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Aspiration is very common when a baby has any issues with the tongue,
including tongue tie and disorganized tongue movements. Suck/swallow is
a cascade of fairly complex movements, all of which need to be properly
executed and timed to avoid disrupting the next movement in line. The
first "sign" of aspiration in this baby was the congestion, the second
was likely the feeding refusal.
Rhoda mentions mitochondrial disorders. Babies with mitochondrial
disorders have very little energy and stamina. Even breathing can seem
like too much work for these babies. Their skills also tend to
deteriorate more than usual as they become fatigued.
There are many other genetic syndromes that can be associated with the
issues you describe. The baby should see a geneticist, unless the
neurologist is confident that this is a birth injury or prenatal insult.
(The placental abruption could have deprived the baby of oxygen). I
recently saw a little one who had bilateral brain damage that occured
the day before she was born. Mom just noticed the baby stopped moving,
and went to the hospital, where they induced her. It was obvious she was
floppy at birth, and they did an MRI, and saw the damage. Baby is very
difficult to feed, has tremors after a few sucks, no matter how she was
fed. Only had a few trials on the breast, but transferred zero. She is
receiving early intervention.
Babies with neurological issues do improve with time and therapy. If you
are able to carefully notice everything the baby does at breast that is
different from what a neurotypical infant does at breast, you might find
some things to work on. Some possibilities include:
cheek and/or jaw support - Cheek support generally works best if there
is a little forward (toward the tongue tip) traction applied.
"walking back on the tongue" - providing vibration from a finger
starting at the tongue tip and moving back in tiny increments to help
the tongue realize what it needs to do in peristalsis.
upright positioning of the baby to help with bolus handling (try a
straddle position if the baby's tonal issues allow.)
Other good books in addition to the excellent one by Wolf and Glass that
you've already ordered include both editions of PreFeeding Skills by
Marsha Dunn Klein and Suzanne Evans Morris (also published by Therapy
Skill Builders). There is also a classic article by Dr. McBride and
Sarah Coulter Danner on Breastfeeding Neurologicallly Impaired infants
(some of the info is dated now, but much is helpful).
Good luck! This mom is so lucky to have you, even if you only provide
consistent support and validation of her concerns.
Catherine Watson Genna, IBCLC NYC
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