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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