Laryncomalacia
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My son was diagnosed with Laryngomalacia when he was fifteen months old. You would think that getting a diagnosis of anything would make a parent’s heart sink, but this particular diagnosis came after several other mistaken diagnoses that turned out to be wrong: asthma, RSV, pneumonia, and plenty of other interesting theories. It also came after a four day hospitalization where the doctors spent a lot of their time scratching their heads and wondering aloud why my son wasn’t breathing like he should.
Laryngomalacia has something to do with the cartilage within the trachea, although I’m not entirely sure on all the specific details because I never went to medical school (who am I kidding…I didn’t even take anatomy class in high school). This makes my son’s breathing sound crispy whenever he gets a cold, and this crispy breathing lasts long after the cold has gone away. It was maddening before the diagnosis was actually made, because I had a bunch of doctors and specialists telling me so many different things. All I knew was that something wasn’t right.
I could have merely accepted the asthma diagnosis, but it concerned me that he was unresponsive to medicines and treatments that usually help asthmatics. Every time a doctor told me in a concerned voice that my son may have pneumonia I was polite and went along with the x-rays, but I knew that wasn’t the problem. My son’s breathing problems started when he was around three months old, so we went through this for a year before one brilliant doctor finally figured out what was the problem. It was the most frustrating year of my life.
My son will outgrow Laryngomalacia, probably when he’s around five or six years old if the doctors are right. I learned a lot from the experience though:
1. Trust your instinct. I knew he didn’t have asthma, and no matter how many doctors told me he did I kept saying there was something else going on.
2. Kids are hearty. My son wound up in the hospital, strapped to oxygen tubes and too exhausted to move. Now he’s a whirlwind of toddler activity.
3. You’re never alone. I had never heard of this condition in my life, but once I started talking to other moms about it I found that there are plenty of other kids with this condition. They all went through the same things my son did: improper diagnoses, frazzled parents, and hospitalizations.
My son is healthier this year than he was last year, and I’m hoping that each year is healthier and healthier for him until this whole debacle is nothing more than a distant memory. If your child gets this diagnosis then you can take comfort in knowing that you’re not the only one who has dealt with this, and if you’re like me you’re probably jumping for joy that a diagnosis was finally made.
tammy says...
My son was 2.5 months old when he was diagnosed with this and no one knew why is was retracting so bad and finaly someone told me. I was the same way knowing it was not asthma
Laurie says...
From the moment my daughter was born she had “noisy” breathing. Luckily our pediatrician immediatley recognized the sound and made the diaganosis. Unfortunatly she had a quite severe case and was hospitalized when she was seven days old. We spent 3 days in the NICU trying to control the respiratory distress. By the time she was a month old she had not gained a single pound and we were referred to Children’s Hospital Boston where she underwent surgery to allow the airway to open. We spent another week in the NICU. The surgery seemd to have been successful, but 10 days post-op the stridor and retractions returned and we headed to Boston again for a second surgery. Thankfully the second surgery was a success because we were told a trech tube was our next resort. After the second surgery she began gaining weight (with the help of the highest caloric diet possible) and the stridor and retractions were minimal. She is now 20 months old and healthy. We sometimes still hear the stridor when she is tired or has been running around for too long. We are so thankful for our doctors and technology because without either she may have literally wasted away.