Hi All,

 

Wow did I get a doozy today.  Baby is 20 days old and just now back to
exactly birth weight.  Mom saw a different LC on day 9 who found a baby at a
10% weight loss, got baby feeding (mostly bottle as baby still could not
latch well on a nipple shield and would not latch without) and mom pumping
to stabilize her supply.  (You are on this list – thank you!  You helped her
a lot by protecting her milk supply and baby!)  Mom chose to see me as I am
more local to her (10 minutes from her house!).  I have her permission to
post.

 

So – a lot of stuff here.  Baby born at 38 wks weighed in at 7’ 1”.  Baby
was frank breech, born by C-sec and Dr’s discovered umbilical cord wrapped
twice around baby’s neck.  Baby had a cone head at birth. 

 

Baby never was able to latch at all – hosp nurses gave a nipple shield
telling her it would be the only way baby could get her colostrum.  Baby is
now completely unable to latch w/o it – but is unable to latch deeply and
well.  Baby has NO soft spot on back of head – cranial bones visibly overlap
in such a way that is obvious to even the untrained eye on all sides of
head.  Also the top of baby’s head is ever so slightly tilted over to the
left and the back of the head has a noticeable bump (one of the cranial
bones) and looks like ½ of a ball stuck to the back of the head.  Jaw
appears ever so slightly recessed – looks like he had a baby overbite...and
the right side of his jaw is a tad bit higher than the left.  Obviously
there are some real issues here – appropriate referrals for treatment have
been made.

 

Now for the really crazy stuff.  Baby has what might be a posterior tongue
tie – but I could not see anything notable about tongue movements with a
visual exam – no nothing, no real appearance of tongue stuck to the floor of
the mouth – but he wouldn’t stick his tongue out to the bottom lip.  Put
baby to breast – he sucks the breast as if it is a bottle.  He does not do
any compression to speak of.  Initially he appears confused as if he doesn’t
quite know that to do with this thing he just opened his mouth for (he does
this on the bottle too).  Finally, after fussing about a bit, he ‘gets it’
and starts sucking.  NOT suckling – but sucking – little cheeks sucking in –
looks like he is trying to suck a straw even when we were able to change the
latch and get him on a bit deeper.  He is able to get small amounts of milk
out with a LOT of effort.  He also has LOTS of penetration of milk and I
believe some aspiration – this kid got so noisy I gently asked mom to take
him off the breast as I was very concerned.  Once I saw what he was doing I
did a suck eval.  OMG!  I have never felt anything like this at all.  There
is very little peristaltic wave – baby clearly cannot and does not elevate
his tongue to do compressions – is that the possible tongue tie?  I am not
sure yet.  His suck swallow breathe pattern is bad, leading to penetration
and possible aspiration.  As long as I kept the milk flow slow he did not
have any penetration – however he tried to do the normal compressions for
maybe 3 sucks, but then he quit and started using suction only – all sucking
– no compressions.  It was the weirdest feeling.  The other thing that was
weird – it felt like this little boy had no soft palate – it was all hard!
Where the soft palate should be nice and soft and spongy – it was instead,
firm and felt bony and kinda bumpy like the hard palate.  I had my finger so
far in this boy’s mouth I was surprised.  He let me gently feel as far as I
could feel – no gag reflex, perfectly happy.  But also a hard soft palate.
I told mom I’d have to ask about this one as I have never felt anything like
this.

 

Now – my question is:  What the heck is this?  I see this baby having
several issues:  Possible posterior tongue tie, obvious physical issues,
obvious suck swallow breath issues and a palate (soft) that makes no sense
to me at all.  So – I have referred them to treatment for the body issues.
I figure once the body issues are corrected we can re-evaluate the possible
posterior T-T.  If that is an issue, get it clipped.  I am hoping that the
body issues are the cause of the SSB issues and that those will resolve with
correction of the body.  If not, we refer to a specialist for that too – no
problem.  Some of this he may grow out of – he seems to be a ‘young’ baby at
20 days even tho he was born at 38 wks…he still ‘feel’ to me to be premie.
But what about this palate?

 

So, Wise ones – what am I missing – what is it I don’t know that I need to?

 

Thanks for ALL input!

Warmly,

Jaye

 

 

 

 


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