Leisa Millar’s daughter Beatrix inspired her to launch a brilliant podcast to support other working mums
WORDS: MARIE PENMAN IMAGES: LEISA MILLAR
There’s a lot to be said for a mother’s intuition. Despite being a first-time mum, Leisa Millar kept thinking something was wrong throughout her pregnancy with her daughter Beatrix.
When her baby was born, she was underweight, despite being 10 days overdue, and had a few other medical issues.
To Leisa’s dismay, her tiny daughter was immediately taken to the hospital’s special baby care unit. After five days, a doctor confirmed problems with Bea’s hip, heart and ears.
It turned out baby Bea had a rare genetic condition called Kabuki Syndrome, although this was only finally diagnosed almost two years after her birth.
Until then, Leisa and her husband, Jamie, both media professionals, were only aware that a genetic problem might be the cause.
Beatrix couldn’t sit upright until she was 18 months old, and only took her first steps with a walker when she was 23 months. The diagnosis was the first step towards the family’s new normal.
DIAGNOSIS
Doctors told us to try not to worry, but we couldn’t help it when Bea started missing milestones,” Leisa says.
“They tested for the seven most common conditions that could be wrong with Bea but couldn’t come up with an answer for us.
“Eventually, a doctor at Great Ormond Street Hospital in London suggested it might be Kabuki Syndrome.”
Although a rare condition – research suggests it occurs in around one in every 32,000 births – the name Kabuki was not unknown to Leisa. It’s a form of Japanese theatre that includes actors wearing a specific kind of make-up. It was thought that facial features of children with Kabuki Syndrome resembled this look.
The doctor directed Leisa to the charity Kabuki UK (kabukiuk.org.uk), where she was able to meet other families living with the condition – an invaluable support.
“The main benefit to finally getting a diagnosis for Bea was that we knew it wasn’t life-threatening, which was a huge relief.
“Although she had developed and grown as a toddler, there were definitely symptoms there.
“Strangely, though, my fi
