Monday, June 1, 2015

30 Days to BEE Hydranencephaly Aware: Statistically Speaking

Welcome to day one of Hydranencephaly Awareness month! Every day this month we will be bringing you a fact about hydranencephaly, our mission, or the children we represent. Join us for #30daystoBEEhydranencephalyaware

"Statistics show that hydranencephaly affects approximately 1 in 10,000 births worldwide, only 1 in 250,000 in the US alone where healthcare is of greater quality. The problem with these statistics is that the condition, when diagnosed or even suspected in utero, generally prompts doctors to recommend abortion. Those babies do not often count in statistics since formal diagnosis is not determined unless an autopsy is requested."

Seems like an appalling recommendation for a child who clearly, if you have been following us for any amount of time, could live a happy life full of love and laughter; but, it's the reality of this diagnosis - especially when delivered during pregnancy.

There is actually a long list of diagnoses that an be delivered in utero which are followed by a recommendation to give up on the child's life through abortion, which the medical community deems necessary by phrasing it as something like "medically induced termination". The phrase you don't want your child to have placed upon them, regardless of the diagnosis given, is the term "incompatible with life."

There have been dozens of times I've written about this very topic, or even just mentioned the existence of the term. If you're interested, you can read those posts by going HERE.
"Your child's diagnosis is 'incompatible with life,' they will not see, hear, breathe on their own, recognize their loved ones, regulate their own body temperature - they may suffer from seizures, and painful muscle spasms - they will never live a quality of life worth living and the life they do live will be short." ~statement made by most doctors upon diagnosis of hydranencephaly, or similarly presenting brain anomaly, in utero

As if termination/abortion wasn't the worse fate that children with hydranencephaly, as well as their parents, are facing - there is the term "slow code" which I've written about before. Read about this horrible ideal HERE.

Believe in the Impossible and believe in the possibilities that DO exist for your child, or any child, who is given a diagnosis of hydranencephaly.

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