Actual Infor on CHARGE SYNDROME PLEASE .....?

Question

Have a Grand Nephew born March 24 jusat diagnosed with
CHARGE SYNDOME......and Actual EXPERIANCE and input
MUCH APPRECIATED ??

Answer 1

Hi there, our little baby girl was born with Charge Syndrome in August. She did not have any of the obvious physical defects like facial palsy and looked pretty much like a normal baby.

Instead, her Charge defects were more internal. She had several complex heart defects, grade IV kidney reflux and some vision and hearing loss.

It will entirely depend on each child as to how the syndrome will affect them. You will learn as your nephew begins to grow. Many of the tests they do in the first 6 months are not very accurate so don't let negative or disappointing results get you down. They can only predict at this point how your nephew will see, hear, learn, move about, etc.

What is crucial at this point is to keep an open mind and just shower the little boy with love and encouragement. Find out what you can about his abilities now so you can "capitalize" on them. Children with Charge live very active and full lives, and most achieve normal learning ability with support and early intervention.

Depending on what types of defects your nephew has, he might have some surgeries in his first years. Our little girl had to have major heart surgery and was scheduled for another at 9 months of age.

You can call the Charge Foundation and they will send a free information packet.
http://www.chargesyndrome.org/contact.asp

Best of luck and congratulations on his birth!