Deb writes:

I asked  mom if she makes that sound a lot and mom said, "Yes, all the 
time."  Mom  said baby never turns blue.  Mom said that the Pedi (which she had 
seen  the same day she saw me) said that both the babies were doing great 
and mom  didn't need to return for a month.  I gave the parents info about 
paced  bottle feeding and taught them about watching their baby's cues  etc.




~~~ First off, congratulations on your IBCLC and 3rd client. :)
 My approach to laryngomalacia/tracheomalacia is to work with what the  
parents are already seeing or wondering about. If these babies tire easily, 
need  breathing breaks, families usually notice this and wonder why their baby 
is so  "hard" to feed, or takes a long time, etc. Asking about the noise, 
and them  confirming it, is your opening to talk about what that sound usually 
is. The  fact that the baby doesn't turn blue is good of course and that is 
usually why a  pediatrician won't mention it even if they notice it. They 
seem to want to  reassure parents that their baby is fine and normal. I 
usually say that this is  something doctors say is normal  ( it isn't 'normal', 
but it can be common  especially when babies are early, and I always say I 
agree with the doctor that  this is not a major medical issue so a medical 
doctor may not discuss it,) when  what they seem to mean is it is often noted 
in babies who come early ( or may be  fullterm but have tongue-tie) and there 
is nothing to do about it medically, the  baby outgrows it in time. That 
said, I also let parents know that even though it  is not a "big deal" it is a 
subtle thing that as an IBCLC I want them to know  about because it can 
affect how a baby feeds, their ability to breathe at rest  may be fine, but 
when they need to coordinate breathing with feeding/flow it can  be a 
challenge. The baby needs what you have already provided: parents who  understand 
what is going on, and what it might look like or sound like, the  upright 
positioning, the self-pacing or parent-responsive pacing if the baby is  so 
desperate to eat they need to learn there will be food available if they take  a 
break they need, and patience if feeds take longer,  and if it takes  longer 
to help these babies to breast, depending on how mild or moderate the  
issue is. I also share that if the noise gets louder that does not mean things  
are getting worse, but that the baby's breath power is stronger than before, 
so  they can make a louder sound. If they look online, they will probably 
scare  themselves half to death with youtube videos of babies with very 
severe issues,  so I tell them this is NOT their baby. It's a fine line, 
educating parents about  something that's often been ignored or kept in silence by 
every other  professional they've seen. I've gotten yelled at my MDs: "why 
did you tell the  parents that, you're just scaring them." I tell parents I 
think they are smart  and interested and observant and most WANT to know what 
the noise is and  how it may or may not affect things. 
I hope that helps.
 
Peace,
Judy  

Judy LeVan  Fram, PT, IBCLC, LLLL
Brooklyn, NY,  USA
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