Where is your line?

As I am sitting here in this intensive care hospital room and take a look around, it all seems like a scene from the series ER. I see a two year old boy lying in a crib who is mostly unfazed by anything going on around him, who is disinterested in eating or drinking, has 20 wires hooked up to his head all bundled up into a neat head bandage leading to a big computer screen and camera that are recording his every brain wave and movement.  Then there is another set of leads hooked up to different parts of his body and a different monitor continuously checking all his vital signs. And then of course, there is this big blue box standing next to the crib with a bunch of overwhelming ever-changing numbers and tubes attached that lead directly to that boy’s trach making it possible for him to breathe. There are various other medical supplies and emergency equipment set up around the crib and various people in multicolored scrubs keep going in and out of the room writing down numbers, checking on the many wires, administering medication, and throwing out educated guesses trying to analyze the problem at hand with fancy medical terminology. This is the kind of stuff that most parents worst nightmares are made of. For us, this is the reality we have been living with for over two years now. Nothing could have ever prepared us for this and never will we be completely prepared for what might be ahead. Yet on the good days, you try your hardest to enjoy the calm waters. And just when you think you have reached some sort of a comfort level and routine, something else knocks you right back down. After two years, you shouldn’t be surprised by this sudden change of events anymore but somehow it still catches you off guard.

I have to let some thoughts out of my head right now that will raise eyebrows, so be forewarned.

Every medical situation is different and even among patients with the same disorder, there are a lot of variables that can make for quite a list of possible presentations and therefore management approaches. When you hit bottom due to a medical complication and you think you can’t take anymore, it is human nature to start to compare. In the ICU you may look around and wonder what other patients were admitted for and whether, in your mind, that situation would be easier or harder to deal with. In all fairness, this mental assessment is totally subjective as your opinion of easier or harder is solely based on your own personal experiences and you cannot possible presume to know what it is like to live in someone else’s shoes. Still, comparisons have a strange comforting effect. Likewise, they can also make you imagine worst case scenarios, again very subjective to your own imagination and experience. Whenever Wyatt hits a challenge that requires hospitalization, I always run into this wall of asking myself where the line is. My beliefs and expectations of life have been challenged on so many occasions, it is hard to distinguish which ones are scientifically based and which are emotionally driven. I recently read a blog post that examined the difference between the pro life activists and the true meaning of pro life compared to the socially accepted definition of only including issues related to abortion laws. It was fascinating to me that the writer pointed out that there is much attention given to the seemingly never-ending discussion over the value of the life of an unborn child, yet hardly ever is there mention of the value of life of a child born with a physical or mental disability. That blog post questions everyone’s subjective stand on the overall value of life, or quality of life as some may call it. So where does this fit into my never-ending struggle to redefine my beliefs? Well, it’s fascinating food for thought but doesn’t help the dilemma. As a scientifically minded person, I usually take the stand of not messing with nature whenever possible. I feel that medical advances and technology are a double edged sword. Survival of the fittest is a principle I strongly belief in. I believe that medical technology and advances get in the way of that principle and the overwhelming human population and all the challenges that come with it are the consequence. With that in mind however, I also realize that medical technology and advances are based on not only scientific curiosity but primarily driven by some form of emotional attachment. I often ask myself, knowing what I know now two years into having a life support dependent son, would I be(true) pro life? If I answer this question from an emotional standpoint, the answer would be a clear yes. With the right support system it is certainly possible to lead a meaningful and fulfilling life despite the challenges. However, if I didn’t have the emotional attachment due to the person I am referring to being my own son, I would most definitely advice against such a challenging and stressful life. In fact, just to make it clear how deeply rooting this belief is, if I was the one on life support depending on other people to take care of me, I would not want to live like that and I would seek legal action to establish my right to choose.  So that then begs the question of why as humans we tend to question our own beliefs when it comes to the lives of our children? Are we truly acting in their best interest by keeping them alive? Should we embrace medical advances and technology at least long enough to eventually let them choose for themselves what they consider a life worth living and true quality of life? Or are we just selfish, unable to let go of the person who we have become emotionally invested in, unable to bare the thought of letting go? Where is the line? As hard as it is to answer any of these questions clearly, what are we to do when the next hurdle requires even more medical intervention and possible technology? When is it too much? When does the emotional attachment outweigh logical thinking to even ask the previous questions? Remember, all these questions and potential answers are all very personal and therefore highly subjective.  There is no guide book that you can buy to point you in the right direction. You can only make decisions in that moment of time as they are required to be made and only with the perceived knowledge that you have at that same instance. As human being, we will always use retrospect to doubt our own decisions and if we’re smart enough we will realize that most of the time, there are no clear cut right or wrong answers. But what is one to do when that decision could be the difference between life and death? Is ventilator dependency crossing the line for you? What about mental retardation? How about cancer? What statistical survival rate subjectively justifies the side effects of cancer treatments? What if someone you know had been in a car accident and hasn’t woken up out of a coma in 3 weeks? How long would you wait before you can emotionally justify pulling the plug or would you cling on to the news stories of miraculous awakening and if so, for how long? What about kids who were paralyzed from the neck down unable to physically do any daily tasks by themselves and requiring a ventilator to breathe? Or to keep it even simpler, how do you decide which preventative tests to do and how often?... Where is the line for you?

Most people don’t give these kinds of questions too much thought because they are just too sad to think about and emotionally draining. And they naively assume it will never happen to them. Well, that is the kind of a mental game that living with CCHS or any other so to speak “abnormal” medical challenge brings along. Most affected families would never admit these thoughts publically yet they linger all too often and resurface whenever a new medical challenge presents itself.