My friend's baby that had/has heart prob.s, kidney & liver prob.s, and abnormal
EEG has now been diagnosed as having DiGeorge syndrome - missing a piece of
one of the 22nd chromosomes.  DiGeorge involves an interrupted aortic arch
(repaired surgically a week ago), no thymus gland, a parathyroid with impaired
function, calcium metabolism problems, and a few other minor structural
abnormalities (low-set ears, for example).

The thymus and parathyroid problems cause a BIG problem with the immune
system.

Breastfeeding will obviously be best!   I (and she) would love to hear from
anyone who has experience either as a parent or as a resource for children with
this disorder.   Are there any breastfeeding tricks that she will need to know?
And what about the missing thymus and the long-chain triglycerides -- if there
is no thymus (not just a surgical removal), would that be a concern?

The baby looks wonderful, especially compared to how she looked a week ago
before the surgery.  She's alert, moving around, trying to pull tubes and
lines...  Just a world of difference.  Mom should be able to start trying to
nurse today.  Baby has been on respirator for 3 weeks now, and only had 2 days
of not-so-good-nursing before going into the hospital, so getting nursing
well-established might be a long process.
Beth Hilleke
2425 Spring Garden St.
Charleston, SC 29414-5535
803-556-6131
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