In some ways, pondering if breastmillk is "enough" for this child skirts
the most important questions regarding this little one with oral aversion.
What if breastmilk "isn't enough?" Given the current situation as you've
described, there is no way to supplement via tube, and pressure for oral
intake will most likely make the oral aversion worse, and complicate the act
of eating with all sorts of power and autonomy issues(age-appropriate for
this child, but best dealt with outside of the arena of eating.)
And if breastmilk is "enough", it still doesn't address this child's crying
need for his oral aversion to be expertly addressed. This means by rehab
therapists and dieticians who deal with these issues all the time and have a
vast body of experience and current research under their belts. I say this
because I've seen kids like this get kind of the short end of the stick,
treated by inexperienced (new graduates) folks or by folks who only see cases
like this as a small part of their caseload, and haven't developed the
knowledge base or skills needed to truly give the child the best care.
Of course, the very best would be for this kid to get a PEG tube(way more
comfortable and not visible) and for nutrition to be addressed via tube,
whilst *eating* gets handled in a relaxed manner, since all are assured that
the child's nutritional needs are being taken care of, ( and can continue to
be taken care of) until the child progresses to completely oral intake.
The parents may feel that getting a PEG means that people are giving up on
their child, when it's really just the opposite.
Again, Ellyn Satter, RD, writes very eloquently on the special needs of kids
like you've described. Some of her books are quite easy reads for the lay
person, especially, "How to get your Kid to Eat". Perhaps she can be a
resource for this family.
These parents probably need all the support they can get to refrain from
feeling/acting "urgent" about food/oral intake. I know I sure would!
Karen Kavesh in Philadelphia, remembering my years treating kids with
swallowing and feeding disorders, somewhat relieved to be away from it for
now.
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