Clefts of the soft palate create really, really difficult feeding problems
in my experience.
They are less amenable than are clefts of the hard palate to successful use
of
an obturator because they occur so far back in
the mouth.  Obturators are formed after a pedodontist or someone skilled in
prosthesis making takes an impression by using a plaster mold.  Then the
plate (made of a combination of hard and soft plastic) is shaped from the
model of the mouth.  I've been told that it is hard to make the impression
when the defect is so
far back (due to concerns about blocking the airways during the making of
the model, getting back far enough, etc).

If the baby lacks a soft palate (which is an important muscle for feeding)
several functions are quite compromised.  Think about what the soft palate
does.  With the tongue, it forms a valve that can seal off the oral cavity
until a swallow is initiated. This has implications in the baby's ability to
generate negative
pressure (suction). During swallowing, the soft palate elevates and seals
off
the nasopharynx to keep food from aspirating up into the nose.  The
epiglottis is part of the
soft palate.  If it is missing, there is nothing to fold down to seal the
larynx and the lungs against entry of food.  The muscles of the palate play
a role in controlling the muscles that ventilate the eustachian tubes.
Impairment of the ventilatory capacity plays a huge role in build up of
fluid and progression to otitis media in infants with clefts.

While it is critical to exclusively feed human milk to infants with clefts
(so that they don't have chronic respiratory disease and ear infections)  it
is NOT easy to feed these babies by ANY method due to the functional
deficits described above.  As babies get older, they sometimes improve their
capacity
to compensate, but the pumping is pretty critical because they often cannot
stimulate a full supply, and many young babies can't obtain a full feed
before becoming exhausted.  Then they don't grow well.

It is often hard to know how best to support the parents.  Moms need a lot
of
support to continue, and it is common for them to told to perservere by
people who really don't understand the physiological challanges created by
the condition. This can lead to feelings of failure and burnout.  It's not
that you shouldn't encourage the mom and to try to help with strategies. But
cheerleading in the absence of understanding is likely to backfire and can
create a situation where the mom starts to think:  "these people have no
idea what I am really experiencing."

Barbara Wilson-Clay BSEd, IBCLC
Austin Lactation Associates
http://www.lactnews.com


Barbara Wilson-Clay BSEd, IBCLC
Austin Lactation Associates
http://www.lactnews.com

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