Laryngomalacia

If your baby has this you know what it is and you don’t wish this on any other parent out there. Sadly, my son was one of the babies born with this.

Laryngomalacia is a congenital softening of the tissues of the larynx- a.k.a. the voice box. This structure opens and closes when you are drinking in order to avoid any liquid, food, or saliva from getting into your lungs and keeps you from choking, which is clearly not good. Adults experience this sometimes when they are drinking and the water goes down the wrong pipe. Well, infants with this have this particular structure malformed or too soft and the liquid almost always goes down the wrong pipe. If that is the case, it is usually paired with symptoms such as noisy breathing (stridor), high pitched sound, difficulty feeding, choking while feeding, GERD (reflux),  and aspiration (inhaling food into the lungs). There are a few other symptoms, but these are the ones my son experienced. In most infants, this usually resolves itself between 12-18 months. If not, surgery is required.

Our experience with laryngomalacia has not been a very fun one, but thankfully my son isn’t to the point where he need surgery…at least not right now. Our pediatrician told us that his symptoms was one of the worst that he has seen. His breathing was so wheezy that he sounded as if he has been smoking for 50 years. His GERD was so severe that he was on Prevacid [the top antacid for infants] & Mylanta whenever his symptoms were too severe. He couldn’t drink anything without choking, so he drinks thick-it-2 with his  bottles. We went to Children’s Hospital when he was about one month old to have a swallow study done (saddest thing ever), and he was aspirating some liquid into his lungs, so the thickener in his bottles helps for that. Because of all of this, our son was at high risk for pneumonia-but thankfully that never happened!

Keo just turned ONE a couple of weeks ago, and majority of his symptoms have subsided. All except choking. Like really bad choking.. just last night he choked really bad on his saliva. It happens anytime and anywhere. The worst is when we are driving and he is in his carseat.

After a year of not so fun choking, he (obviously) freaks out and gets super scared every time it happens. It literally breaks my heart and is the saddest thing. I just want to help him. Right now, we are using thickener is his bottles and we are going to work with a swallow therapist to see if that helps. If not, the next step will be thickener in every liquid and maybe even surgery. Not fun.

If your baby has this, you are not alone. It will get better and symptoms will slowly fade away. If you need support getting through this time, please email me or contact me on FB. I would love to be your support.

Here is a picture of poor little Keo at Children’s Hospital. They were worried they were going to have to fight him to get the liquid down, but my baby drank that nasty, chalky barrium like a champ! Still, it was heartbreaking seeing him attached to everything…

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