Hi, my name is Briana Mack, and I want to share the story about my son and his incredible journey as an infant living with a trach.
There are many national observance days that often get overlooked, but I hope to bring recognition to a day that’s dedicated to research and awareness of those who were born with an airway disorder, like my 2-year-old son, Jonathan. I’m talking about World Airway Disorders Day that’s celebrated each year on July 10. When Jonathan was born, he basically took up residency at Children’s Hospital New Orleans, spending 100 days in the NICU and undergoing several surgeries.
You see, Jonathan was diagnosed with Treacher Collins Syndrome, a genetic disorder that affects the development of bones and other tissues of the face. The entire time I was pregnant, no one knew that my sweet baby had this syndrome, and then, when he was just a couple of weeks old, he needed a tracheostomy due to restrictions to his airway.
Being a parent to a newborn is already a challenge but learning how to care for your newborn that needs to have his trach changed weekly to avoid complications was extremely nerve-wrecking. Thankfully, the staff at Children’s Hospital New Orleans was amazing, because they taught us everything we needed to know about inserting, examining, and cleaning a trach. I began to diligently research children living with trachs, and I also confided in the other awesome mommies and daddies who have children with trachs to absorb as much knowledge as I possibly could.
Here’s what I know: some people living with trachs can talk with their trach, eat well, drink properly, and make sounds while others cannot. Some are on the path of getting their trach removed, while others won’t. Each story is different, and each child is on a different path, but one thing remains constant, and that’s the love I have for my baby who’s navigating his infant years with a trach and the appreciation I have for the type of expert care he receives at Children’s Hospital New Orleans. My hope is that all parents stay strong as they navigate this difficult journey, and know you aren’t alone.
Don’t be afraid to share your story, too! Especially on this day, the day dedicated to our children, World Airway Disorders Day!
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