Daniele,
I have been working with a baby with Prader-Willi syndrome who was also
born very preterm and had an intraventricular hemmorage (bleeding into
her brain) that damaged her ability to swallow.  She has gotten much,
much better with time.  We started by fingerfeeding her with a
peridontal syringe (a syringe with a curved, narrow tip that allows very
precise placement of a tiny drop of milk on the baby's tongue).  I fed
very slowly, one tiny drop every few seconds until she learned to
swallow and not aspirate (get it into her lungs).  Once she could take a
few swallows this way, we tried the Haberman feeder.  The first time she
was able to take only 3cc before having bradycardia (dangerously slow
heart rate).

Babies with Pierre Robin syndrome sometimes feed better in prone.  If
you use a tube or syringe to fingerfeed, you can place the baby prone to
feed.  This generally helps breathing and swallowing.  I would be happy
to email you a photo if you like of this being done with an SNS for a
baby with laryngomalacia (an airway malformation).

Babies do improve their swallowing with practice.  Good luck to you as
you work with this mother and baby.
Catherine Watson Genna, BS, IBCLC  NYC

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