Smiles reset future
TWO-YEAR-OLD HeidiMay Honess has a lot to smile about nowadays after painful surgery to break and reset her jaw has brought her closer to having a “normal” childhood.
It’s a far cry from April when Heidi-May nearly died from her undiagnosed rare condition, micrognathia, which caused her chin to be considerably undersized, blocking her airways.
Parents Belinda and Shane, of Baldivis, struggled for 15 months to get doctors to take seriously their concerns that something was wrong with their baby girl.
It wasn’t until she had an emergency tracheostomy at Princess Margaret Hospital to save her life that doctors finally diagnosed her.
Now researchers have revealed a way to diagnose the condition in utero.
The new research, released yesterday by the University of Sydney, is set to help patients and their families struggling with the condition.
Researchers analysed ultrasounds of more than 300 pregnant women and then determined a standard measurement for facial features, including the angle of the chin.
The measurements can now be used to determine if there is any sign of undersized chins in foetuses as young as 18 weeks.
Mr Honess said having an early diagnosis would save parents the stress and anxiety of not having a diagnosis at birth which could end up being life-threatening.
“Once we had the diagnosis after all those months of not knowing what was wrong, it was a real shock,” he said.
“So knowing beforehand would help you prepare for what’s in store, all the hospital visits and surgery.”
Since having the initial tracheostomy and a stomach peg because she was unable to eat properly, Heidi-May underwent corrective surgery in August ahead of her second birthday.
The six-hour “nerve-racking” surgery involved breaking her jaw in three places and then resetting it.
Surgeons then installed metal dividers into her jaw as well as bolts that protruded from her skull, behind her ears.
For three weeks, HeidiMay’s parents had to use a special screwdriver to turn the bolts 0.5mm twice a day to help set her jaw into place.
The bolts have now been removed and her parents can’t believe the transformation.
“We look at photos of her from four months ago and she looks like a completely different girl,” Mr Honess said.
Although Heidi-May’s ability to eat has improved, her jaw movement is still very restricted because her facial skin has been stretched taut.
“But despite everything she’s been through, nothing gets her down, she just keeps on smiling,” Mr Honess said.
Heidi-May will undergo surgery next month to alter the tendons and muscles in her cheeks.
Surgeons will also take cartilage from her ribs and insert it between her skull and jaw bones which are fused.
Once she heals from those procedures, Heidi-May can look forward to having her tracheostomy valve removed within 18 months.
Heidi-May faces numerous surgeries in coming years to re-break and set her jaw so her chin grows proportionately.
Apart from all the trauma of the surgeries, the Honess family also faces years of financial strain as the Federal Government doesn’t regard micrognathia as a disability.
If you would like to help the Honess family, visit gofundme.com/heidimayhas-a-rare-jaw-condition.
Little things: Heidi-May Honess happy at home with her toys.
Brighter outlook: Heidi-May before her operation and, right, with mum Belinda, Isabelle, 1, and dad Shane.