Aussie mum’s battle
Heidi-may’s rare jaw condition had doctors at a loss, but her determined mum wasn’t giving up
With her peaches-andcream skin, ginger locks and bright blue eyes, two-year-old HeidiMay Honess is a gorgeous little girl. But her flawless looks mask a spate of health problems that until recently had doctors baffled.
“Heidi-may has micrognathia, a very rare condition where her lower jaw has stopped growing,” says her mum Belinda, 33. Her skull and jaw bones are fused together, which has prevented her from talking, eating and breathing.
From the moment Heidi-may was born, her mum and dad knew she had a jaw issue – “she had an obvious double chin,” Belinda says. Still, they had no idea the seemingly mild birth defect would be life threatening.
“The problems started immediately,” recalls Belinda, who took Heidi-may to the first of 16 doctors just a couple of weeks after her birth. “She was having real trouble breastfeeding, and we didn’t know why. Her lips would open, but her jaw wouldn’t part, so there was no suction. I got severe mastitis because I couldn’t release my milk, and ended up in hospital for a week with organ failure. It nearly killed me.”
Soon after, the worried mum and dad – storeman Shane – noticed their little girl would stop breathing in her sleep. “Shane and I had to take turns staying awake to hold her upright in bed at night, which seemed to keep her breathing,” says Belinda.
The sleep-deprived parents knew they had to do something to help little Heidi-may – and they wouldn’t stop until they had answers.
“All I kept thinking is this is not right. So we forced our GP to refer us to a paediatric ear, nose and throat surgeon,” says Belinda. “They picked it immediately.” Heidi-may wasn’t getting enough oxygen – “she had an indent on her chest from sucking in so hard to breathe each night”.
The doctor performed a tracheotomy to help her breathe. And later this year, she’ll have her jaw broken and shaved, to make room for cartilage from her rib.
Now Belinda is fighting to get funding to help “trachy families”. “We’ll probably need counselling after all this, but it’s made us stronger as a family,” she says.
As for Heidi-may, she seems happily unaware of the trauma in her life so far. “She’s a very affectionate, sociable child, an ‘old soul’ and very accepting of her lot,” smiles Belinda.
‘All I kept thinking was, this is not right’