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Controversial Treatment Gives Patient Higher Quality of Life but Takes Away Self Dignity
In Seattle, a 9 year old girl named Ashley is affected by a disease called static encephalopathy. This disease confines Ashley to her bed, not allowing her to walk, talk, or move her own body. She is fed through a tube and has brain growth resembling that of a 3 year old.
Due to Ashley’s condition her parents decided to give her a treatment called “growth attenuation". This is a hormonal treatment to physically stunt Ashley’s growth. According to EarthTimes.org, “She underwent hysterectomy, a surgery to prevent growth of her breasts and the removal of her uterus, and she was put on high doses of estrogen. The treatment is expected to ensure that her height will be kept around four feet and five inches and her weight at 75 pounds for the rest of her life. In normal circumstances and without the hormonal treatment, she would have had five feet six inches height and 125 pounds weight.”
Ashley’s parents decided on the growth attenuation in hopes that they would be able to provide a higher quality of life for their daughter. They were afraid that as Ashley got older and grew larger, that they would not be able to provide the same quality of care as they do now. Although they state that their decision was based solely on the attempt to give their daughter a better life, many advocates argue that the treatment was a violation of her personal dignity and defies the medical oath.
The parents have since launched a website in defense of their decision. They state on their website, "Ashley has not shown material progress in her mental ability since she was three months of age, she is dependent on us in every way (including position change in bed), she can't hold a toy, and we're not sure she even recognizes us."
The parents say that critics statements such as; “the treatment was only done for their convenience”, is what bothers them the most. The parents wrote on their website, “Ashley's biggest challenges are her comfort and boredom…. [The treatment] goes right to the heart of these challenges and we strongly believe that it will mitigate them in a significant way and for the rest of her life.”
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