With her peaches and cream skin, ginger locks, and bright blue eyes, two-year-old Heidi-May Honess is an adorable 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," her mom Belinda told us, explaining that her daughter's skull and jaw bones are fused together, which has prevented her from talking, eating, and breathing.
From the moment Heidi-May was born, her mom and dad, Shane, knew she had a jaw issue: "She had an obvious double chin," Belinda recalled. Still, they had
no idea the seemingly mild birth defect would be life threatening. "The problems started immediately." Belinda 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 parents 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," Belinda said.
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 pediatric ear, nose, and throat surgeon," Belinda admitted. "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," her mom said. 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 counseling after all this, but it’s made us stronger as a family," the mom shared. 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!"
To help Heidi-May visit her Go fund me page
This post was written by Natalee Fuhrmann. For more, check out our sister site Now to Love.
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