Hi all, 

Really need some help with next steps..........

Permission to post.  Healthy mom/pregnancy, p1 g1, normal home birth.  Baby 
girl, BW 6-10.  1st saw them very early on, ~18hrs pp on recommendation of 
midwife.  Baby had not latched in spite of lots of skin to skin, appropriate 
encouragement/suppport from midwives and doula.  Watched mom and baby 
together, tried to vary position to support latch, mom had already tried a 
nipple shield (given by doula!) so we tried that too though normally I wouldn't 
so soon.  Knew there would be challenges as soon as I saw babe.  Parents 
were already calling her the "chinless wonder" - they were expecting a baby 
with a receding chin as both mom and dad and all 4 grandparents had this 
trait!  I spent a good deal of time with the parents talking to them, gently 
explaining that a short jaw/receeding chin could be an impediment to easy 
breastfeeding and may be a peice of the not yet leatching puzzle.  
Visual/digital examination confirmed a tongue tie.  Baby had a tiny tiny mouth 
and kind of a floppy (?) soft palate, high arched hard palate, gagged easily.  I 
looked and looked but couldn't see a cleft of the soft palate (not ruling out 
submucosal), wondered about Pierre Robin syndrome........ Upper labial 
frenulum was also very tight.
Got mom started with a good pump and hand expressing, discussed possible 
feeding options and skin to skin as well as options for releasing the tongue 
tie.  Oh! just to make it more challenging - mom had inverted nipples though 
that was not certainly unfortunate and not helpful it was almost least of the 
worries as I expected them to come out a bit with pumping and with nursing, 
if necessary, with a shield in place as well as/or getting babe on deep deep 
deep.  Remember this is all 18hours after delivery.  Parents went to 1st local 
doc who would see them for release of TT.  This is not my favourite dr - he 
clipped 1mm and then said he could go no further without damaging the baby 
as frenulum was thick and fiborous (um - that's kind of the point! arggg!).  
Saw family again - still no luck though baby was still keen and mom had 
developed a good supply.  Mom focused on growing that little mouth/jaw, 
maintaining supply, skin to skin, etc.  I encouraged them to consider further 
treatment; deeper release of still existing TT, CST, chiro, and got baby on 
haberman to help with using tongue/jaw as much as possible, discussed paced 
feeds.  Mom comments that baby is mucosy and wheezy.  We discuss 
different positions for helping with airway.  I observe a bottle feeding, there is 
stridor.  On haberman it is obvious that tongue is tucked back instead of 
cupping teat as I can hear the sound of the silicone sticking together and 
popping apart as her gums bite down on it with every "suck".  More teaching 
but kid just can't do otherwise, lots of compensating! Soooo at just over 5wks 
mom and dad finally take baby to ped dental surgeon who uses lazer (they 
actually left the country to do it!) to release tongue and upper labial frenulum. 
Now babe will comfort suck with shield, especially if mom is lying down.  She 
has never independantly removed milk from the breast.  We have filled the 
shield and even used a tube at breast.  No latch w/o shield.  Mom feels 
pinching even with shield.  Tongue still tucked back on bottle (I feel this is to 
protect airway).  Suggested finger feeding so mom could manipulate tongue 
very gently with traction to get it down and out - babe can cup tongue now 
but mom reports that finger feeding took an hour for 30ml!  Mom said 
she "moved" finger - I am guessing she pulled it forward so baby could go back 
to usual feeding - and she took another 30mls in 15min.  She can down 
~100mls from a haberman or bottle in less than 5min with her usual feeding 
behavious if parents aren't pacing carefully.  They don't insist on tongue down 
and out for feeds as it is so distressing and slow for all.  SO NOW WHAT?  I 
suggested prone feeding, do I ask for a swallow study? Is it a matter of gentle 
teaching and reinforcement for babe to learn to BF?  I am a bit stuck. I have 
worked with several much older babies (24 wk prem w brain damage who BF at 
10m, 8 and 9m adopted babies, TT babies who had TT released later) who 
learned to BF but this has me stuck.  Thank goodness for Cathy W-G's 
wonderful book.  Are you out there Cathy?? Babe is still rooting and willing.  
Mom is heartsick.

Any ideas welcome!

thanks 

Beth McMillan IBCLC

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