I recently was involved with an infant with similar behavior that has now
been diagnosed as having Williams Syndrome. It was a long and difficult
road but the breastfeeding history was important to an early
diagnosis.  Early diagnosis is critical to avoiding the results of early
nutrient deficiency. In this case (apparently typical) the motility of the
gut is so slow that the child does not experience hunger despite being
severely nutrient deficient.  Definitely NOT a child that can be fed on
demand. In the early weeks it looked normal but just was uninterested in
eating and would not take much volume when it did feed.
Another recent case was an infant with a rare mitochondrial disease.
Transfer was difficult. Infant silently aspirating, feeding was a struggle
and unpleasant for all concerned. Mom was experienced and had previously
successfully fed a child into toddlerhood but was very young. From day one
this teen mom insisted their was something wrong despite having a lovely
large full term child with no obvious difficulties.
Both cases have made me especially cautious around children who may in the
first weeks postpartum look to be within the normal range but who have
'odd' feeding difficulties. It was another reminder to really listen to the
moms. Just because something is rare doesn't mean it doesn't exist.

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