In this episode of Rare Aware, we sit down with Denise Astill who was made an Officer of the New Zealand Order of Merit (ONZM) in the 2025 New Year Honours for her services to the prevention of foetal anticonvulsant syndromes.

Her story starts at the age of 16 when diagnosed with epilepsy. Denise never thought that years later her anti-seizure medicine would have such devastating results with lifelong consequences. Her very much wanted and planned IVF babies were harmed by her antiseizure medicine (valproate) during pregnancy.

Having daughters with Foetal Valproate Spectrum Disorder Denise decided a change needed to happen so childbearing people wouldn’t go through the heartache and heartbreak of having their babies harmed by anti-seizure medicines during pregnancy. This is why she formed Foetal Anti-Convulsant Syndrome NZ.

Did they know back then that the antiseizure medicine would cause harm to a baby? Is it just her daughters that have been harmed or is it other whānau too?

Listen to Denise's journey and the incredible work she has done for whānau in New Zealand.

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