Hi Julie
Pierre Robin sequence, it is not a syndrome, rather a group of symptoms often occurring together.
Primarily it is retrognathia (receded jaw) and a large u shaped cleft of the palate. These babies frequently have
respiratory issues due to the tongue's position as result of the receded jaw. Any baby with abnormalities
to the cleft should be referred to a Speech Language Therapist and/or Cleft Palate Team. In our part of
the world a speech therapist will do the assessment and then refer to the Cleft Palate Team. A baby with 
a cleft palate will not be able to suck from a standard bottle but will need a cleft lip and palate feeder or 
Haberman feeder as they need assisted feeding as it will be hard to create negative pressure
to remove milk from breast, bottle or via fingerfeeding. If they are syringing it in during fingerfeeding
that is different, i.e. assisted feeding,  but it sounds as if this baby is not taking much at all.  Baby needs to
be fed, so I would say an urgent referral to a paediatrician, speech therapist and cleft lip and palate team.
Even if it is not Pierre Robin, an unusual palate needs to be looked at and if it is submucosal as well.
There may be an upper lip frenulum as well hence the appearance. The pearly whites as far as I know can at 
times occur.
Hope this helps.

Loraine Hamm
SLT/IBCLC
New Zealand 

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