Friday, February 20, 2015

Fact Buzz Friday

Statistics will tell you that hydranencephaly has an occurrence rate of 1 in 10,000 births worldwide, or 1 in 250,000 births in the United States alone (Kurtz, 1999). 

What statistics will not tell you about are the countless babies who were given up on far too soon, with encouragement from the medical professionals. Statistics also will not tell you about the countless others that are unknown due to misdiagnosis, lack of diagnosis, or just simple oversight without a cause of death to be determined.

Statistics are important to the medical community. 

They're not important to our community, except that without them - we cannot gain ground in the world of awareness in successfully changing the medically subjected misconceptions that surround this diagnosis; nor can we ensure that every child given this diagnosis is given the opportunity to live the quality of life they deserve, without the stigma attached that their condition is "incompatible with life." 

Incompatible with Life? Not often. 

The following video is not about hydranencephaly, but it does give you a raw glimpse in to the lives that our families live in the beginning after diagnosis: being told to terminate, expecting a baby to die and not being able to celebrate their life, planning a funeral instead of a baby shower, counting final breaths, etc. 

This fact buzz Friday message is simply this:

Please do not let a diagnosis dictate the quality of life an individual will have. Do not let a diagnosis guide the level of medical care that an individual will receive. Do not let a diagnosis fool you in to believing that there are any amount of impossibilities that travel along with it. Do remember that each life is a unique one, not to be compared to all others. Do remember that each little life, regardless of how little in quantity, will be great in quality. Do remember to "Believe in the Impossible!" 

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