Julie, have you considered calling someone else onto the "team?" 
Because there are several red flags (including issues beyond lactation)
plus confounding personal issues, I would suggest that the family seek
a second medical opinion.  



Since I know you are in the Salt Lake area you could refer to Jay
Moreland and then ring him up yourself.  I feel I've "met" this
father myself a few times and I have found it useful to draw others
onto the team I know to be competent and supportive.  Jay may be
able to direct you further (in terms of referrals).  Your
challenge already reaches past overlapping lactation issues.  As
you say, the dad wants to see agreement and a path forward.



Are there other physicians on this list in the Salt Lake City, Utah
area who have experience with the described symptoms and a strong
interest in supporting breastfeeding?  If so I hope you will post
to this list and/or contact Julie -- and me -- privately.



Good luck,, Julie!  I hope you will post your progress and update me privately.



Susan Johnson MFA, IBCLC, RLC

Thuwal, KSA

Salt Lake City, Utah, USA

(living in two worlds for a few years)





-----



I
saw a baby yesterday and I need some more insight to several issues.
One of them is this 40 week old baby born in a birthing center with a
certified midwife. Mom said right from the beginning that she didn't
have any milk and midwife took her word on it. I have been an IBCLC for
6 years now and really truly have only seen a handful of women who did
not make enough milk for their babies. So I was hopeful. I did a
private consult in their home. Dad is the most extreme micromanager and
had to be on the phone and listen to everything and then re-primanded
mom for not doing things that I had suggested. Dad is issue number
two.  So anyways, baby has a classic tongue tie. You see the membrane
keeping some of the tip of the tongue down. This baby had not pooped in
the last 24 hours. This is baby is exactly 48 hours old. This baby also
has buck teeth. Two pearly whites up on top and the upper lip is curled
up exposing these teeth and looks much like a cleft lip. I could not do
a suck exam because I ran out of gloves. The palate was one of the
strangest and highest palates in my lactation history. This baby also
seems to have a lower receded jaw but not too obvious. Also I remember
reading on lactnet years ago about a certain syndrome where the baby
will have  a very large spaced philtrum (the space between the upper
lip and nose) This baby would not latch onto the breast tightly. We
could not get this baby interested in sucking. The parents were only
feeding this 8.6 pound baby about 5-7 ccs via  feeding tube instructed
by the midwife. I insisted they feed more to this baby and thought this
baby was not eating due to not enough calories so I instructed finger
feeding at least an ounce with ABM since we were only able to express
three drops of colostrum at 48 hours out. So, I have been researching
and found pierre robin syndrome. One of the symptoms of pierre robin
syndrome is that the baby will have a cleft palate or a soft cleft
palate but I am not certain this baby has a soft cleft because I could
not do a suck assessment. And I don't know who to send the baby too who
will know what they are looking for.  



This dad is such an
extreme case of someone who wants complete control. He is not abusive
but needs to know the how, what, where and when and lets fix this now
kind of guy. No patience. I walked in to their home and there were 10
books on natural childbirth sitting on their coffee table and I praised
mom for wanting all the info she can get and the dad interrupted and
said they were his books and his research. 



I have no follow
visit scheduled because at our last visit I told them to call me in a
few days but since then they went to the pediatrician who doesn't want
to clip the frenelum and wants the parents to just bottle feed until
further notice. The dad was miffed after the doctors at either me or
the doctor because we were both on opposite sides of what to do for
this baby. Which turned dads world upside down. 



Do you think
it could be pierre robin syndrome? Something else going on and should I
call the pediatarician, this dad, this mom? Who and what should I do at
this point? 



Thanks for any and all input because you all are
so insightful and helpful in all the cases I presented in the past. I
am just in a pickle here. I want to protect this baby especially if it
is Pierre Robin then this is potentially life threatening for the baby
and I need to educate the parents or refer them to someone who will
know how to care for this baby. However, if I am wrong in anyway this
dad is going to let me have it.  




      

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