Metamorphosis- Growing up with Turner Syndrome

2. A dose of reality- Death before birth

Are you still feeling capable of dealing with even tougher problems after reading the introduction? Well, then let us now address the elephant in the room, the single most tragic aspect of TS- death in utero.

First of all, I have already briefly mentioned the sobering statistics in the introduction: Only one percent of conceptuses with TS survive until birth. Conceptuses, because many of them die before they can be called embryo (four weeks after conception) or foetus (10 weeks after conception). As the pregnancy progresses, the odds of a baby with TS living become much better. Causes of death in utero typically are heart problems or problems caused by fluid retention (which can among others also be heart problems). Still, even in live births, Turner Syndrome is not as rare, as one might guess, affecting around one out of 2000 to 2500 live female births. This incidence qualifies it as a rare disease in the United States, but TS actually is much more common, than many better known conditions like e.g. ALS ( with an incidence of roughly one in 50 000). At the same time, TS is said to account for up to fifteen percent of all miscarriages. These are the bare, disillusioning figures. 

I got the phrase "A dose of reality" in this context from You Tube. It is the title of a video by "Brooke TV", in which she as a woman with TS is talking very emotionally about some deaths related to TS she had recently heard of. Imagine just for a moment having TS yourself and watching this precise video at the end of another regular day- Let us just say it puts things into perspective more effectively and cruelly, than almost anything else could. No one would spontaneously react like "Well, big deal. What were on the other hand the odds of me being born perfectly healthy, without TS, compared to the chances of me being born or not being born with TS?" On the contrary, thinking about this topic, listening to Brooke, you get an idea of how real her pain is. She, like some other women with TS I have listened to, turns to her religion, which seems to help her process all these emotions that are otherwise too painful to express. A little girl, who could have lead just the life you lead, who could have had it all, instead had everything, a whole magnificent, messed- up world, taken away from her. Her parents hoped for her, prayed for her, chose life for her, loved her. Does it matter at all? Does anything matter? Can there be a god, should you even hope for a god chilling somewhere above the clouds, if He does not answer these pleading prayers from the bottom of the crying parent's hearts? How indifferent, appalling, sick would He be? Can there ever be any good in this unfair world? So many questions- no answers at all. Only one thing is certain. All these deaths do not serve any higher purpose. Once and for all times- NOBODY, not even a god, is morally allowed to kill off embryos, just so they can serve as an quote on quote "inspiration". If believing helps you to cope with a loss- fine, do, as you please. If you however want to demand of others or even indoctrinate others to believe, that in their darkest hours, god will be right there, watching over them, holding them safely in His hands up until the very end- please forget about all of this rubbish. There is just too much inequality, irrationality in this world to see it all as the work of an allmighty, caring god.

 Instead, the very dust we are made of comes out of the heart of exploding stars. It is thrown out into the void by supernovae, which make a single dying star for a split second in space- time radiate as much energy, as a whole galaxy. This dust then travelled unimaginable distances through void space, before it miraculouslsy gathered, to form YOU AND ME. Us humans- with brains complex enough, that we are CONSCIOUS of ourselves, actually WONDER, why we even exist. Our consciousness, everything, that makes us unique- nothing more, than small electric impulses send between firing neurons. Still, we can predict the movements of the stars and planets in the sky with remarkable accuracy. We defy death every single day with all the pills, syringes, infusions, surgeries, beeping machines of high- tech medicine... And no one knows, what else we might yet become capable of! One day, we might even design an entirely different species out of our own DNA. The dawn of that day, should it ever come, could bring with it the ruin of our species, but it would be yet another triumph of our human brains, with their overwhelming complexity, so far beyond our capability to grasp. So does it really come as a surprise, that mistakes while copying the human genome, this greatest of all miracles of nature, happen from time to time, that a small x- chromosome might go missing? I would rather wonder, how the hell our bodies even work just as they are supposed to most of the time. We are all children of the universe, made out of dust, returning to dust in the never- ending circle of life. That ought to be enough of a miracle- Sadly, sometimes, it is just too little to hold on to.