Quote:
Originally Posted by dr2005
Irrespective of the concerns regarding quality of life, which may have merit (although I would argue we know far too little about her actual prognosis to comment), the notion that her mental condition should even have been considered as a criterion for transplant is beyond the pale. That should not even enter into the equation, frankly, and on that basis I'm not surprised they reacted as they did. On that basis, I find myself questioning why the doctor raised it in the first place and it does leave a fair amount of explaining to be done.
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Individuals with Wolf-Hirschhorn Syndrome often have a significantly reduced head size, which no doubt causes neural impairment. As a result, various physiological impairments can occur, such as affecting the cardiac system and intellect causing mental retardation. Thus, her mental condition is a product of her physiological disorder. I will say the doctor commented quite a fair bit on her mental condition as though it stemmed from a separate etiology. I cant explain why he/she did that, I think if it were explained in a similar manner that I provided in this post by explaining her neurological symptoms and likely cardiovascular impairments will result in more resource investment, which unfortunately has to be conserved for those who can benefit the most, the parents may be more understand but still distraught. In all fairness though, her mental retardation is not nearly as detrimental as the physiological impairments that commonly occur from this disorder that prove to be fatal, so I do think the focus in the doctor's response was not properly oriented.