[Jim from C-Town]

I think they are missing a few zeros as the fact is that that is a relatively normal birth defect at that rate. It is probably more on the level of 1 in 100,000 or one in 20 or 30 thousand.

Our second son Douglas was born with one of the rarest genetic disorders an idiopathic disorder called CHARGE Syndrome. It is a 1 in 10,000 live births situation and so rare that there are literally only dozens per year in this country. That is a couple dozen in 4 million births in a country of 300 millions.

So the fact is that we know several local people who have a CHARGE Syndrome child in a Metro area of Cleveland/Akron/Canton of around four million. This is a significantly rarer occurrence for a live birth.

[metmom]

I did a little research online and it appears that it’s not that unusual a defect except that the pregnancies rarely go to full term. Most often the baby does not survive even in utero and a miscarriage results.

The claim that it’s 1:1000 does not reflect the number of full term births or we’d be hearing far more about it.