Word: ashley
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Dates: during 2000-2009
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What kind of doctors would agree to shorten and sterilize a disabled 6-year-old girl to make it easier for her parents to take care of her? Dr. Daniel Gunther and Dr. Douglas Diekema, who revealed the details of the Ashley Treatment in the Archives of Pediatric & Adolescent Medicine, were intent on improving the life of the child whose parents call her their "pillow angel"; they think their critics don't understand the extreme nature of this case. The critics, especially advocates for the disabled, think the doctors don't understand the true cost of what they have done...
...case: Ashley, now 9, is a severely brain-damaged girl whose parents feared that as she got bigger, it would be much harder to care for her the way they wanted to. So they set out to keep her small. Through high-dose estrogen treatment over the past two years, her growth plates were closed and her prospective height reduced about 13 in., to 4 ft. 5 in. "Ashley's smaller and lighter size," her parents write on the blog defending their decision, "makes it more possible to include her in the typical family life and activities that provide...
...Arlene Mayerson, a leading expert in disability rights law, who like many critics feels intense sympathy for these parents. "Many things that were done under a theory of benevolence were later seen as wrongheaded violations of human rights. " Medicine's role is to relieve pain and improve function, but Ashley was not sick, and the treatment was untested; do we really want to start bending the rules in the case of the disabled just for the promise of some benefit in the future, advocates ask? That's not healing, it's gambling...
...Ashley may be an extreme case; but she is a terrifying precedent. Critics note that for brain-damaged children, development can come very, very slowly - so deciding when she's only six to change a child's body irreversibly can amount to a medical form of identity theft. Frequent touch is indeed important; but is it really so much harder to hug someone who is 5'6," or bring her to the table at dinnertime? Turning people into permanent children denies them whatever subtle therapeutic benefit comes from being seen as adults. "I know they love their daughter," says Julia...
...Those troubled by the Ashley treatment as a medical fix for a larger social problem are watching the direction that Britain is taking. The Royal College of Obstetricians and Gynecology has proposed that doctors be allowed to kill the sickest infants - which is already legal in the Netherlands. "A very disabled child can mean a disabled family," the college wrote to the Nuffield Council on Bioethics, and urged that they "think more radically about non-resuscitation, withdrawal of treatment decisions... and active euthanasia, as they are ways of widening the management options available to the sickest of newborns." At least...