Monday, January 16, 2012

Sighing again

So let me get this straight...

If parents walk into a children's hospital and ask for a highly unconventional series of surgeries to remove healthy tissue and organs, limiting their daughter's growth... a series of surgeries that would never be performed on a nondisabled child... the answer is, fine, because she's developmentally disabled?

BUT, if parents walk into a children's hospital and ask for a very standard surgery to treat an organ that isn't functioning properly, a surgery that will improve their daughter's health and very probably prevent an early death... a surgery that is routinely performed on nondisabled children... the answer is no way, because she's developmentally disabled?

Got it.

(Wolf-Hirschhorn syndrome is caused by a partial chromosomal deletion--just like my son's (unnamed) diagnosis, only it involves chromosome 4 instead of chromosome 7. Chromosomal anomalies can cause a whole array of anatomical and physiological differences that would complicate a surgery, or make it riskier, and I'd certainly expect those particular complications and risks to be explained to me in the planning stages of a surgery. But that's not why Amelia is being disqualified, according to her mother's story.)

Barriers Bridges and Books
has a compilation of links about this story. Stephen Drake is also on the case.

1 comment:

Stephen Kuusisto said...

thanks Penny for this great post. You've echoed my feelings about this, exactly!