Dear Karen
While working with a mother about a year ago in Tokyo we had an unusual
collection of similar sounding symptoms in a new born. At rest his face
looked normal, but when he cried one side of his mouth didn't move at all.
He had many breastfeeding difficulties which we considered might have been
related to submucosal clefts/frenulum limitations etc, and the dancer hand
position helped maintain a seal, as did using a finger/breast tissue to
block the gap as per a cleft lip. But the doctors here resisted the
suggestion that anything was wrong, and ruled out clefts. Subsequent
research on our part led us to look for a while at assymetric crying facies,
and various other syndromes which presented with this sort of facial palsy.
ACF sometimes presents with cardiac problems as well, and is a fairly rare
genetic disorder. In this baby's case it was hard to persuade the doctors to
carry out any genetic testing at all, but they did say there was nothing
wrong with the baby's heart.
The mother went on to have great difficulties with feeding, even when giving
expressed milk by bottle, as the baby appeared to sometimes aspirate the
milk. Short frequent feeds of EBM by bottle were what the mother chose to do
in order to control both the amount and speed of baby's intake, as he was
not very effective at the breast. Mother pumped about 8 to 10 times a day.
She refused a Haberman.
She subsequently returned to her home in the US for thorough testing and as
we had suspected all along, the baby has a rare syndrome. It is called
Moebius syndrome, a disorder that may have a number of different causes and
is characterized by congenital facial paralysis present at birth. Facial
nerve development is absent or diminished causing abnormalities of the
facial muscles and jaw.
So I think as you mentioned, getting this Melbourne baby a
neurological/genetic assessment would be wise. Sorry I can't help on
suggestions of whom!

Best wishes
Iona Macnab IBCLC
Tokyo Japan

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