A new member

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Hi all.

This is Henry. We have a baby boy, , just 70 days old diagosed

with CHARGE. He has airway problem, floppy airway makes him breading

very hard; his vocal cord does not function well, and cannot protect

his airway. He also has swallowing problem. So he has to fed be via

G-tube.His right ear is malformed and has hearing lossin both ears

(but not totally deaf). He has facial palsy and heart defect (PDA)

too. However, his eyes seem ok, though we don't know how good his

vision is. And he does not have atresia of choanae.

Right now is doing pretty well, he can bread on his own. He's

gaining weight nicely, now he's 11 pounds 11 ounces. We also try to

feed his through mouth. He likes to suck milk but has difficult to

swallow. We are afraid the food may go to his lungs so we keep this

oral feeding practice just sympolic.

My questions to people might have opinions:

1. Is CHARGE baby inevitably going to be mentally retarded ?

2. Since lacks some major features of CHARGE, what is the

chance this diagnose was wrong ?

3. Can we feed him orally eventually ? How long would it take for

that

to happen ?

4. What kind therapies might help him learn to speak, hear, and see ?

Thank you in advance.

Henry