Friday, May 31, 2013

Living with Laryngomalacia


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. 


  1. OH my sweet friend, you are such an encouragement!

    Sweet momma friend. Your are an encouragement to me and countless others. Thanks for splashing us all by joining our momma notes. We would love to have you link up again, with this or another post.

    Mondays ... join the melody

    And I know the filled to the brim momma schedules ... so join us any day of the week and link up, add your voice.


  2. Thank you so much, I'm the mom out in cyberland that's really struggling with my son with laryngomalacia (he's also a preemie) and your post helped me. Sometimes I ask God why b/c it's like being in a hamster wheel pumping and feeding him constantly (he can't nurse). Where is the light at the end of the tunnel? Thanks for sharing. I really hope that this too will pass...

    1. Oh, I'm so glad that this post was helpful for someone! Take courage. My little guy is almost 18 months old, running around, and into everything. I'm missing those days when he would just sit in his (propped up) bouncy seat. This too shall pass...and looking back, it will seem like a flash. Blessings. :)

  3. Thank you for this practical advice. Now i have a plan for bringing my precious little girl to church. Thank you for the encouragement 😇

  4. My 4th month old was also diagnosed. Ihe is growing welk but the squeeking & congestion sound has me on edge constantly. I have sat up every night since he was 2 weeks old holding him snd listening to him breathe, sleeping maybe 2 hours a night. Back and forth to ER just for piece of mind. They keep saying he will outgrow it by 2 but that seems like forever. I to get alot of stsres and questions. Strangers and family telling me I need to get yet another opinion. This is my 4th child & the only one I carried full term. Yet the othets were healthy. I am praying for my light at the end of the tunnel!

  5. Hello. I came across your blog and would really like to connect with you. I have a son with laryngomalacia too. You can contact me at I hope all is well