Navigating Growth Attenuation in Children with Profound Disabilities: Children’s Interests, Family Decision-Making, And Community Concerns.

A twenty-person working group convened to discuss the ethical and policy considerations of the controversial intervention called “growth attenuation,” and if possible to develop practical guidance for health professionals. A consensus proved elusive, but most of the members did reach a compromise. In 2006, the Archives of Pediatric and Adolescent Medicine published a case about a six-year-old girl with profound developmental disabilities who was given estrogen patches to reduce her final height. (1) The article also offered an ethical justification for growth attenuation, as this kind of intervention is known: it would let her parents lift and move her more easily, which the parents believed would allow her to participate in more social and recreational activities and would help them with routine activities like dressing and changing her diapers. The authors estimated that the estrogen reduced the child’s final adult height from a predicted five feet four inches to approximately four feet six inches. They also recommended that similar parental requests in the future be reviewed by neurobehavioral specialists, endocrinologists, and ethics committees, so that decisions would be based on an accurate neurodevelopmental prognosis and a thorough, case-by-case evaluation of harms and benefits to the child. An accompanying editorial criticized the intervention but praised the publication for offering an opportunity for a public response. (2)

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