This baby is not gaining weight because he's working so hard to breathe that
he's burning up his calories.  Don't let anyone blame the quality of mom's
breastmilk for his lack of growth.  Basically, tracheomalasia is a narrowing
of the windpipe, resulting in difficulty with his respirations.
Unfortunately, many times the first thing to be blamed is the quality of
mom's milk and then the baby gets changed to a "special formula".  Some
babies will eventually outgrow this condition on their own while others will
need a tracheostomy to assist with breathing and with oxygenating their
bodies.  I worked a lot of years in NICU and once upon a time was a head
nurse for a small unit of trached babies, most caused by tracheomalasia.  So,
providing mom with the usual advice for growth may not cause him to gain
weight due to his respiratory condition.  I'd offer her lots of emotional
support for her to understand that in the event he struggles to gain weight,
as is happening presently, that it's not as a result of her or her
breastmilk.  She needs to understand this difference.  Then I'd assess him at
the breast for any respiratory distress (is this out of the scope of
lactation?  yet, a part thereof?) (another whole discussion, I know), and I'd
assess his volume of intake at the breast using the BabyWeigh Scale, and I'd
assess mom's milk supply. His inadequate weight gain, though primarily
related to his condition, could also be contributed by lack of adequate
intake or lack of adequate volume.
Hope this helps!
Carol Chamblin, RN, MS, IBCLC
Breast 'N Baby Lactation Services, Inc.
Geneva, IL

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