Thursday, April 02, 2009

A Great Enough Comment To Post

Back in 1964, (the dark ages of neonatology, if it even existed as a specialty) 10% of babies with tri 18 lived past a year and 1% past ten years.

Today, the statistics have worsened, not improved, despite incredible advances in neonatology.

In 1981, a geneticist put out a call in the Am Journal of Genetics for all cases of tri 13 or 18 in which the children were older than 10 yrs of age. Imagine that!! He wanted to understand why some kids die young and others don't. That was smart thinking!

Then genetic testing and termination advanced. The most recent article about trisomy 18 (last summer) states that is is "unethical and contrary to the child's best interests to resuscitate a new born with Trisomy 18 for whom a cardiac condition has been detected prenatally." Imagine that!!

The article (published in a major journal called Pediatrics), went so far as to say that any neonatologist who resuscitated was acting based on the parents demands and contrary to the chld's best interests.

What is interesting about it all is that what is clearly a judgment on quality of life has, over the decades, worked its way to disguise itself as a medical definition.

The following article, written by leading American MD/EThicists (and heroes, in my mind) explains it well:

In this video, a man describes having to fight for his daughter's life (trisomy 13) when the staff covertly tried to allow her to die.

She is now a beautiful 7 year old walking independently thanks to the efforts of her family.


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