Hannah Schow was born with Treacher Collins syndrome, a rare genetic condition that affects the development of a baby’s bones and other tissues in the face before birth. It affects one out of 50,000 births, according to Seattle Children's Hospital, where Hannah was treated.
The condition not only affected Hannah's facial features but her airway. To save her life as an infant, doctors performed a tracheostomy, where an incision is made in the windpipe and a plastic tube is used to get air into the lungs. As a result, it's difficult for people with a tracheostomy to speak and they are prone to infections.
Dr. Richard Hopper, surgical director of Seattle Children’s Craniofacial Center, said that Hannah's case of Treacher Collins was severe.
"Her face was rotated up," said Hopper. "The breathing passage was squished like [there was a] big tennis ball in her jaw."
Having a tracheostomy meant that Hannah spent the first nine years of her life having difficulty talking and being unable to do activities like swimming or hiking. Hopper also said having the tracheostomy can be dangerous, especially if it becomes plugged and blocks the airway.
A traditional surgery that moves the lower jaw would not have been enough to help Hannah, Hopper said. Instead, doctors planned on multiple invasive surgeries that would affect her skull. Hannah began undergoing a series of surgeries last summer. Earlier this year, she underwent the biggest surgery to remake her airway.
Hannah's parents said that after raising her for years with her tracheostomy, they were prepared to go through the grueling surgery. Hopper, along with 45 other medical staff, carefully planned out the invasive surgery that would help create an airway. A portion of Hannah's face would be rotated to help her breathe easier.
The rotation "swings forward and brings up whole airway," explained Hopper. "It's a big surgery."
After the surgery and weeks of healing, Hannah was finally able to take out her tracheostomy earlier this year.
"It was pretty special moment for our whole family," Hannah's mother, Jennifer Schow, told ABC News.
Hopper said the 9-year-old girl is already excited to do activities she had been unable to do before.
"She's doing fantastic the last time I saw her was after her tracheostomy was removed," Hopper told ABC News. "She was this bouncing ball of energy constantly wanting to show everyone what she can do."