500,000 seizures have not killed my son

Prodrome 

Surely, this is a mistake. Perhaps a bad joke. What child could have 500,000 seizures? It's not possible.

Whether it was a month ago or whether the actual day will be two months from today, Segev averages one hundred seizures a day. There have been some days, far gone, that he had only twenty seizures but also days that he has had well over 150 singular, separate, visible seizures. Segev has had roughly 500,000 seizures in his life.

Most are small ones, where he will stop breathing for only a matter of five to ten seconds, especially if you scratch the bottom of his foot or pinch his cheek. Some are monsters. I mean real monsters where it looks as though a monster is trying to tear him apart from the inside out. The over-familiarity with them helps to assuage fears somewhat but nevertheless require the same quick reaction, the same monitoring, the same oxygen and the same feeling of sadness that he must suffer them and be non-responsive the rest of the day, each and every time.

How much mileage does your car have? Can you think of putting 500,000 miles on it? What shape would it be in after that? Obviously the human body is so much stronger than a car, otherwise Segev would have died years ago, if not from the status epilepticus than from any of the other problems he has. The fact is that he has died on the operating table a number of times. How much has his 'maintenance' helped him and how much is simply his fortitude a factor? It's hard to keep a level head when you see so much suffering in so many different forms in one single person.

But even when his intestines had ruptured in three places and I stood in the waiting room while they poured the equivalent of an adult's body blood content into his little frame in an effort to keep him here, I was calm because I felt that he would pull through. Some may think this was merely wishful thinking on my part but I know different, having tested this situation many times. I simply knew that, the surgery itself at least, he would survive.  By the time the PICU had stabilized  him he was unrecognizable, so swollen.

While he lay there in the induced coma, on a ventilator, his hand would still twitch.

It's not some kind of milestone, this 500,000 seizures, not something to be proud of, just the opposite, I feel like I have failed Segev in some way. Impossible to know how it could have gone another way and as I've said he is undergoing changes even today, which should be nigh impossible after his brain has supposedly suffered such damage from the myriad seizures. 

This little bundle of humanity, born with nothing more than a very weak sucking reflex and a perpetual maelstrom in his brain but with a great heart that won't quit. A child that was given no chance of survival, no possibility to develop. No startle reflex, no reflexes at all. Consumed by pain in a world of darkness and confusion, nowhere to get a foothold on life, a person obliterated before getting to make a stand, never able to form an opinion, never able to make a choice.

A person like that is quite special and deserving of respect. Deserving of having someone nurture him and thus give him a dignified existence. For me nurturing is a complex issue that encompasses this idea of dignity while maximizing his ability to experience positive things in life. Maximizing may mean treatments and therapies but, having tried and seen Segev's potential does not lie with trying to make him stand or turn over since he cannot control his body, the maximizing lies with physical contact, the holding but also with using that moment to apply techniques of pressure to steady, change and encourage not only his bodily functioning but his knowledge that there is this love where one person takes care of another.

This is probably the most natural thing in the world and every mother knows this experience with their child. But when there appears no reaction from the other side for years you might begin to wonder. And as the complications of illness and disorganized bodily function necessitate a certain distance from that person because you cannot always simply hold them, they need help, treatment, care, you start to see more of the illness in that person and less of the person himself.

The child going into an institute, while never an option for me, will not necessarily make the distancing more severe than having him at home. With a child so utterly dependent it is a short path to seeing their medical status take over the better part of their identity.

Taking anything away from such a child is naturally an abhorrent thought, since everything was already taken from them. Their very ability to communicate so truncated that there is only enough to show displeasure or pain and contentment. This cannot be construed to say that they don't have desires or thoughts, simply that we cannot see them. Therefore we naturally cannot live a complete relationship with them, as we know it. 

Yet Segev surprises in ways that subtly show me there is much more understanding going on While I have never given up entirely on the notion that he might be able to grasp my hand one day, after twelve years of trying he still hasn't been able to do it. On the other hand, after having the ability to protrude his tongue for a few years now, with the qualification that it could not usually be repeated the same day, he has in these last six months gained the ability to repeat it within a few minutes of each other.

Sometimes assessing his level of consciousness is guesswork and so what appears to be a listening Segev is actually a 'don't waste your time, I'm out of it' Segev and vice versa. The fact that he is not able to grasp my hand though, does not tell me that he is not aware of what that is, nor that he doesn't desire to do so. He cannot communicate anything about this issue but in light of his tongue control, for example, I am going to assume there is much more going on inside his head than I can possibly know, despite all the stupefying medications. Rather like you would wish it assumed of yourself that much more is going on upstairs than is readily visible.

In looking at the best possible treatment for such a child, there is of course not one singular method. The point here is more to accept that being imprisoned as they are, such children should have their dignity pondered over, considered. It shouldn't be an easy task either, perfunctorily established  as though it has always been clear how extremely disabled children should be viewed.

If this is the treatment, what is the sickness?

Growth attenuation is something I had to think about for my son simply because if he were to grow to normal proportions, completely paralyzed as he is, his health would be more compromised by it. Fortunately for me, though he does grow, it is at a very subdued rate. Already he is a bit too much for me too handle and I have to watch his caloric intake to make sure that he doesn't gain anymore than he needs.  

One of the questions though, when considering growth attenuation, must be, how much do we know about growth for children in such a state as my son?  More importantly I think that certain aspects of the procedure, as the girl Ashley X underwent it, may be completely erroneous, such as removing breast tissue because of the effect her otherwise developed breasts might have on caretakers or the discomfort they may cause. Discomfort, on whatever level should never be an indicator for surgical removal with a child that is unable to communicate her desires.  Life-shortening or capable of causing severe pain are reasons.

Growth attenuation, a series of procedures, have been introduced and are advocated as a treatment, when in fact treatment is the application of defined methods and techniques to ameliorate a state of pathological ill-health or render such a state less severe, even pro-actively, for the very state of being extremely disabled which is clearly not a disease state itself. Here then you are stepping on ethical ground the firmament of which has not yet been established.

Whether considered grotesque mutilation or the blessed act of remitting harm and discomfort, the Ashley X advocates should understand that such procedures does not automatically evoke a fully formed model of dignity and nurturing though they imply, mostly by repetition, that it is.

Historically it is typical  of us to blunder forward without foresight, that's how progress can be made. Most likely the increased interest in the issue of growth attenuation as a result of little Ashley X undergoing it, though without the child having a choice and technically illegal, will make for fertile discussion and eventually establish guidelines that will seem more realistic than the horribly antiseptic treatment Ashley had to suffer.

It may seem tempting to view her parents as either brave or heroic for putting Ashley under this treatment since they apparently acted upon information that she would never develop mentally, never have any body control. This may accurately describe her condition even, I know that such a description fit my boy perfectly. But they were wrong about my son's chance of development because we are in need of better assessments. Assessments which can be written by medical professionals who are guided by the parent.

But I always do tend to hang around till the credits roll even though you know 'who done it', until the last throw of the dice hits the backgammon board, despite clearly having been beaten, because in those moments linger the idea of how things could have been different, there lingers the potential for other things, for change, for learning.

When you do that often enough, you get a sense of the potential that rests in dormant things, the potential, even if it is only an extremely disabled child's thought.  I know we can never know that thought, but I'll always play it out until the end, to give that thought some space to be.