Dear Lactnetters
I was called to a very difficult situation four and a half months ago when
hospital staff were unable to attach a baby to the breast or even to have
the baby feed from a bottle and teat.   I'm not sure how much detail to
give you... The baby was 38 week gestation, normal delivery, weighing
3.1kgs with "bilateral talipes equine varus deformities" as well as a
"downturned mouth". (Within the first 24 hours she had plasters applied for
her club feet.) I noted a marked startle reflex, and rolling back of eyes,
no obvious rooting response,  appeared unable to open her mouth,no drop of
the lower jaw, unusual cry,  tongue appeared to becoming forward but its
movement  made attempts to attach difficult - however  I discovered that
once we could 'manoever' the breast tissue into her mouth, she then
miraculously gained a suck/swallow pattern.  By the time the mother went
home she was attaching with various degrees of difficulty or using the
Haberman feeder. At the time I queried a depressed sucking reflex
associated with a nervous system problem. No investigation was carried out
till the paediatrician  had blood studies done at six weeks including
chromosome karyotyping. By this time she was fully breastfeeding.   At this
stage a vision problem was apparent. It is now obvious that she does not
track sideways.   Another referral, this time to a paediatric neurologist
has just suggested moebius syndrome, (a stroke in utero) 6th & 7th cranial
nerves affected and possibly 9th & 10th. but an MRI scan has yet to be
done.  The mother says the baby is spilling more  which is worrying her. (?
reflux or problem with swallowing - not apparent when younger).  She has
been instructed to commence giving solids as he wants to assess her
swallowing (possibly with a barium swallow).  She is gaining weight well,
taking objects to her mouth, investigates her mouth with her hands, and
rolls (with her plasters!) she does not vocalise well but tries, and does
not smile.
I would like to know if anyone has known of a  baby (possibly breastfed)
with this syndrome and how the situation (especially if breastfed) was
handled.  Also I wonder if ultrasound of the baby swallowing at the breast
is an option that could be requested rather  than solids being introduced
at this age. However I would like to know if gaining the assessment by
commencing with "baby rice" is of more benefit and may  improve the future
outcome getting her started now rather than later.   Any suggestions or
sources of information would be appreciated as this mother has done so
extremely well.
I still need to go elsewhere to receive my email (computer problem) so am
still nomail, so personal replies would be appreciated and I will share the
outcome later if it is of interest.
Rachel Walker Breastfeeding Connection Christchurch New Zealand
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