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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