Marge-I recently worked with a baby with laryngeal malacia.  Presented
as a failure to thrive.  When the feeding was observed the following
problems were noted: stidor, suprasternal and substernal retractions,
pulling off the breast for catch up breathing.  The baby had the same
difficulty on the bottle.  The suck pattern would fall apart as the air
hunger worsened.  Sounds like the little one your working with is in even
more distress as evidenced by cyanosis during feeds.  In regard to how
to help--I found the baby's distress worsened with a higher flow of milk.
Our baby was referred to a pediatric ENT at  our facility, and 2 surgeries
were done to correct the problem.  The baby is now gaining weight,
breastfeeding and feeling much better.  I understand this surgery is
somewhat new.  You mentioned the father was an MD.  Perhaps he may
not be aware of the recent advances in this area.  If surgery is not the
appropriate option for this baby,  mother could pump the majority of milk
from the breasts, then put the baby to breast while being gavage fed.  I
understand babies can outgrow laryngeal malacia--problem with the
baby I was helping was no growth.

This is a difficult situation.  You mentioned the baby screams and is
frustrated during feeds, but enjoys the pacifier(no flow ).  I worry about
the baby developing a negative association with feeding and the breast.
The gavage tube option may allow the baby to enjoy the breast, grow
and be comfortable.

If more information re: the surgical proceedure is needed,  send me an
e-mail with your phone # and I'll give you a call.

Laura Wham, RN, IBCLC
Primary Children's Medical Center
Salt Lake City, Utah