**Guest post by Amanda**

Since July 10th was Airway Defects Day I wanted to write a little bit about a very common airway defect that most people know nothing about…Laryngomalacia. Laryngomalacia is the most common cause of stridor in infants. The soft cartilage of the upper larynx collapses inward during inhalation, causing an airway obstruction and very noisy breathing. Laryngomalacia is one of the most common airway defects, but the public education about signs and symptoms is lacking quite a bit. After my daughter was diagnosed at 3 weeks old, I’ve even had to educate some doctors about the defect. In the picture below on the left is what a normal airway looks like, the one on the right is what an airway with Laryngomalacia looks like. That big U shaped cartilage is from Laryngomalacia, when the baby breathes in it covers the opening of the airway, and that is when you head the stridor (high pitched breathing).

Now I will tell you my story about when my daughter was diagnosed.. When Olivia came home from the hospital she was always a very noisy breather. Her pediatrician and my family all kept telling me it was normal and that she was fine. I figured my pediatrician knew best and I didn’t think anything of it anymore. When she was 3 weeks old I went to check on her in her pack and play and she was not breathing, her lips were blue, and she was limp. I am an EMT who is trained in CPR. I administered CPR to my child while calling 911. My daughter started breathing again after two rounds of CPR. The ambulance came and transported us to the hospital, then we were transferred to A.I. DuPont Hospital in Delaware. We stayed in the PICU for about 2 weeks and she was seen by so many specialists. Finally, the Ear Nose & Throat doctor came in and ran some tests. He did a scope and looked down her throat and then told me that my daughter has Laryngomalacia & Tracheomalacia. I had no idea what those two words meant or would mean for my daughter. Since she was 3 weeks old, I have done CPR on Olivia 5 times, she has turned blue more times than I can count, and she has been hospitalized over 15 times in her 2 years of life. In addition to Laryngomalacia she also has Tracheomalacia (another airway defect), GERD, Dysphagia, Aspiration, Seizures, Sensory Processing Disorder, and now we think she might be on the Autism Spectrum.

You can start seeing signs of Laryngomalacia in the first 2-3 months of life. The main symptom is stridor, and the noisy breathing will only get louder over the first year of their life. Some other symptoms are difficulty with feeding, vomiting or reflux issues (which makes Laryngomalacia worse), choking on food, stopping breathing, and chest or neck retractions (chest or neck sinking in while breathing in). In most cases Laryngomalacia is not life threatening at all, its just noisy breathing. In these babies where there is just the noisy breathing but no other problems, these babies will most likely outgrow Laryngomalacia as they get older, usually by 18 months. But in 5% of babies, like Olivia, it is life threatening. In that 5% cases a baby will normally have a surgery called a Supraglottoplasty, where the unneeded floppy tissue around the larynx is trimmed. This surgery may have to happen a few times in order for it to work as your child grows up. The surgery may not make the noisy breathing go away, but it will help your child breathe easier and will decrease the noise. My daughter Olivia is doing okay now, 2 years later. She still has her good days and her bad days, but we take it day by day!

If you think any of the above sounds like you child or if you are worried about your child having noisy breathing, schedule an appointment with an Ear Nose & Throat Doctor. They will do a scope down your child’s nose right in the office and will let you know right there if you child has Laryngomalacia and if they will most likely outgrow it or if they will need surgical intervention. A wonderful resource for information and support is www.Copingwithlm.org They have helped us in so many ways when Olivia was having troubles. They also send out care packages to little ones going in for surgery or going to get a sleep study, which include a handmade blanket, hat, hospital gown, and something special for mom. If you are interested in donating a handmade item, donations can be mailed to:

Coping With LM, Inc.
DONATIONS
PO Box 313 Port Monmouth, NJ 07758 USA.

Thank you for letting me share my story & share some information about Laryngomalacia!