Sunday, March 16, 2014

Brain Awareness Week: Believe in the Impossible!

"Without a brain, you're a shell. A vegetable. That's not up for debate. You need a brain to be human."

...why greater education efforts and awareness campaigns are crucial to families facing a diagnosis of hydranencephaly, or any condition deemed "incompatible with life"...

"Life is impossible without a brain..."

I hope more individuals learn to "Believe in the Impossible!"

While hydranencephaly is often misdiagnosed as several different cephalic conditions, depending on the medical professional to look at the brain scan images, there are a specific few that are most often confused. So, let me begin by briefly comparing those to clarify the differences between anencephaly, hydrocephalus, and the condition we represent, hydranencephaly. 

Anencephaly is the absence of a major portion of the brain (most often noted in definition as the absence of the telencephalon), as well as the skull and scalp, that occurs during embryonic development. This condition is most often the condition first to mind when a child is said to have "no brain." 

Hydrocephalus is the accumulation of excess cerebrospinal fluid (CSF) in the ventricles (cavities) of the brain. Often the brain itself can be affected due to the excess pressure that can accumulate if hydrocephalus goes without proper management; however, in several cases the affect on the brain itself is minimal. 

Hydranencephaly is the absence of the cerebral hemispheres which are replaced with cerebrospinal fluid (CSF). Coincidentally, another term for the cerebral hemispheres is the telencephalon (YES, the SAME portion of the brain that is absent in the presentation of anencephaly.. thus, the confusion). Not always, but often hydrocephalus occurs as well.

With those lines defined, here are some amazing instances of living without a brain:

~"I'm sorry to tell you, but you've been living without a brain for the last 40 years."

Imagine that you are a neuroradiologist looking at MRI scans of brains. You’re drinking your vanilla mocha frappuccino and flipping through images, making diagnoses. A tumor here, a stroke there, a normal brain here, encephalitis there.

Suddenly you come across a scan showing a giant hole where 75% of the brain should be. Mostly black space where important brain parts normally are.  

You'd think to yourself, "Surely this has to be someone in a severe coma who will never wake up again."
It turns out you’d be wrong.

This brain, in fact, belongs to a well adjusted and, more importantly, conscious man who to this day enjoys a comfortable middle class life.

Despite having dramatically enlarged ventricles (reservoirs of liquid that act as the sewer system of the brain) that squished out most of his normal neural tissue when he was young, this gentleman somehow managed to grow up normally, get an education, a middle class job, a wife and kids.

All of these seemingly normal accomplishments while having less than half of the brain volume that you or I might have in our skulls.

Although at this point who knows. We should get our heads scanned just to check." ~"Do We Really Need a Brain?"

~Back in 1980, an article appeared in Science, one of the world’s top journals, describing the work of John Lorber, a professor of pediatrics at University of Sheffield in England who had conducted a number of studies on individuals who were afflicted with hydrocephalus and came up with some remarkable findings. Lorber had subjected his patients to CAT scans and found that while most of them were mentally impaired, some, even when their brain filled no more than 5% of the cranial cavity led normal lives. In one documented case, a colleague referred a young man to Lorber because of his unusually large head which apparently was not causing him any difficulty. A CAT scan revealed a skull lined with about a millimeter thick layer of brain tissue and filled with cerebrospinal fluid. Of course the brain stem which sits at the bottom of the brain and connects to the spine was normal. The rest of the brain is obviously capable of some remarkable feats, with one part able to compensate for deficiencies in another. The thin layer of brain cells was certainly up to the task of providing the necessary brain power, he had a high IQ of 126 and had a first class honours degree in mathematics." ~"Is it true you can live without a brain?" Published by Alexandra Pires-Ménard

~The neurologist at the University of Marseille followed a 44-year old patient who had complained of a weakness in his left leg. He sent him for a brain scan. When the doctor saw the magnetic resonance image of the man’s brain, he was stunned. In fact there was not much of a brain to be seen. Most of the skull cavity was taken up by fluid, with a smattering of brain tissue lining the inside of the skull. The man should have been severely resulted, and yet he was not mentally disabled, holding down a job as a civil servant. Subsequent tests showed his IQ to be below normal which had not impaired his ability to carry out tasks at the local tax office where he was employed. The man’s head was filled with cerebrospinal fluid which normally bathes the brain and spinal cord and accumulates in cavities in the brain called ventricles. The French patient had been born with hydrocephalus and was surgically treated as an infant by implanting a shunt into the brain to drain away excess fluid into the blood. He had developed essentially normally oblivious of the fact that his head was essentially filled with fluid until the problem with his leg cropped up. A neurosurgeon inserted another shunt and within weeks the man’s neurological problems disappeared and he was back at work in the tax office. ~"Is it true you can live without a brain?" Published by Alexandra Pires-Ménard

~On February 19, 2009, an amazing little sweetie named Faith Hope Walker was born at 12:23... crying. Her incredible story, shared by her mommy after diagnosis with anencephaly in utero, was one of the first blogs I started following after having Brayden. Reading my way through her days gave me such inspiration, while motivating me to begin sharing our own journey with the goal of changing the many misconceptions that existed in regards to conditions like anencephaly and hydranencephaly. I was determined to open the minds of the people who were commenting on her heart felt posts so negatively; the people who were unable to see the possibilities that existed despite medical prognosis. "I am so thankful for the 53 weeks that she spent here on earth. That's right, 53 weeks: 40 weeks in my belly and 13 in my arms. One year and seven days.." ~mommy, Myah at The Story of baby Faith Hope "At my 19-week ultrasound, I was told that something was wrong with my baby's head. The doctor said that my baby had no brain. I'm sure most people wouldn't have even considered her to be alive. I was told that I could safely continue my pregnancy and allow her to die naturally, or I could induce labour and terminate the pregnancy. I chose to carry my baby to term for one simple reason: love."

Hard to believe that there is anything negative to say about a loving mother sharing the life of her child.. let alone verbally attacking a sweet, innocent little baby. Unfortunately, harsh debates are all over the internet and I have personally encountered several during my five years of involvement. Here are a few, just to give you all an idea of the crass adversity these families face:

~Is "lives" really the correct term?  
"Subsists" seems, sadly, more appropriate.

~Poll: Your baby is born without a brain, which would you do?
Raise it: 7.7% (53) Kill it: 92.2% (638)

~The correct medical term for the Baby's condition is Anencephaly. And we see it at the hospital infrequently. Philosophically, what is a person who cannot recognize themselves as alive or dead, awake or asleep and is powered only by a heartbeat and expensive medication? They look human on the outside but maybe that's enough for some people. Mothers are fascinating.

...deny care to that lifeform and channel funds towards children who have a chance isn't murder if it isn't human

Sometimes there is some welcomed logic found among the ignorance of those who just don't know:

~"...the child wasn't born fully without a brain. He still had a brain stem, which presumably controlled organ and bodily functions. The thing is, the fact that he has a brain stem means we cannot say decisively and with 100% certainty what he is and isn't capable of experiencing. We know less about the human brain than we do the recesses of outer space. We do know that people have suffered incredible, devastating trauma to the brain, and yet managed to continue carrying out some form of cognition. People caught in freak accidents, people injured in wars and conflicts, people we would by all rights expect to be brain-dead vegetables, but have somehow managed to carry on thinking in some manner. The brain seems to have some limited ability to rewire itself based on need and circumstance, to be able to bypass damaged neurological matter, and rewrite existing matter to be able to allow some form of cognition to continue. Therefore, we simply do not know to what extent the boy is unable to cogitate, because we do not know to what extent the brain stem has adapted to get by without the higher cortex. While it's obvious that there wouldn't be much chance for higher cognition, the fact that the boy seemed to exhibit some signs of response when stimulated by his parents means we cannot rule out that there may have been some simple form of awareness. We will never know, because we are unable to look inside other people's heads and see how they think, but the simple fact that it would be possible means that any talk of termination should be done with utter seriousness, after having thought through all the consequences, rather than being chucked out as a standard response."

~"What behavioural signs did he exhibit which to you suggested misery? If his brain stem is unable to carry out any form of cognitive function, how could he be expected to be capable of misery? And if it does show some signs of adapting to a basic form of cognition, how do we know that he isn't experiencing contentment instead of misery? He is essentially a baby being provided with all the things that any baby could desire: food, warmth, shelter, protection, love, attention... surely we should assume, given the evidence, that if he is capable of any form of cognition, it would tend towards contentment and satisfaction, rather than misery and suffering?"

So, you take the good with the bad... and fortunately the good far outweighs the bad! But we must keep working to encourage individuals to educate themselves before making such crass judgments on human lives. 

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