implant are the most effective options. Depo Provera injection, the combined oral contraceptive pill or the progestogen-only pill are seen as less effective options.

Using condoms, withdrawal or fertility/period tracking aren't recommended as your main form of contraception because they're more likely to fail.

If you want to get pregnant, speak to your healthcare professional 6–12 months in advance to review your medication. This could look like lowering your dose or switching to a safer medication during pregnancy.

If you are breastfeeding, Russell recommends informing healthcare providers so babies can be monitored for any side effects or a safer treatment plan can be made.

Patients should be given clear information about medication risks during pregnancy. If you feel you don’t have enough information, ask questions and seek a second opinion, Russell says.

Jacki recommends writing notes during your appointment and bringing a support person who can support you and help make sense of the information.

“Sometimes you feel like there's a power imbalance because your doctor is the specialist, but it should always be a two-way relationship. Ask them questions, you know your body best. And don’t be afraid to do your own research with reliable sources or get a second opinion,” she says.

Looking back, Jacki Morris says she wishes she had access to the information that is available now. At the time, she says there was awareness about alcohol foetal syndrome, but not FACS.

“People would always say to me, did you smoke or drink during your pregnancy? But no one ever said to me, what are the medications that you were on during your pregnancy?

“We need to be comfortable with having really open and empathetic questions about what medications pregnant people are on, because you just don’t know until you know if one of them is harmful. We just need to know.”