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Ethics debate surrounds surgery to stunt disabled girl’s growth

Friday, January 5, 2007

An ethical controversy has surged in the United States and elsewhere around nine-year-old Ashley X (her family name has not been released). The disabled girl was operated upon at the request of her parents, to prevent her from growing, menstruating and developing breasts. The parents, who wish to remain anonymous, explain their situation on a blog entitled The “Ashley Treatment”. There have been over 1000 reactions on the blog so far.

Ashley suffers a condition termed static encephalopathy with marked global developmental deficits of unknown etiology, which means brain damage of unknown cause leading to a kind of static condition. She can make sounds, move her arms and kick her legs, but she cannot change her position, eat, walk, talk etc. Many of these children are in poor health and die young, but Ashley is in good health. For all of these functions she depends on her caregivers. Most of the day she passes watching her surrounding, lying on a pillow. Her parents call her their “Pillow Angel”, “since she is so sweet and stays right where we place her—usually on a pillow.”

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Ashley can continue to delight in being held in our arms and will be moved and taken on trips more frequently and will have more exposure to activities and social gatherings.

-Ashley’s Mom and Dad

Ashley’s parents want to keep her at home and care for her themselves, and they want to guarantee their daughter’s quality of life. To this end, they say, Ashley underwent several surgical procedures and medical treatments during a period of three years. To attenuate her growth, Ashley was given high doses of the hormone estrogen. Ashley now measures 4ft 5 (1m 35cm) and weighs around 75 lbs (34 kg), which is below her expected length and weight. Her low body weight and size would improve her comfort, and at the same time facilitate the work of her caregivers.

Surgery to remove her uterus (a procedure called a hysterectomy) and breast buds were performed, so Ashley does not menstruate and will not develop breasts, both of which parents think only would cause her discomfort. Since high estrogen levels can cause menstrual bleeding and breast development, the surgery was also meant to limit these effects. She also underwent surgery to remove her appendix, because it would be difficult to diagnose appendicitis given Ashley’s low communication possibilities.

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