PROVO, Utah — Moments after baby Billie Mortimer was born at Timpanogos Regional Hospital in June, everyone in the delivery room knew something was wrong.
“You expect the baby to cry when they come out and she didn’t at all,” said Benjamin Mortimer, Billie’s father.
Doctors quickly worked to figure out what was wrong. They kept her in the NICU where a doctor performed a bronchoscopy, a procedure that let him look at her lungs and air passages.
“That’s when he saw that her vocal cords are completely fused and he was able to diagnose in that time that she has CHAOS, congenital high airway obstruction syndrome,” said Eliza Mortimer, Billie’s mother.
CHAOS is a rare condition with fewer than 50 cases reported since 1989, according to a report from Cincinnati Children’s Hospital.
“It is extremely rare, her doctor said he had only seen a case like this one other time in his career,” Eliza said.
Billie’s surgeons created a hole through the front of her neck and into her trachea. A tracheostomy tube was placed in that hole to keep it open for breathing.
Little Billie was sent home where at least one parent stays awake watching her at all times.
“If she pulls her ‘trach’ out she has somewhere around two minutes to live if we don’t get it back in,” Benjamin said. “And she plays with it all the time.”
Billie also needs regular airway cleanings since she cannot cough like most of us, so every few hours her parents stick a small vacuum tube down her throat to clear it.
The couple has had to make some tough decisions including quitting their jobs to become full-time caregivers.
“She requires a lot more hands-on care than most babies,” Benjamin said. “She is totally worth it!”
Eventually, Billie will need surgery to construct a new airway. But doctors aren’t sure if that will give her a voice.
“If she is able to talk it will be with a very scratchy, kind of weak voice but it’s better than nothing,” Benjamin said.
The family has also decided to move to Oregon at the end of December where family members can help with her care. A GoFundMe* has been set up to help with moving expenses.
They say although their lives have been turned upside down, they are blessed to have such a happy little girl.
“She deserves everything, and I just wish that her situation was different but I’m glad that she’s getting the help that she needs,” Eliza said. “Even if we have to change everything for her to do that.”
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