Re: Frequency of trracheostomies

[Guest guest]

Meg,

I really appreciate your response on this. It is nice to have accurate

information. Thanks.

mom to (7 1/2 mo) CHaRGE

Meg Hefner wrote:

>

>

> I checked with the data from (old) questionnaires,

> which I reported at the 1993 St. Louis

> conference. In our survey, we had 19% of children

> had trachs. Kim Blake reported 14% in the UK.

> That very likely reflects the phiosophical

> differences between US and UK. I would also

> expect my survey may be an under-estimate, as most

> parents fill it out when the child is quite young

> and some kids don't get a trach until later. So

> my best exitmate is that, in the US, between 20%

> and 30% of kidds with CHARGE get a trach at some

> point. Lots, but no where near the number quoted

> by the ENT.

> Meg

>

> Meg Hefner MS

> Genetic Counselor

> St. Louis MO

> meg@...

>

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