A Hobart baby whose rare condition has stumped doctors for nearly a year has now had all of her baby teeth removed after biting off part of her own tongue.
Elena Bali was a healthy newborn until she woke one morning at six weeks old unable to open her eyes.
Doctors in Tasmania and Melbourne still cannot explain why.
“Initially we thought it’s just an isolated eye finding and for it to now kind of spread … the future for us is just very uncertain,” her mother, Laura Bali told Pulse.
“No one can tell us what’s gonna happen.”
“Her presentation of symptoms is just incredibly rare.”
Bali said that because the condition was not present from birth, many congenital causes have been ruled out.
Elena began having jaw clenching episodes a few weeks ago that grew stronger and more frequent.
“Then the clenching got so much worse that she bit off the front of her tongue and almost half of her tongue,” she said.
Elena was placed in an induced coma in the Royal Hobart Hospital for two weeks to help let her tongue and body heal.
Doctors tried seizure medications, but an EEG came back clear.
They looked at a mouth guard, but there was no safe option for a baby with no back teeth to anchor it.
Bali said removing the teeth was the only way to bring her daughter out of the coma, especially after she developed pneumonia.
“She’s a little gummy shark,” she said.
Elena has also been given Botox in her cheeks to reduce the clenching and the risk she blocks her own airway.
Repeat MRIs found her midbrain is shrinking, which doctors say is concerning in a baby under one.
Elena turns one on October 30.
The Tolmans Hill family is now in Melbourne for around two weeks, with an appointment at the Murdoch Institute for research-based genetic testing after standard testing came back normal.
Bali said the stay was their third stint in hospital this year.
“You can’t even celebrate coming home because it just doesn’t feel very celebratory because you still don’t know anything,” she said.
The family also runs Hobart bottle shop Hop, Vine and Still on Murray Street.
A GoFundMe has raised around $30,000, which Bali said allowed her husband to take time off work and help cover medical costs.
She said other Hobart hospitality businesses like Happy Larry, Ranita Ramen and Capital have dropped off food and offered support.
“It made us feel very supported and loved within the community,” she said.
“[Her husband] Ankit had to spend his first father‘s day in the hospital with her in the induced coma that was really sad.”
“The staff from the RHH were incredible and were braiding her hair every day, making sure she always looks pretty in her sleep and we felt very well looked after from the nurses and doctors.”
To donate to the family go here.
