Ashley treatment
The Ashley Treatment refers to a series of controversial treatments that were first performed on a Seattle child, Ashley X (*).
Ashley was born in 1997 and is severely mentally challenged from static encephalopathy of unknown cause. Treatment includes stopping growth prematurely with hormonal drugs, hysterectomy , bilateral mastectomy, and appendectomy .
The primary purpose of this treatment is to prevent the formation of secondary sexual characteristics and growth to adult size. The combination of these treatments generated great public interest and ethical discussions in early 2007.
(*) The last name of "Ashley X" is unknown.
background
Ashley was born with severe brain damage of unknown cause called "static encephalopathy" because her condition does not change. Although she is able to breathe, sleep, and wake up on her own, she is unable to lift her head, sit up, play, or speak. She is fed through a nasogastric tube. However, she reacts to her surroundings and particularly likes the music of Andrea Bocelli . Her parents gave her the nickname "pillow angel", in English "pillow angel", because she always stayed where she was, in most cases a pillow.
In 2004, at the age of six and a half, Ashley showed the first signs of puberty, and parents and doctors began to wonder what problems this could cause for mentally disabled children. As these children get older, it would take more strength to move them and provide basic personal hygiene, and the risk of Ashley becoming sore would be much higher. Premature puberty is common in children with severe brain damage. The appearance of secondary sexual characteristics often worries and unsettles the parents of mentally handicapped children, which is why they are looking for ways and means of dealing with the problems that e.g. B. brings a child in diapers who is menstruating . A wide range of treatments have been used to address these problems over the decades.
In July 2004, Ashley had her uterus removed (to prevent her menstrual period ) and her developing nipples (to prevent her breasts from developing). The appendix was also removed. The procedures were performed at Seattle Children's Hospital and Regional Medical Center . Thereafter, hormone therapy with estrogen was started, which stopped their growth prematurely.
Ashley's treatment was published by the treating doctors in a scientific journal in October 2006 and sparked discussions around the world. As of January 2007, Ashley's parents, who want to remain anonymous, kept a now inaccessible blog in which they explained the reasons for their decision to receive treatment.
Arguments for treatment
Parents argue that it was in the best interests of the child that they had the treatment given as they are now able to continue caring for their daughter and that there is less risk of pressure ulcers . Furthermore, the inconvenience associated with menstrual bleeding and the risk of pregnancy should be prevented. The prevention of breast cancer and appendicitis are also mentioned, especially since these would be difficult or impossible to diagnose with Ashley because she cannot speak. They also believe that Ashley is less at risk of sexual abuse if she doesn't develop secondary sex characteristics.
Reactions
In the US, Arthur Caplan of the University of Pennsylvania School of Medicine described the treatment as "a pharmaceutical solution to social failure - the fact that American society does not have what it should have to help disabled children and their families."
Various human rights advocates, including Not Dead Yet and Feminist Response in Disability Activism (FRIDA), have called the treatment "medical experiment", "mutilation" and "violation of Ashley's human rights". FRIDA has called on the American Medical Association to take legal action.
An article in Deutsches Ärzteblatt gives an overview of the (rather negative) reactions in Germany.
Individual evidence
- ^ A b Gunther DF, Diekema DS Attentuating growth in children with profound developmental disability: a new approach to an old dilemma . In: Archives of Pediatrics and Adolescent Medicine Vol. 160, 2006, ISSN 1072-4710 , pp. 1013-1017 ( online )
- ↑ a b Ashley’s blog: https://ashleytreatment.spaces.live.com/about/en-us/ (link not available)
- ↑ Barley, RD Case Ashley: An Ethical Dilemma . In: Deutsches Ärzteblatt Vol. 104,3, 2007, ISSN 0012-1207 , p. A94 ( online )