Living with Laryngomalacia

Laryngoma...what?

Yeah, that was my first reaction when Ransom was diagnosed by an ENT with this condition at about 2 months old in 2011.   His case was relatively mild and the noisy breathing began to subside around 6 months and now at 2 years old, is mostly gone.  I still hear it occasionally when he is concentrating on a toy or puzzle but for all intensive purposes, it is gone.

Laryngomalacia is a lazy flap near the voice box.  In most cases it is harmless but can be very scary.

What we didn't know about this condition is that it's inherited and tends to run in families.  Looking back, I believe that one of my older kids had a mild version of this as we could always feel vibrating in his back when he was breathing.  I remember friends being concerned and asking if he was congested.  Our pediatrician at the time (different from our current pedi) only said that his lungs were clear but never suggested anything else.

When Timmy began making squeaky noises around two weeks, I didn't even think of laryngomalasia as I had done little research on the condition and still didn't understand that it runs in families.  At about four weeks he was struggling.  He would have short moments of apnea at which times his nostrils would flare (a sign that I knew to signify breathing difficulty) and his little arms would flail with the startle reflex.  My pediatrician told us he probably had laryngomalacia and to get an appointment with the ENT.  But, that weekend, before we were able to get in to see the ENT, he seemed to decline.  He was exhibiting all of the above symptoms but was also retracting.  We decided to go straight to the ER.  I called our pediatrician as I was buckling Timmy into his car seat and he agreed with our decision to go to the ER.  Once at the ER, none of the doctors had heard of this condition and they were not very willing to believe me.  They wanted to administer steroids and I told them I wanted them to call our pedi first because I was pretty sure he didn't need them.  Then they grilled me about the possibility of him having an object lodged in his throat.  At times it seemed more like an interrogation.  I told them that he has been making this noise for at least two weeks so I doubt it is an object but I was willing to have an x-ray done just in case.  They then wanted to do a test for RSV.  All the while, I kept asking them if we could check out laryngomalasia as I was pretty sure this was the issue.  Well, the ENT on call did not want to come to the hospital as there was no "emergency" but none of the ER doctors were comfortable sending us home either.  So, we were admitted.  This whole process was difficult and, as a mom, I am leery of refusing any medical treatment because of the horror stories of babies being taken away...and we have seven kids...and we homeschool...and we take a postponed immunization route.  So, we aren't exactly a normal American family...haha.
The next day, the ENT came and scoped Timmy through the nasal passage and confirmed that it was laryngomalasia.  He released us to go home.
We kept Timmy on an oxygen monitor for about a week to insure his levels were staying up.  They were.  There is no risk free fix for laryngomalacia.    Surgery is an option for "failure to thrive" babies but comes with significant risks.  Even beyond the normal risks of surgery there is the risk of damaging the voice box.  Timmy is definitely not failing to thrive and we do not want to take the risks so we are waiting it out.  By six months we hope to see improvement and for him to be totally free from breathing issues by eighteen months.  Meanwhile we are having to retrain ourselves just a bit.  I have always known that when a baby or child is retracting, it's time to go to the pediatrician.  But, Timmy retracts every day of his life.  He is going to have some very strong lungs:)

We are getting just a taste of what it must be like to have a child with special needs.  Everywhere we go, people stare.  They aren't trying to be rude, but mostly I think people are concerned.  It sounds concerning!  We are often asked if he is okay and I have already grown tired of explaining so I usually just smile and say that he is fine.  I had a Costco employee ask me if Timmy has asthma and wanted to let me know that he wasn't breathing well. 
This truly has changed our lives for a season.  We no longer take him places where silence is needed like a theater.  After worship at church, I take him out to the nursing mom's room as the noise is terribly distracting to those around us.

I am learning to see parents of special needs children in a whole different light and to be grateful for the fact that six of our children did not struggle in their early months.  I am also grateful that Timmy's laryngolamacia doesn't require surgery.   I am amazed at how a trial can create such a heart of gratitude in me.  But, I think gratefulness is the thing that I have learned most during this time.  I have SO much gratitude in my heart and looking at life just a bit differently:)

I share this story in the hopes that somewhere out there in cyberland, there is some mom worried about her baby with laryngomalacia that can be comforted by knowing that others have walked this same path.  And, that this too shall pass.