I have been working with a mom and baby for four months because of
suck/swallow problems.  Baby never learned to latch on and nurse
effectively.  He was born at 34 weeks with low-set ears, bulging eyes,
SGA,VSD, but no clear syndrome to help figure out what was going on.
His mother has been committed to giving him breastmilk for the entire
first year and now has a dwindling milk supply which may be attributed
to stress.  He requires feeding every three hours partly by bottle with
a soft nipple and partly by NG tube on a syringe pump.  The NG is
becoming difficult to maintain and he will have a G-tube placed soon.

Recently they got the results of testing that diagnosed him with
agenesis of the corpus callosum.  All his feeding problems are linked to
this, according to what the mom has been able to find out.

Has anyone ever worked with such a child?  Do you have suggestions for
this mother?  We are working on building up her supply again; that is
not an issue.  She is just searching for someone who has any information
about this problem.  Docs say he could have anything from a learning
disability to severe retardation. I am concerned that this may be a
situation of severe problems because, so far, other than slow weight
gain, he is not making any progress at passing milestones.  He gets
speech therapy and physical therapy, but we are not seeing progress.

Any help would be appreciated.

Diane Perrone, RNC,BS
Materna Wellborn Home Services
Algonquin   IL   USA

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