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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