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Wed, 29 Nov 1995 07:59:36 -0500 |
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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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