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Dealing with airway defects: Local child diagnosed with rare breathing condition

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Laryngomalacia is a rare condition that can leave a baby struggling to breathe - or worse - not breathing at all. When Kyle Smith was born 19 months ago, his mom, Dakota, knew something was wrong almost immediately.

Baby Kyle struggled to breathe, and there was a strange whistling noise with his breaths. The center of his chest caved in while he was efforting to breathe. Dakota later learned that's called "retraction."

Kyle was losing weight, too. He was put in the hospital at two weeks for failure to thrive.

After weeks of worry, the symptoms eventually added up to a condition Dakota had never heard of - laryngomalacia.

Dakota explained, "The portion of your airway collapses in on itself, like back and forth, back and forth, so every time he breathes in it closes and every time he breathes out it opens."

The exact cause of laryngomalacia isn't known. Researchers lean toward a problem with development of the central nervous system.

As an infant, Kyle had to be watched constantly. He slept in a "rock and play" because sleeping on his back was dangerous.

Dakota continued, "Diaper changes, you had to do them quick, because we never knew if he was going to stop breathing at that moment."

Dakota copes with humor, but Kyle's 19 months of life have been a test.

She said, "Over time I was so scared and worried and constantly on edge, but I just have learned to accept that this is our new normal, and that's all you can do, you just wait for the next shoe to drop."

Most often, the condition gets better with time. Sometimes surgery is needed, but it's not always effective.

Kyle is much better. He probably won't need surgery, but he still has sleep apnea that can leave him turning blue. His parents watch and wait, and love their son.

"His smile, and the fact that no matter what he has gone through in these last few months, that he's still as strong as ever. We call him our little superhero, he actually has a superhero cape," Dakota said.

July 10 is World Airway Disorders Day, dedicated to raising awareness and money for research. CopingwithLM.org is a support network for families dealing with laryngomalacia and related conditions.