Two-year-old McKenzie Sizemore, for example, was born with Stickler syndrome, a defect that includes an under-formed jaw and cleft palate.
"This, in turn, has caused her tongue to fall to the back of her throat," said Dr. Timothy Turvy, an oral and maxillofacial surgeon at University of North Carolina Hospitals.
When McKenzie was born, otolaryngology surgeon Dr. Austin Rose opened a hole in the infant's throat in front of her neck so she could breathe. A feeding tube also was used since she could not swallow.
Earlier this year, McKenzie had surgery to help her eat and breathe normally.
"Since the jaw distraction surgery, her eating has increased pretty dramatically. She's gone up to the next level in (solid) foods," said her father, Tony Sizemore.
Because of her age, her bones were too soft for bone grafting. So, Turvy attached a metal device with external screws that Tony Sizemore and his wife, Kathy, turned twice a day for four weeks.
The device slowly pushed her jaw forward and opened her airway and esophagus. It eventually will enable Rose to remove the tube through which McKenzie has been breathing since birth, but he and the Sizemores first want McKenzie to grow more and build up her strength.
Meanwhile, the Sizemores are working to develop McKenzie's speaking abilities in time for kindergarten. She has used sign language to communicate.
Once new bone has grown to fill the gaps where her jaw was pushed forward, the metal device will be removed. After that, she'll need surgery to align her upper and lower jaws, but her parents and doctors said that could wait for several years.
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