Epilepsy register helps for safer pregnancies

Danielle Heaven with her son Callum, 10 (pictured right), and Luci, 8.

An Australian register set up to help pregnant women with epilepsy has helped reduce the number of stillbirths and birth defects such as spina bifida, research shows.

One of only a few of its kind globally, the voluntary nationwide Australian Pregnancy Register (APR) collects information from pregnant women or those who have recently given birth, to determine which anti-seizure drugs are safest for babies, while also protecting expectant mothers from seizures.

A Monash University-led study, published in peer-reviewed journal Neurology, analysed the economic and safety benefits of the APR which has been running for more than two decades.

“We looked at the register’s effectiveness, in terms of preventing adverse pregnancy outcomes, along with the costs of such negative outcomes to society,” said lead author Associate Professor Zanfina Ademi.

Information collected by the register was estimated to have led to a decrease of 1,147 stillbirths over the two decades. Results also revealed about 5,500 fewer babies born with defects, and almost 2,700 fewer miscarriages as a result of the register.

This led to $9 billion in cost savings to society, including future gains due to preventions of morbidity and mortality, and a $191 million reduction in healthcare costs, Associate Professor Ademi said.

Danielle Heaven, who has drug-resistant epilepsy, signed up to the APR before the birth of her children, Callum, now aged 10, and Luci, 8.

“I felt very guilty and anxious about taking medication that I knew carried a risk for my baby. They reassured me that to stop taking medication would likely be more harmful to my baby if I was to have a bad seizure,” she said.

Danielle volunteers with the charity Australian Women with Epilepsy, which brings women together to learn from each other.

“I do always recommend the (Australian Pregnancy) register. It’s such a vital resource for women, so you can understand what your risk factors are and to give yourself the best chance at having a healthy baby.”

The register costs approximately $250,000 a year to run of which non-profit organisation Epilepsy Action Australia contributes $100,000 annually.

Epilepsy Register

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