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Late last year, details emerged of the case of a severely intellectually and physically disabled child who was treated with a new kind of medical intervention, the primary aim of which was to restrict her physical development in order to make it easier for her parents to care for her. The treatment began when the child was aged six. 1
By January of this year news of the case had spread to the UK and was being widely reported. 2 3 We learned from the reports that the child, Ashley, by now 9-years old, had been diagnosed with static encephalopathy 1 which was the cause of her severe intellectual and physical disabilities. Ashley's disabilities are such that she is unable to walk or talk, or even move herself to change position when lying down. It is thought that her cognitive ability is similar to that of a 3-month old infant. She lives at home with her parents and two younger siblings. Her parents describe her as a "pillow angel". 4 She is said to enjoy the lights and sounds of TV, music and the company and embraces of her family.
At the request of her parents, and with the agreement of the ethics committee of Seattle Childrens' Hospital, she was subjected to a range of medical interventions. 1 These include hysterectomy, the removal of "breast buds" to prohibit growth of breasts and treatment with high doses of oestrogen. (An appendectomy was also performed at the same time as the hysterectomy. 4 ) The purpose of these interventions is to inhibit Ashley's physical maturation and growth. The appendectomy was performed since it could easily be done at the time and it would prevent a situation arising in which Ashley suffered appendicitis but was unable to communicate this. The ethics committee's view was that these interventions were indeed in Ashley's best interests, and hence they approved them. 1 2
The case provoked a range of responses. The headlines of the reports provided in the UK by the Guardian and the BBC read respectively: "Frozen in time: the disabled nine-year-old girl who will remain a child all her life" 3 and "Treatment keeps girl child sized". 2 Many with an interest in the rights of disabled people...