Simply cannot leave the euthanasia issue alone*updated*

*updated at bottom*

Someone was born, millions of years ago, who needed much longer to be cared for as a child. His maturation was much slower than that of his peers because due to mutation his brain was larger or more complex* than others. Allowing himself greater distance from his instincts but greater development of long term thinking and thus requiring more protection. But he was protected until he himself could establish his intelligence in the community, being more inquisitive possibly, or simply a better problem solver. He became chief or important in the community in some way. He then proceeded to produce progeny and having established a precedence his progeny survived and intermingled with others, benefiting the gene pool, creating a move forward in evolution.

Yet children are born without most or part of their brain, some even having high levels of function. We know of autistic children who, since other areas are apparently not accessible have extremely high levels of function in particular areas. These facts alone should indicate that the non communicative vegetable-like attributes given to children born with severe brain damage is not scientifically based. 

Have we the means, technological or otherwise to properly assess what goes on in the brain of such a non-communicative child? They are certainly no jump forward on the evolutionary scale but I have no doubt that anomaly is at the heart of evolution. That, aside from chemical imbalances or exposure to toxic substances causing the deformation in structure and function of extremely disabled children, in itself cannot be an indication that their lives are worth less since we are not presently capable of assessing the meaning of their level of cognizance. Indeed can anyone believe how we define cognizance today will remain static?

But more so, there may be elements of understanding present in the non-communicative brain which have tremendous value. If we will ever be able to access these elements is entirely irrelevant to the notion that the extreme multi complex disabled child has less of a right to existence a priori.

I am not suggesting that such children hold some secrets that will advance evolution, let it be clear, but our lack of present knowledge must necessarily be considered when making claims of value, when staking a claim of moral elitism, as though the decision of quality of life can be based on cognizance. When we establish clearly, as Peter Singer has, that we know what cognizance is and that therefore we can move along to creating guidelines of neonatal euthanasia based on physical attributes of suffering pain, we remove from these children their ability to be human beings and transform them into biological units in some science fiction movie. 

If we talk of the neonates "suffering", though, we are inferring that they are somehow aware of their pain. But such awareness requires being conscious of oneself. Others might argue that a baby's reaction to pain is merely instinctual. Perhaps it is. Perhaps not. How do you know? Isn't pain a stimulus? And isn't the development of the brain, however truncated dependent upon stimulus? 

Pain can be sedated. Unfortunately some forms of pain are so great that the sedation also results in sedating the conscious mind. So now you have eliminated the conscious mind and from there it is rather easy to make life and death decisions about the individual; "he is no longer conscious so we must decide for him". 

Often these discussions look to the most extreme cases in order to establish their protocol. A child is born with the most extreme of disorders with a known(?) life expectancy of a few excruciatingly painful months. But they may represent only a minute fraction of the cases where factually, establishing life-expectancy is as much defined by the exceptions, as the rule.

The discussion is relevant to all disabled children born as such or becoming disabled later on in life due to the fact that when policy protocol defines extremely disabled children and insufferable pain without inclusion of the wider sense of quality of life as presented by the experience of parents of such children any such definition will and always has been subject to alternate interpretation by medical professionals. 

In other words, once you have protocol for such ill babies a grey area will establish itself where these elements are open to discussion; what is insufferable pain to one parent is not the same thing to another, despite that the protocol established was supposed to have done away with these very discussions! Once society "moves forward" to establish such protocols, and they will, while trying not to sound like an alarmist in saying this, I believe a much wider population will be at risk as society accepts norms previously not accepted. 

Fifty years ago, openly gay marriages would have resulted in complete ostracization, if not the death of that couple. Values do change, people. Society is not static and these discussions, that we are not actually privy to,  will alter how we perceive what is acceptable in the future. 

There is a struggle for handicapped people to gain recognition of their needs as members of society and perhaps the "ethical individuals" will continue to begrudgingly  bestow them with more standing. They can be a very vocal group after all. 

But how difficult is it to convince a parent that their child is not viable? If he is born with already failing sight, missing parts of his brain, parts not being in their proper place, unable to speak or sit or even move voluntarily, with a "life-time" of twenty four hour intensive care and endless medical procedures and pain waiting for him, how difficult is it to suggest that such a child would be better off dead? Some, as counter, might say, "that is all very well, this talk of giving such a child the right to live, but where are you? Perhaps you should take care of such a child!" Well thank you very much, I would respond, that is exactly what it is that I am doing with my life. And please show me, I would like to add, one parent of a severely, even extremely disabled child, who cared for his son or daughter and, after insufferable suffering, having lost that child, regrets having done so. 

Sometimes people will speak aggressively about an issue as though its' resolution is imminent. As if their added severity ups the level of drama since, clearly, we must decide soon if not now. Decisions need to be made, certainly. But which decisions, that is the question. This little niche of parents who have a child that requires the consideration, to fight for its life or assist it to let go of life, should not be railroaded into thinking that our assessment of these issues is complete. Because our assessment of these issues has only just begun.

I just ran across the story of "baby MB" again when researching SMA (spinal muscular atrophy). I had followed it when the news broke in '06 but lost it to my failing memory. You can read a bit about it here and here. The thing that absolutely flabbergasts me and enters into the whole euthanasia discussion is that the mother had to fight the hospital in order for them to keep her child alive! The expert doctors apparently thought that the child was suffering "insufferably" but the mother thought otherwise. Who is the expert in these cases? Should the state (ie doctors and institutions) decide or the parents, who are often seen as "distraught, over emotional" as if being over emotional is a bad thing in such a situation!  But then the following article (here) left me a bit confused about my feelings on the matter, especially the quote from the Father, "nobody wants to have the threat of complete bankruptcy looming over their head. It’s just kind of inhumane the way the world works in these brutal situations.” I don't see it as being inhumane. Insurance companies can barely be expected to make an exception the rule and remain economically viable. I am not suggesting any conclusion here, merely that there is room for formulating an opinion, which still eludes me personally.

*reference for example the brain of Einstein where his glial cells were much more prolific than average