Growth Attenuation: Unjustifiable Non-therapy

Gunther and Diekema¹ provided the case of a 6-year-old girl with profound and multiple impairments who underwent a hysterectomy and “growth-attenuation therapy.” The intention was to avoid a future out-of-home placement by ensuring that the child remained small in stature, thereby helping her parents to continue to care for her. As leaders of the American Association on Mental Retardation, the oldest multidisciplinary association in the United States representing professionals within the field of intellectual and developmental disabilities, we endorse policies and actions that help families to rear their children at home, and we applaud the efforts of the many professionals who provide extraordinary care to children with intensive and pervasive support needs. However, we view growth-attenuation as a totally unacceptable option. Brosco and Feudtner² raised serous concerns, and we add to those.

Gunther and Diekema recognized little potential for the growth and development of this child. However, there is abundant evidence that all children are able to learn, that the cognitive capabilities of children with severe motor impairments can be grossly underestimated, and that an ever-improving future for individuals with extensive impairments is achievable.

Estrogen has hugely important actions throughout development, and the long-term consequences of this extreme intervention may be deleterious. Further, the suggestion that growth attenuation should not be a concern if we truly accept the position of disability advocates (that physical stature is irrelevant) distorts logic. There is nothing in the disabilities rights movement that could possibly justify constraining anyone's development.

Most importantly, we do not see growth attenuation as therapy at all. Therapy addresses a condition of a patient; it does not impede normal development. The parallel with abandoned practices that targeted tall young women seems desperate, but even there assent was obtained. Clearly, this child had her body altered irreversibly without her awareness. While parents are rightly vested with the responsibility for making health care decisions for their minor children, their prerogatives are not absolute. Children have their own distinct rights and protections. In these types of situations, both law and ethics demand that these rights be protected, and an independent professional with expertise in disability rights must be formally involved.

There is an enormous potential for abuse here. Practice can rapidly degenerate if the anxieties of the parents replace the medical status of the child as the immediate focus. What would argue against restricted caloric intake to minimize weight or even “amputation therapy”? Given the history of neglect and devaluation of this population, we are appalled that anything like this could, in 2006, still be a topic for serious debate.

Correspondence: Dr Bersani, President, Board of Directors, The American Association on Mental Retardation, Western Oregon University, 345 N Monmouth Ave, Monmouth, OR 97381 (bersanh@wou.edu).

Financial Disclosure: None reported.