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Anencephaly literately means the absence of a brain. It’s a very rare case of congenital malformation of the neural tube. The neural tube being the origin of the whole nervous system, it is a structure that develops early on and any defect on its level has dramatic repercussions.
The neural tube is formed starting from the 3rd week of pregnancy. It’s formed from the thickening of a precise region of a tissue called Ectoderm, the rest of the ectoderm will form the skin and the neural plate will penetrate the embryo and later on form a closed tube (neural tube), the sensory cells scattered around in the skin. The neural tube will give the brain and the spinal cord.
Unfortunately, in some cases this is not how things happen, the neural tube fails to close in the cephalic region. The tube is no longer a tube in that region, and the skin can’t climb over it and close it. Instead some underdeveloped nervous cells pile up, in a more or less organized manor without any bones to protect them or even skin.
Not all kids affected die prematurely, 45% of them reach the term of their gestation, but none lives a lot longer than 6 days. They are born blind, deaf, unconscious, and unable to feel pain. Never in their short life will they gain any consciousness and most of them actually die because their rudimentary brain cannot regulate properly essential body functions.
95% of parents, once informed with their child’s situation choose to terminate it. Though medical intervention (reparatory surgeries for other defects that may accompany anencephaly, antibiotics, assisted ventilation…) may increase the life of such a baby, but most of the times the child is allowed to die smoothly and with as much dignity as possible.
There is no cure for this defect, because by the time the case is diagnosed the development is already altered, and there is no way to fix it. The only weapon we have is folic acid which is known to reduce the prevalence of this defect, problem is that by the time a woman knows she is pregnant then it’d be too late!
When I read this I can’t help but to remember all the babies/kids/people that only get a partial chance of living, the ones that are born with severe defects, the ones that are born in severe poverty, in war, in abusive families. I can’t help but to think of Layal. In my mind I keep on thinking: which one had a better chance? Which life was better? Certainly Layal lived till teenage and sure she actually KNEW the world, these kids never had that chance. But on the other hand Layal only had the chance to know a world she REALISE she would be deprived off, a world that she KNEW she never belonged to, and a world she SAW how she will leave… She felt pain and she realized she will die… Soon!
Isn’t that much more cruel than leaving a world you never knew to care for?