Tracheomalacia

There are so many things to learn when you have a child born with ea/tef that certain aspects of the condition remain a little fuzzy for a while. You figure out the eating stuff quickly. And surgeries, you focus on those too. But you keep hearing one word that you can’t quite keep in your head, the whole word anyway: trachea- something.

You start to focus a bit more when you notice that your adorable little cherub sounds like a walrus when she coughs. Or when, after surgery, the doctors can’t get little Jimmy off the ventilator for a while. His airway keeps col- lapsing when they remove the breathing tube. That’s when a lot of us take out a pen and paper and ask the doctor to spell out that word: tracheomalacia.

The word “malacia” (pronounced: muh-lay’-she-a) means softening.There are three places where a person’s airway can be soft: the voice box, the windpipe, and the breathing tubes. A person may have softening in one, two or three parts of the airway. People with ea/tef most com- monly have softening of the windpipe, or trachea, hence the name tracheomalacia. Soft airways do not hold their shape, and air does not flow through as well as it should. With tracheomalacia, you may hear a high-pitched, crowlike noise when your child breathes in (stridor). The child may also wheeze, cough or choke. Severe tracheo- malacia can also cause very short spells of no breathing (apnea). Your child may turn blue during these apnea spells.

Life with tracheomalacia has been described as what happens when you drink with a paper straw. After a while, the straw gets damp and no longer holds its shape. It col- lapes when you try to drink from it. Imagine your trachea as that wet straw. The worst part? The harder someone with tracheomalacia tries to breath, the more the “straw” collapses.

When children with soft airways are active, upset, eating or have colds, their breathing may be noisy. When they are calm and lying on their stomachs, their breathing may be quieter. Some babies may hyperextend their neck in order to adequately keep their airway open. As children grow, their airways get larger and firmer. In most children, soft airways are gone by two years of age. Some children may have noisy breathing until they are school age.

If children can breathe and are growing, their soft air- ways are not treated. They will grow out of it. If your child has trouble breathing because of soft airways, your child’s doctor may ask you to see an ear, nose and throat doctor or a pediatric pulmonologist for treatment. The doctor may do a test called a bronchoscopy to look at your child’s airways.

Thanks to Marsha (from the ea/tef website discussion forums), mother of Logan, for some of the information in the article, as well as for a couple of good referrals. These websites were also used: www.phoenixchildrenshospital.com and www.emedicine.com