R in CHARGE

[Guest guest]

,

The " R " got put in back in 1981 because it made a cute word. The

acronym has not been the best way to make a diagnosis of CHARGE for

many, many years. In fact, it was never all that helpful. In addition

to the " R " not being helpful (what child with all those issues going on

is NOT " delayed " ?), the " H " isn't helpful. That is, yes, the majority

of kids with CHARGE have heart defects, but the presence of a heart

defect isn't very helpful in figuring out if the child has CHARGE or

some other multiple anomaly syndrome. And cranial nerve issues

(feeding, facial palsy, etc.) aren't covered at all by the acronym - a

fact mentioned in the 1981 paper!

We tried to get rid of the " R " (or at least change it to retardation of

GROWTH) when we published revised diagnostic criteria in 1998. To see

those criteria, go to the CHARGE Syndrome Foundation website at

www.chargesyndrome.org

oh, and one additional comment on the ears - they actually often are NOT

easy to fix. Because of the floppy cartilage, it is in fact a

significant challenge to plastic surgeons when they do try to " fix "

them. I think most of the time the " fix " is to get an ear that will

keep a hearing aid in, not for cosmetic reasons. I don't have a child

with CHARGE, but I think the ears are adorable and part of the whole kid.

Meg