{Extra Post} Tracheomalacia

I have been diagnosed with Tracheomalacia. My pulmonary doctor thought that it was the culprit of my breathing problems after he ruled out allergies and/or asthma a couple months back. But I was still too little to diagnose. We waited six weeks and had an x-ray redone which sent up a red flag so we proceeded to make an appointment at the hospital for a mag airway test (Tues 8/16). Which is just another x-ray but a bit fancier.  A physical has to perform this test (usually techs and specialists handle regular radiology tasks) and it takes multiple pictures in a row to be able to see action and comparison. I was not happy with this test. Not... happy. I laid there crying on that hard table on my back for one sequence and then they flipped me on my side for another sequence. One tech had my head, mumma held my arms, the doctor had the death grip on my butt/thigh and the other tech held my legs. I was SCA-reeming. Screaming. Snot. Tears. My head was purple. PUR-ple. And obviously, I was having breathing difficulties. Good times. Mumma has questions but has to wait until next week to talk to the doctor.

Here is the nicest and easiest read we could find on this condition (and in layman's terms):

Acquired Tracheomalacia is a weakness and floppiness of the walls of the windpipe (trachea) that develops after birth. Acquired tracheomalacia is very uncommon. Rarely, babies, infants, and adults may develop the condition. It occurs when normal cartilage in the wall of the windpipe begins to break down.

Congenital Tracheomalacia is a weakness and floppiness of the walls of the windpipe (trachea), which is present at birth. Tracheomalacia in a newborn occurs when the cartilage in the windpipe (trachea) has not developed properly. Instead of being rigid, the walls of the trachea are floppy. Because the windpipe is the main airway, breathing difficulties begin soon after birth. Congenital tracheomalacia is very uncommon.

All types of tracheomalacia are extremely rare; no definite incidence rates are available. The incidence of primary airway malacia was estimated to be at least 1 in 2,100.

Symptoms:  Breathing problems that get worse with coughing, crying, or upper respiratory infections. Breathing noises that may change with position and improve during sleep. High-pitched breathing. Rattling, noisy breaths

Exams and Tests:  A physical examination confirms the symptoms. A chest x-ray may show narrowing of the trachea when breathing out. Even if the x-ray is normal, it is needed to rule out other problems. A procedure called a laryngoscopy is used to diagnose the condition. This procedure allows the otolaryngologist (ear, nose, and throat doctor, or ENT) to see the structure of the airway and determine how severe the problem is. Other tests that may be performed include:  Airway fluoroscopy, Barium swallow, Bronchoscopy, CT scan, Lung function tests, Magnetic resonance imaging (MRI)

Treatment:  [Acquired] The condition may improve without treatment, but persons with tracheomalacia must be monitored closely when they have respiratory infections. [Congenial] Most infants respond well to humidified air, careful feedings, and antibiotics for infections. Babies with tracheomalacia must be closely monitored when they have respiratory infections. Often, the symptoms of tracheomalacia improve as the infant grows. Rarely, surgery is needed.

Possible Complications:  Aspiration pneumonia can occur from breathing in food. Babies born with tracheomalacia may have other congenital abnormalities such as heart defects, developmental delay, or gastroesophageal reflux.