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Re: Recurrence risk

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Meg,

My parents were told back in 1954 when I was born that the pneumonia my

mother had in early stage pregnancy was what caused this. Is that incorrect?

Kay

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Recurrence risk

,

the way I came up with the chance of having a second child with CHARGE was

simply

to aks - I did a very extensive survey of the Foundation membership, sent a

mailing to all the Genetic centers in the Us and did a literature search. I

tabulated how many children were born after the child with CHARGE and how

many

of those also had CHARGE. I did all this several years ago (before this

list

existed).

The number of families with more than one child with CHARGE is VERY small,

but

it is defnitely not zero. Until we find a cause/gene, we won't be able to

tell

for sure during prgnancy. I also don't know what to do with all the

suspicious

things in extended fmaily members (hearing loss, heart defects, OCD,

whatever).

Right now, I don't know if those things are at all related or if they are

just

there by chance. Stay tuned!

Meg, your resident geneticst

Meg Hefner, M.S.

Genetic Counselor

St. Louis, MO

hefnerma@...

meg@...

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For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter)

please contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

6th International CHARGE Syndrome Conference, Cleveland, Ohio,

July 25-27, 2003. Information will be available at our website

www.chargesyndrome.org or by calling 1-.

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Meg, thanks for your trying to solve the genetic/recurrence ponderance. My

daughter aged 19 (not charge) wonders if she is at increased risk of

producing a charge child. We are anxious to find out more about this, as her

brother has charge. Thanks! Barbra M

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