Cynthia,
Holoprosencephaly is a failure of the forebrain to split into two
hemispheres, so that one large cerebral hemisphere is formed, with one
large ventricle.  The olfactory (smell processing) portions of the brain
do not develop, so neither do the nasal portions of the face (the
nose).  As the development of the nose stops the eyes from merging,
absence of a nose may also cause the formation of a single eye, which is
called cyclopsia.  Depending on the severity, the baby might not be able
to nurse because he might not be able to breathe except through his
mouth.  This disorder is sometimes associated with rare trisomies (an
extra copy of a chromosome in each cell.  A common trisomy causes Down
syndrome).  Alobar means without lobes, this might mean that the frontal
areas of the brain are totally missing, but it could also mean that all
the usual lobes of the cerebrum are merged into one.
        Perhaps this mom can be referred for genetic counseling to help prepare
her for what to expect when her son is born.  You might encourage her to
come up with a plan for each possible outcome, and have it in writing so
the medical staff can cooperate with her wishes.  If he can't
breastfeed, he could at least be cuddled to mom's breast.
        It might help this family to consider donating their son's organs after
his death so other babies might live.  Sometimes this can be some
comfort when a baby is born with catastrophic birth defects.
--
Catherine Watson Genna, IBCLC  NYC  mailto:[log in to unmask]