Disclaimer: The following post outlines the writer’s personal experience with airway disorders. It is not intended to act as medical advice. As always, please consult your doctor with any questions about airway disorders.
July 10th. Airway Disorders Day. A day that was never on my family’s radar. Then, our perfect, full term baby boy was born. He latched, immediately. Nursing was a breeze compared to my first!
He grew, he nursed. A nurse made a silly comment about how wet and chokey his lungs sounded, and I brushed it off as, “He’s two hours old!” I never would have guessed he had airway disorders.
Then, he didn’t sleep. He choked, as soon as my let down came. Let’s not forget about the vomiting, either. Not just normal baby spit up or reflux. Full force, I can’t breathe, let’s drench the couch, choking on myself throwing up–at three weeks old.
Hospital Visits and Surgery
I altered my diet to help him, substantially, like I did with my oldest. Then, my first evening away happened–a COVID wedding for a close friend, four hours away. He was perfectly fine, until he wasn’t.
At exactly one month old–June 12, 2021–he had his first ER visit. June 14, 2021 was the start of his first admission. It took 38 more doctors’ appointments, eight more ER visits, one sleep study, and one surgery to diagnose something beyond “reactive airway disease,” when he was 14 months old.
A kind, very inexperienced but bold ENT shared that the way my son was breathing is something called stridor, partnered with wheezing and a tracheal tug, and it’s common with kids who have airway disorders.
From there, we went through a whirlwind of tests, x-rays, second opinions, surgeries, and specialists. A handful of the airway labels we’ve experienced include Laryngomalacia, bronchomalacia, FPIES, sleep apneas, and asthma.
Most of the time, kids outgrow laryngomalacia once their cartilage becomes stronger in their airways by 18 months. In the meantime, they may need a feeding tube and/or reflux meds. The unlucky few need surgery, typically a supraglottaplasty, to fix the problems that persist.
Occasionally, apnea, choking, and airway collapse isn’t solved by a “supra” alone, and further surgery is needed. Surgeons try to avoid removing tonsils and adenoids before age four, and almost never before the age of two due to the bleeding risk. If airway disorders persist, a repeat supraglottaplasty and removal of tonsils and adenoids is one of the only options.
Now, more than a year past our first diagnosis, we have even more diagnoses. He’s had more surgeries, seizures, sleep studies, ER visits, and hospitals stays. Yet, he is the happiest, silliest, smartest little guy. At barely two years old, he can talk your ear off, throw a ball better than many adults, name way too many kinds of trucks, sing you a plethora of songs, and annoy his sister so terribly well.
As a mom, it’s sometimes hard to wonder why I didn’t just advocate for more information on his nurse’s comment when he was just a newborn. However, I also know that he is perfect for our family.
He taught me how to advocate for others. He taught me that a “healthy baby” is such a loaded request. He’s given me lessons in running on minimal sleep, loving myself first so I can love on my kids and partner, and that doctors actually do not know everything, and asking questions is okay, even welcomed.
Airway disorders are terrifying. And exhausting. They are rarely talked about, not researched nearly enough, and can be dangerous. However, airway disorders are also entirely possible to navigate with the right team, research, and ability to ask for help. For more information on navigating airway disorders, please consult your child’s pediatrician, pulmonologist, or ENT. You can also read more on all sorts of airway disorders at https://www.copingwithlm.org/.