Day two of #30DaystoBEEhydranencephalyaware tackles one of the greatest misconceptions - that is delivered by unknowing medical professionals who often "google" the condition since they have such little first-hand knowledge of hydranencephaly.
"The medical text prognosis for children with hydranencephaly, which is often given to families upon diagnosis, states: 'The outlook for children with hydranencephaly is generally poor, and many children with this disorder die before age 1. However, in rare cases, children with hydranencephaly may survive for several years or more.' The reality is reversed, that rarely does a child with this diagnosis die within the first year.
GHF is struggling to have the formal medical diagnosis altered to reflect the reality, but we have successfully changed the definition across the web in hopes of families facing the decision to give up on their child far too soon.
You can read the definition as we have reworded it in several places around the web and even in print publications, thanks to some amazing opportunities we have been presented with to author updates to various publications that recognize the outdated medical text. A couple of those places:
Pediatric Brain Foundation
The full definition, as we have submitted, has been challenged more times than I can count by medical professionals who argue that our definition is far too optimistic to be the reality of the condition. What are your thoughts?