Saturday, June 6, 2015

30 Days to BEE Hydranencephaly Aware: Born Without A Brain

Day 6 in the #30DaystoBEEhydranencephalyaware series here at Journey of the Bees = tackling a huge misconception, again.

"Upon diagnosis, doctors will often state that a child with hydranencephaly 'doesn’t have a brain'. This isn’t an entirely true statement – most generally the cerebral hemispheres are the only areas affected, but in more severe cases other areas can present as damaged or absent as well."

"...does not have a brain" - shouldn't that mean that a child cannot survive?

Here is exactly what a diagnosis of hydranencephaly truly means - I'll try to avoid medical jargon.

Here is the brain:

The curly, wormy looking areas (cortex) are missing to a large degree in a child with hydranencephaly - both hemispheres are most often affected, but in very rare occurrences only one side is affected (hemi-hydranencephaly).

To give you an even better visual - here are brain images side by side. These are my own son, Brayden Alexander's, brain scans from diagnosis on July 1, 2008 in comparison to a typically developing brain scan. 

Healthy Brain MRI (left)        Brayden's Brain MRI with hydranencephaly (right): Top View

That gray stuff on Brayden's MRI, that is cerebrospinal fluid... that is all that is there! For one reason or another, most of his brain was destroyed in utero and replaced with sac-like areas filled with cerebrospinal fluid. There is no winding tangle of gray matter, the typical brain image you envision when you think about a brain.

For a better view, here are comparison MRI's from the side view:

Brayden's Brain MRI with hydranencephaly

Healthy Brain MRI

Clearly different ... As you can barely see, Brayden has a VERY thin layer of cortical mantle. The cerebellum is there, but a bit small... but his readings state that it does have normal configuration and above average signal intensity. His brainstem is completely normal in size and signal... and that is about all that he has as far as the major portions of the brain go.

One thing we need doctors to realize is that brain imaging is great, but it does not paint an accurate picture of the possibilities that exist for the child - not the life they're capable of living, or the life that they are living. There are so many active components of the brain and we believe in the power of neuroplasticity, the brain's ability to "rewire" itself!

Here are some links to other blogposts on this topic:

Bee-lieve Campaign
Brain Awareness Week: Believe in the Impossible!
Vegetative State of Mind

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