Everytime we think about any disease, we start thinking that our organism is suffering from the insideand can, eventually, kill us, but what if we start making connections between a syndrome and a mithical creature like mermaids?
Believe it or not, there is a syndrome called Mermaid syndrom, or sirenomelia that consists basically in having the legs fused together of a new-born child. The legs may be fused to the sides like flippers or having not feets at all, that is the reason that gives the name to this syndrom. There are two options of this syndrom, the new-born may not have bones at all, or just being fused entirely.
We may think that this syndrom should be fixed only by a simply surgery that devides the legs, but the bad news is that usually the children with this disease die a few days after birth. This abnormality usually brings another problems that affect kidneys, bladder, genitals and rectum, and, in some cases, even lungs, are affected by the syndrom. Counting all these problems, it is not difficult to think that the probabilities of survival are limited.
The causes of this syndrom have not be discovered, but can be related to different situations, like poor prenatal care, or genetic predisposition. Hopefully, this disease can be detected by sonogram during the pregnacy but the only treatment that doctors give at that moment is the termination of the pregnancy.
As I posted before, the probabilities of surviving are very rare, but we have the case of three children who have the syndrom and have survived. One of these children is a little girl who was born in Peru. Although her leg bones were not fixed to each other, and could move independently, the situation with her internal organs is different; the kidneys were affected by this condition.
Milagros had an operation that separated her legs in 2005; the doctos said that probably she could be walking in a few years, but she will receive corrective surgery for her internal organs for the next 10 or 15 years.
The situation of these littlle children, doomed to death, seems to be very complicated, but in your case, if you would be in this situation, what would be your decision; would you stop the pregnacy or just continue with your normal life in order to see what would be the future for your child?
Ethics are in a big way involved, if not in our own decision in other's, at the moment of deciding what to do in this cases.
ReplyDeleteTrying to assume a ethical position this time, I'm directing my view on the subject from a point of view based on ethical and moral assumptions. It is a personal opinion not based in any kind of dogma, I know, but I would continue with my parental role and assume it until I could do nothing about it. A child is a "blessing" and as this beautiful experience, I would do as much as possible to keep on the parental track and take care of my disabled child, no matter how much money, time and work it takes.
I go along with what you think, Matias; and probably I will do the same:try to follow with my pregnancy up to the end regardless the condition of the baby. But I also accept the decision of those parents who decide not to continue since it is a really personal issue. However, I have heard that in our country this is not an alternative since medical abortion is not allowed, which in my opinion is something really unfair.
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